Showing posts with label The Tough Stuff. Show all posts
2017: Facing Many Changes
I clearly remember the anxiety that overcame me the minute the ball dropped last New Year's Eve. Once we said goodbye to 2016, it meant we were entering "the year that Aiden would have his midface surgery". It became real. We had to start saying "this year" rather than "in the future" when discussions on the subject would come up. The anticipation for this part of his journey had lingered for so long that the build up almost broke me.
In February we got a date confirmed for the mid-face advancement procedure and an official countdown began. My emotions were strapped in tight on the scariest roller coaster you could ever imagine. Most of the time I would be okay to function normally, participate socially, smile freely. But underneath the surface my nerves were shot.
My health suffered. I felt like a failure as a mom because there were so many moments I had to lock myself in my room to cry. The stress took a toll on my body and I bounced around from doctor to doctor begging someone to figure out why I felt like a 36 year old woman trapped in an 85 year old's body.
And yet time didn't stop, May 19th still steadily approached.
As someone with a type-A personality, always wanting to plan things and control the outcomes, the unknowns that surrounded the major procedure my 9 year old son was going to undergo left me feeling completely out of sorts. I found a wonderful therapist who was worth every penny, but even that was no match for the craziness that swirled about my head on a daily basis. I used to be someone who kept a clean house, stayed on top of the laundry, meal-planned and cooked healthy dinners several nights a week. Someone who loved to write. Someone who felt pretty confident in her abilities to be a decent mom and manage the chaos that is mothering 4 boys under 10.
In April, we went on spring break with a group of friends. For the second year in a row we had 14+ kids and 12 adults sharing a large beach house. It was totally crazy and definitely fun, but every second felt like I was watching it happen through the lens of "what-ifs". Every photo I took of the boys playing carefree in the sand was snapped with a lump in my throat and the gruesome thought "what if this is the last time we are on the beach together as a family of 6".
My friend Cara happens to be an amazing photographer so when I asked if she would take our family photos that year in Destin, she happily obliged. I remember applying makeup to my sunburned face and having to put my mascara on last because of the tears I cried thinking that these would be the last professional pictures we would have as a family before Aiden's surgery. The last photos we would have of Aiden the way he was then. My mind raced, "What if these were the last family pictures with Aiden we had...ever?"
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| Photo Credit: Caroline Couture Photography |
May began and we tied up loose ends. Everyone rallied around our son with Super Aiden t-shirts, care packages and lots and lots of visits with friends and family. And then, on a sunny morning in mid-May, we said our good-byes, kissed the other boys and piled in the car careening towards the biggest unknown of all. "What if Aiden doesn't come home?"
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Handing him over was still just as difficult as it always is. Ricky and I sat silently in the family waiting room but our hearts spoke through the worry on our faces. "Please let him come back to us."
In just 4 short hours the surgery was complete and although we still had several weeks of enduring the RED device, my biggest fear subsided. I started to breathe again. He was okay. We were going to be okay. The first few weeks were the hardest. He was sad, not himself. Who could blame him. When he began doing cannonballs into the pool we knew we would make it through this too. The days were slow but the weeks flew by and before we knew it we were heading back to Dallas for the removal of the device. The final weight to be lifted off our shoulders.
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Adjusting to Aiden's new look was slow at first. We had so many mixed emotions as we stared at a boy who looked one way 8 weeks earlier and totally different now. He bounced back quickly and had a new sense of confidence which made it easier for us to accept the change.
It wasn't long after things settled down that I finally took time to care for myself. I was eventually diagnosed with Hashimotos thyroiditis, an autoimmune disease that affects the function of your thyroid. I had been on medication for hypothyrodism for years but the underlying issue was (and may have always been) Hashimotos. With a clearer diagnosis, a new endocrinologist, some new medication and significant diet changes, I started on the right path to feeling better.
Although the surgery was behind us, I think I underestimated the time it would take for my mind and heart to heal. For many more weeks, months even, I felt like I was treading water, never able to make it to the edge for a break. I wasn't drowning anymore, but I was definitely still having trouble keeping my head above the splashes that even just a back to "normal" life surrounds you with.
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| My 2017 "Best Nine" photos from Instagram (the pictures with the most "likes"). Clearly indicates what our biggest event from this year was! Visit @MoreSkeesPlease on Instagram to follow our family. |
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Looking back, this entire year has mostly been a blur. There were so many good moments - wonderful friends that lifted our family up in ways that I'll never quite be able to adequately express gratitude for. Family who literally put their lives on hold to help us sort ours out. And the overwhelming relief of a successful surgery and smooth transition from Aiden before the RED to the new Aiden after the RED.
My strength and resolve was tested for sure, but with the love from those closest to us and even the support from complete strangers who prayed for a little boy they have never met, I'm happy to say I have found a renewed faith in God. My mind feels clear and my heart at ease. I am ready to take on 2018. Oh so grateful for the both the valleys and the peaks. Oh so grateful for this crazy beautiful life.
What Is the Mid-Face Advancement Surgery and the RED device?
102 days from surgery.
A friend asked me the other night, "So what exactly will they be doing?" As many times as I've talked about this procedure, I surprised that I found myself a little stumped on how to answer. I can tell you what the device is called, how it is attached, what the purpose of it is...but anything more in depth gets a little fuzzy. So I went to Aiden's surgeon's website and pulled information that can explain it much better than I can. Below is a summary that answers some of the most common questions I receive about this procedure.
- The LeFort III brings the entire midface forward in one piece from the upper teeth to just above the cheekbones and the monobloc brings both the midface and the forehead forward together at the same operation.
- Although the LeFort III is a major operation, of all the different procedures done for Apert syndrome it has the greatest impact on normalizing a child’s appearance and improving breathing at night.
- In 1998 [Dr. Fearon] developed what is called a halo-distraction technique for the LeFort III. This technique utilizes a device called the RED, which is actually not red, but purple in color. It gets its name for being a Rigid External Distraction device.
- With the RED procedure the bones of the mid face are cut loose then the skin is closed and a halo is attached to the outside of the skull with 8-10 screws. A splint (U-shaped piece of plastic) is attached to the upper teeth and two wires extend forward from this splint to attach to the halo.
- The forward pull of the midface comes from the dental splint. The parents, or the child, turn two screws on the device 2 to 3-times day in order to slowly (and painlessly!) bring the midface forward.
- The children are allowed to eat soft foods, may go to school, and can even go swimming while wearing the RED. For some children wearing this device after surgery is easier than for others.
- Seven to eight weeks later, the device is removed with a 20-30 minute anesthetic.
- The greatest advantage of the RED device is that it enables surgeons to move the midface much further forward than is possible the traditional technique (based on a study done at our center).
- We have treated over 125 children with this technique, and continue to make fine improvements in this procedure.
Below are some photos shared with permission from friends in the craniofacial community who's children have undergone the RED surgery already.
If you have any questions, please know that I am always happy to answer them! I may have to look it up myself, as I'm no expert on this by any means, but I will never be offended by the opportunity to learn and share. Just be warned that I do get emotional talking about it in person...so perhaps email would be better ;)
Feeling Blue About the RED
105 days.
That's how long sits between now and the day that our little boys face will be changed forever. As most of you know, Aiden has something called Apert syndrome. Along with the more than 12 procedures Aiden has already had, kids with Apert syndrome more often than not require what is called a mid-face advancement because the portion of their face from their brow bone to their upper jaw does not grow at the proper rate. The goal of the mid-face advancement surgery is to pull that section forward gradually. It is medically necessary in order to expand the airway in order to prevent apnea (and thus developmental delays), to address anatomical issues with the palate (which affects speech and sometimes eating), and finally, to "improve" physical appearance.
Improve physical appearance? That one kind of hurts my heart because, you see, I don't think Aiden needs his appearance improved one bit. I think my little soon to be 9 year old boy, who has had his skull broken open and pieced back together more than once, is perfect just the way he is.
I remember sitting in Dr. Fearon's office 8 years ago listening to him tell us what the typical treatment plan is for individuals with Apert syndrome. Along with sharing about the procedures to separate their fused fingers and toes, I clearly recall him casually mentioning this mid-face advancement, done around age 8 or 9, and thinking 'thank goodness we don't have to worry about that for a long time'.
And yet here we are, 105 days away, no longer a long time.
Our last trip to Dallas was fall of 2015. It was our craniofacial clinic where we bring Aiden for a round-up of appointments to check his growth, how much space his brain has in his skull, and monitor his sleeping to see if his apnea has progressed. We spend a full day bouncing from one specialist to another before finally heading to Dr. Fearon's office for his interpretation of all the tests. Because we were approaching Aiden's 8th birthday at the time, we fully expected to start the planning process for the mid-face advancement to be in May of 2016. But, we were surprised when he said that Aiden was doing well enough to postpone for another year. Nothing can describe the wide range of emotion we felt hearing those words: relief that he was doing so well, excitement that we would get to spend another summer surgery-free, and yet, also disappointment knowing we would have to endure the anxiety of anticipating this major surgery for yet another year.
We have been blessed to spend the past few years without having to put Aiden through any major procedures. In fact, he has been doing so well that I ultimately began to question whether Aiden would need the mid-face advancement at all. I had always been told that it wasn't a matter of if, but a matter of when. We would know when he needed it if he was not sleeping well due to snoring, if he was not breathing well, especially when sick with a cold, and if he was being severely made fun of because of his appearance. Now I know more goes in to it than that, but after thinking each of those things through, it became confusing to me. Aiden slept fine and rarely snored, he was able to stave off a cold in a normal amount of time (and in fact rarely got sick anymore at all), and although he does still get his fair share of stares and comments, I wouldn't call it severe teasing by any means. I was actually convinced that Dr. Fearon would say Aiden didn't need the RED afterall. In a moment of panic, I emailed him requesting a firm explanation on exactly why this is medically necessary FOR AIDEN specifically.
I'm sure I wasn't the first concerned parent to request more reassurance - and it felt good to seek a better understanding as Aiden's advocate. Dr. Fearon replied the next day with a thorough explanation. Our hopes for Aiden to escape the need were dashed.
We have been preparing ourselves in many ways over the past few months. Aiden regularly goes to a child psychologist whom he really trusts and feels comfortable opening up to about how he's feeling. I too have sought out a therapist to help me deal with my emotions as well. We talk about it only when Aiden brings it up or we need to, which is unfortunately becoming more and more often. We lean on our close-knit support group of other craniofacial families who's children have already had this procedure before us. One of our dear friends, John, actually boxed up his removed RED device and shipped it to us across the country just so Aiden could check it out closely first-hand. He along with numerous other kiddos have offered to answer questions on what to expect or any other topic Aiden might want to ask about. And I can't tell you how many times I've sat in a parking lot conducting my own kind of therapy session chatting on the phone with another cranio mom who knows exactly how it feels to be where I am right now. My goodness how all of these things have been and will continue to be life-lines to us. So very grateful.
Surgery is confirmed for May 19th, 2017. That gives us 105 days to soak up our little boy just the way he is. To prepare our hearts for the changes that are to come. This is a hard road, but we know we will get through it because we are not alone.
That's how long sits between now and the day that our little boys face will be changed forever. As most of you know, Aiden has something called Apert syndrome. Along with the more than 12 procedures Aiden has already had, kids with Apert syndrome more often than not require what is called a mid-face advancement because the portion of their face from their brow bone to their upper jaw does not grow at the proper rate. The goal of the mid-face advancement surgery is to pull that section forward gradually. It is medically necessary in order to expand the airway in order to prevent apnea (and thus developmental delays), to address anatomical issues with the palate (which affects speech and sometimes eating), and finally, to "improve" physical appearance.
Improve physical appearance? That one kind of hurts my heart because, you see, I don't think Aiden needs his appearance improved one bit. I think my little soon to be 9 year old boy, who has had his skull broken open and pieced back together more than once, is perfect just the way he is.
I remember sitting in Dr. Fearon's office 8 years ago listening to him tell us what the typical treatment plan is for individuals with Apert syndrome. Along with sharing about the procedures to separate their fused fingers and toes, I clearly recall him casually mentioning this mid-face advancement, done around age 8 or 9, and thinking 'thank goodness we don't have to worry about that for a long time'.
And yet here we are, 105 days away, no longer a long time.
Our last trip to Dallas was fall of 2015. It was our craniofacial clinic where we bring Aiden for a round-up of appointments to check his growth, how much space his brain has in his skull, and monitor his sleeping to see if his apnea has progressed. We spend a full day bouncing from one specialist to another before finally heading to Dr. Fearon's office for his interpretation of all the tests. Because we were approaching Aiden's 8th birthday at the time, we fully expected to start the planning process for the mid-face advancement to be in May of 2016. But, we were surprised when he said that Aiden was doing well enough to postpone for another year. Nothing can describe the wide range of emotion we felt hearing those words: relief that he was doing so well, excitement that we would get to spend another summer surgery-free, and yet, also disappointment knowing we would have to endure the anxiety of anticipating this major surgery for yet another year.
We have been blessed to spend the past few years without having to put Aiden through any major procedures. In fact, he has been doing so well that I ultimately began to question whether Aiden would need the mid-face advancement at all. I had always been told that it wasn't a matter of if, but a matter of when. We would know when he needed it if he was not sleeping well due to snoring, if he was not breathing well, especially when sick with a cold, and if he was being severely made fun of because of his appearance. Now I know more goes in to it than that, but after thinking each of those things through, it became confusing to me. Aiden slept fine and rarely snored, he was able to stave off a cold in a normal amount of time (and in fact rarely got sick anymore at all), and although he does still get his fair share of stares and comments, I wouldn't call it severe teasing by any means. I was actually convinced that Dr. Fearon would say Aiden didn't need the RED afterall. In a moment of panic, I emailed him requesting a firm explanation on exactly why this is medically necessary FOR AIDEN specifically.
I'm sure I wasn't the first concerned parent to request more reassurance - and it felt good to seek a better understanding as Aiden's advocate. Dr. Fearon replied the next day with a thorough explanation. Our hopes for Aiden to escape the need were dashed.
We have been preparing ourselves in many ways over the past few months. Aiden regularly goes to a child psychologist whom he really trusts and feels comfortable opening up to about how he's feeling. I too have sought out a therapist to help me deal with my emotions as well. We talk about it only when Aiden brings it up or we need to, which is unfortunately becoming more and more often. We lean on our close-knit support group of other craniofacial families who's children have already had this procedure before us. One of our dear friends, John, actually boxed up his removed RED device and shipped it to us across the country just so Aiden could check it out closely first-hand. He along with numerous other kiddos have offered to answer questions on what to expect or any other topic Aiden might want to ask about. And I can't tell you how many times I've sat in a parking lot conducting my own kind of therapy session chatting on the phone with another cranio mom who knows exactly how it feels to be where I am right now. My goodness how all of these things have been and will continue to be life-lines to us. So very grateful.
Surgery is confirmed for May 19th, 2017. That gives us 105 days to soak up our little boy just the way he is. To prepare our hearts for the changes that are to come. This is a hard road, but we know we will get through it because we are not alone.
A letter to the NICU nurses who were there when Aiden was born
Last week we celebrated Aiden's birthday with 7 candles on the cake. As most parents do, each year I say, where did the time go? The first couple years of Aiden's life were some of the toughest. But these last few? Nothing short of amazing.
If you haven't followed our story from the beginning, below are some of my first posts ever, as he was the reason I started this blog.
Aiden's Birth Story
He's Home!
More Great News
Not in the reading mood? Below is the trailer to a short film created for us several years ago about the start of Aiden's journey with Apert syndrome. (Shout out to Tommy Nolan of Creative Video Solutions!)
As I reminisce about the roller coaster ride that started with the diagnosis of our son's rare condition, I'm often transported over and over again to the delivery room. The hushed doctors, the dim lights, the beeping machines. Aiden was whisked away to the NICU where he spent the next 2 weeks, while Ricky and I wrestled our emotions within the quaint concrete walls of the Ronald McDonald House Family Room housed in the lower level of the same hospital. I walked those halls - back and forth, upstairs and down - for 14 days. Delirious. Dazed. Grieving. And although I knew nobody could make it better - make him better - I came to appreciate the tenderness of the nurses who tried to help our boy as we wondered how to heal our hearts.
Dear NICU nurses who were there when our boy was born,
It's been 7 years, so this "thank you" has been a long-time coming. The early days left little to be thankful for as our assumption of a healthy 2nd baby boy was abruptly replaced with shock, fear and anger. A sterile stay in the NICU is probably not how most families expect to start their journey with a new baby, so I'm sure you are used to the flux of emotions that come from our end of things. Looking back now though, I am able to truly grasp the gratitude I hold in my heart.
Thank you for being there for my son. While my hands were shaky, trembling with fear, your warm and steady touch reassured him when I could not. You see, I was too scared. It sounds crazy, too scared to touch my own son, but with wires and leads and tubes attached to him in various places, I was terrified that I'd do him more harm than good if I stroked his belly wrong or made him wiggle too much.
Thank you for your tenderness. You saw that we were scared. Scrubbing your hands and arms up to your elbows for a strict 3 minutes might be commonplace to you, but doing so before being allowed in to see our baby was definitely new to us. The first time around, we had the freedom to scoop up our infant as he slept within arms reach. We heard him breath all night long without buzzing machines and dinging bells. We felt like parents, not like visitors. When we stood outside the NICU doors with tear stained cheeks and bleary eyes, you stopped what you were doing to welcome us in. When just about everyone else met us with frowns and uncertain emotion, you didn't. Even though I couldn't see behind your protective mask, I could tell from your eyes that you were smiling. You walked us to our son's isolette, decorated with a big construction paper heart with his name, and reminded us that this home of his was temporary. You gave us hope when we had none.
Thank you for your respect. You spoke to us in direct terms that we could mostly understand. And if by chance we didn't, you never made us feel silly for asking questions. When I was too nervous to give my own son his first bath, you walked me through it step by step. When I voiced my concerns, you listened. Even when we sometimes felt like it, you never treated us like victims. We were Aiden's mommy and daddy, plain and simple. You never made us feel small - and that helped to build our confidence.
Thank you for your patience. Every night we made a list of questions. We made you stand there answering each one while we crossed them off our list. Sometimes, when we couldn't sleep, we came up at 3 or 4 in the morning to ask them again just so we could spin the answers around in our head and give our minds something to focus on. When I couldn't hear your responses through my heaving sobs, you gave me a moment to collect myself and simply tended to my child's needs. If I argued or got angry or demanded something of you, you understood it as raw emotions and didn't dish it back to me even when I may have deserved it. I promise I wasn't trying to be rude. I was just scared. Thank you for letting me be scared.
Thank you for your encouragement. I was told many scary things about my son in those first few days. I watched as doctor after doctor came in to shuttle him from test to test. Talk of brain bleeds, organ problems, breathing issues, severe mental delays - I was flooded with so many negatives that my entire existence was shaken to its core. I searched for normal. And even though they said I would not be able to nurse my boy because of the anatomy of his mouth, something inside of me made me want to. When he was no longer intubated, you let me try. You showed me latching tricks and pulled up a rocking chair and shooed visitors when I was getting frustrated. You probably don't know this but I successfully nursed Aiden for 4 months. Had you told me no like everyone else had, I would have missed out on an invaluable lesson on perseverance. Something we have carried on into every aspect of Aiden's life.
Please let this long overdue thank you letter serve as reminder on those really tough days - when you let the fear and misguided emotions from scared and tired parents make you doubt your very important role. We certainly didn't find hope from the doctors with their rushed search for answers, confusing big-words and "prepare for the worst" attitude. Without you, we would not have survived. HE would not have survived. We will be forever grateful.
Every year on his birthday, I think of you. And I'm finally getting around to letting you know.
Love,
A NICU mom
If you haven't followed our story from the beginning, below are some of my first posts ever, as he was the reason I started this blog.
Aiden's Birth Story
He's Home!
More Great News
Not in the reading mood? Below is the trailer to a short film created for us several years ago about the start of Aiden's journey with Apert syndrome. (Shout out to Tommy Nolan of Creative Video Solutions!)
As I reminisce about the roller coaster ride that started with the diagnosis of our son's rare condition, I'm often transported over and over again to the delivery room. The hushed doctors, the dim lights, the beeping machines. Aiden was whisked away to the NICU where he spent the next 2 weeks, while Ricky and I wrestled our emotions within the quaint concrete walls of the Ronald McDonald House Family Room housed in the lower level of the same hospital. I walked those halls - back and forth, upstairs and down - for 14 days. Delirious. Dazed. Grieving. And although I knew nobody could make it better - make him better - I came to appreciate the tenderness of the nurses who tried to help our boy as we wondered how to heal our hearts.
Dear NICU nurses who were there when our boy was born,
It's been 7 years, so this "thank you" has been a long-time coming. The early days left little to be thankful for as our assumption of a healthy 2nd baby boy was abruptly replaced with shock, fear and anger. A sterile stay in the NICU is probably not how most families expect to start their journey with a new baby, so I'm sure you are used to the flux of emotions that come from our end of things. Looking back now though, I am able to truly grasp the gratitude I hold in my heart.
Thank you for being there for my son. While my hands were shaky, trembling with fear, your warm and steady touch reassured him when I could not. You see, I was too scared. It sounds crazy, too scared to touch my own son, but with wires and leads and tubes attached to him in various places, I was terrified that I'd do him more harm than good if I stroked his belly wrong or made him wiggle too much.
Thank you for your tenderness. You saw that we were scared. Scrubbing your hands and arms up to your elbows for a strict 3 minutes might be commonplace to you, but doing so before being allowed in to see our baby was definitely new to us. The first time around, we had the freedom to scoop up our infant as he slept within arms reach. We heard him breath all night long without buzzing machines and dinging bells. We felt like parents, not like visitors. When we stood outside the NICU doors with tear stained cheeks and bleary eyes, you stopped what you were doing to welcome us in. When just about everyone else met us with frowns and uncertain emotion, you didn't. Even though I couldn't see behind your protective mask, I could tell from your eyes that you were smiling. You walked us to our son's isolette, decorated with a big construction paper heart with his name, and reminded us that this home of his was temporary. You gave us hope when we had none.
Thank you for your respect. You spoke to us in direct terms that we could mostly understand. And if by chance we didn't, you never made us feel silly for asking questions. When I was too nervous to give my own son his first bath, you walked me through it step by step. When I voiced my concerns, you listened. Even when we sometimes felt like it, you never treated us like victims. We were Aiden's mommy and daddy, plain and simple. You never made us feel small - and that helped to build our confidence.
Thank you for your patience. Every night we made a list of questions. We made you stand there answering each one while we crossed them off our list. Sometimes, when we couldn't sleep, we came up at 3 or 4 in the morning to ask them again just so we could spin the answers around in our head and give our minds something to focus on. When I couldn't hear your responses through my heaving sobs, you gave me a moment to collect myself and simply tended to my child's needs. If I argued or got angry or demanded something of you, you understood it as raw emotions and didn't dish it back to me even when I may have deserved it. I promise I wasn't trying to be rude. I was just scared. Thank you for letting me be scared.
Thank you for your encouragement. I was told many scary things about my son in those first few days. I watched as doctor after doctor came in to shuttle him from test to test. Talk of brain bleeds, organ problems, breathing issues, severe mental delays - I was flooded with so many negatives that my entire existence was shaken to its core. I searched for normal. And even though they said I would not be able to nurse my boy because of the anatomy of his mouth, something inside of me made me want to. When he was no longer intubated, you let me try. You showed me latching tricks and pulled up a rocking chair and shooed visitors when I was getting frustrated. You probably don't know this but I successfully nursed Aiden for 4 months. Had you told me no like everyone else had, I would have missed out on an invaluable lesson on perseverance. Something we have carried on into every aspect of Aiden's life.
Please let this long overdue thank you letter serve as reminder on those really tough days - when you let the fear and misguided emotions from scared and tired parents make you doubt your very important role. We certainly didn't find hope from the doctors with their rushed search for answers, confusing big-words and "prepare for the worst" attitude. Without you, we would not have survived. HE would not have survived. We will be forever grateful.
Every year on his birthday, I think of you. And I'm finally getting around to letting you know.
Love,
A NICU mom
A Month From Now, On a Tuesday
Nobody escapes grief. We have all experienced loss, disappointment, unexplained or unexpected situations that rob our heart of feeling whole. We ask why? And turn to friends, family, loved ones, books, the internet for support, meaning, answers. A psychiatrist attempted to wrap the emotion up in a pretty little box with a bow by providing an "outline" for the "stages of grief". But as I learned when we had Aiden, grief strays drastically from that chart. It proved more stressful when I realized my grief was not a straight line or a bullet point. It was a wave of back and forth. Good days and bad. But once I embraced the ebb and flow and let go of expectations that attempted to label our feelings, I healed.
I always tell people that despite the first two years of Aiden's life being the most difficult from a medical standpoint - with numerous appointments, surgeries, therapies, challenges - I was at my best. I wore many hats. Mom, nurse, teacher, student, supporter. And those hats plugged the holes in my heart like a band-aid. Over time however, and well after Aiden turned 2, the band-aids gave way and grief bled through rapidly. When things settled down and I didn't have to focus so much on Aiden's care, the reality and stress of it all finally took its toll. That next year was the hardest. But with help from friends (the ones that stuck around) and with the love of my family, we made it through. Together.
When my friends lost their little boy to cancer last year, I had no idea how to support them. I had never experienced loss like this. How could I possibly know what to say or how to help? I think some tend to be so intimidated by the fear of saying or doing the wrong thing that they run the other direction and never look back. I didn't want to do that. I couldn't do it. Because even though I could never fathom the hurt they held in their hearts, I too hurt right alongside them. I too grieved. I reached out to a person at my church who gave me some books on how to help friends through loss. I researched online. And finally, I just followed my heart and prayed that God would show me what to do.
My husband and I flew to be by their side as they said their final goodbyes. When we returned, I sent my friend a text every so often. Whether it was just to say I was thinking of her, or to tell her something that made me think of her little boy. Often times my boys would say they missed him or let go of a balloon and say they were sending it to him in heaven. I shared those special moments with her as I knew it would make her smile. I gave her space, always letting her know I was here to talk, but never wanting to impose.
Not too long ago, I was packing up some clothes that Nolan had outgrown and I came across a pair of PJs. They were faded and stretched having been hand-me-downs worn by both of my friends older boys, then my two younger ones. She had given them to me before her little boy had been diagnosed with neuroblastoma, and she probably never gave them a second thought. But when I sorted through the piles, I couldn't bring myself to get rid of them. I eventually decided to mail them back to my friend in Texas with a little note. Shortly after, she called and even though she's not much of a phone-talker, she opened up to me about how things have been. It was so refreshing to have her share with me. I cherish that conversation.
My husband and I flew to be by their side as they said their final goodbyes. When we returned, I sent my friend a text every so often. Whether it was just to say I was thinking of her, or to tell her something that made me think of her little boy. Often times my boys would say they missed him or let go of a balloon and say they were sending it to him in heaven. I shared those special moments with her as I knew it would make her smile. I gave her space, always letting her know I was here to talk, but never wanting to impose.
Not too long ago, I was packing up some clothes that Nolan had outgrown and I came across a pair of PJs. They were faded and stretched having been hand-me-downs worn by both of my friends older boys, then my two younger ones. She had given them to me before her little boy had been diagnosed with neuroblastoma, and she probably never gave them a second thought. But when I sorted through the piles, I couldn't bring myself to get rid of them. I eventually decided to mail them back to my friend in Texas with a little note. Shortly after, she called and even though she's not much of a phone-talker, she opened up to me about how things have been. It was so refreshing to have her share with me. I cherish that conversation.
This weekend, I found out that my college roommate, Anna, lost her husband in a tragic accident. She and I and another friend shared more than just space in our 2 off-campus rental houses. We would take walks and talk about our hopes and dreams for the future. They pegged me as the one who would get married and have a bunch of kids (they knew me well!) and Anna was going to be the career-minded one who would eventually be swept off her feet by her tall dark and handsome prince. 8.5 years ago, we celebrated her fairy tale coming true as she wed her soul-mate on a beautiful day in May. The 3 of us stayed in touch over the years despite spreading out to various parts of the country.
When I was on hospital bed rest last fall, pregnant with baby #4 and scared I would lose him, they both came to visit. We chatted and caught up, and even though we hadn't seen each other in months, it was reminiscent of our college chats. Anna shared with us that she and her husband had been trying for quite a while to have a baby of their own. Some time later, after many challenges and years of trying, she called to tell me they were finally going to parents. Joy! Such joy! Prayers answered! So when I got a phone call from a mutual friend this past weekend, letting me know that Anna's husband had tragically lost his life in a hiking accident, my head spun. But the baby! How can this happen? This is not fair!
When I was on hospital bed rest last fall, pregnant with baby #4 and scared I would lose him, they both came to visit. We chatted and caught up, and even though we hadn't seen each other in months, it was reminiscent of our college chats. Anna shared with us that she and her husband had been trying for quite a while to have a baby of their own. Some time later, after many challenges and years of trying, she called to tell me they were finally going to parents. Joy! Such joy! Prayers answered! So when I got a phone call from a mutual friend this past weekend, letting me know that Anna's husband had tragically lost his life in a hiking accident, my head spun. But the baby! How can this happen? This is not fair!
I wanted to get in my car and drive the 2 hours to be with her, but with 4 kids at home that's not always the easiest thing to do. I sent her a text. So cliche. So impersonal. But I wanted to let her know that I had heard the news and was praying. A little while later, one of Anna's best friends called me to talk. We cried. We shared our broken hearts. We talked about ways we could help her through this.
"I refuse to say if you need anything, let me know", I told her. "I find that so annoying. Nobody who is grieving ever wants to ask something of anyone. So as Anna's closest friend, you tell me what to do. Just say the word. Go here, pick this up, send this, whatever it is, tell me and I'll do it."
Her friend agreed and then she said something like this: She's going to have a lot of support over the next few days and weeks. She's going to have meals and visitors and be surrounded by lots of love. But a month from now, on a Tuesday, when family is no longer in town and she's gone back to work and comes home to an empty house each night, that's when she's going to need her friends the most.
"I refuse to say if you need anything, let me know", I told her. "I find that so annoying. Nobody who is grieving ever wants to ask something of anyone. So as Anna's closest friend, you tell me what to do. Just say the word. Go here, pick this up, send this, whatever it is, tell me and I'll do it."
Her friend agreed and then she said something like this: She's going to have a lot of support over the next few days and weeks. She's going to have meals and visitors and be surrounded by lots of love. But a month from now, on a Tuesday, when family is no longer in town and she's gone back to work and comes home to an empty house each night, that's when she's going to need her friends the most.
That right there friends, is the truth. I was so thankful for that honest reminder.
I plan on visiting my friend this week. But I also plan to remember her after the storm dies down. Her grief is going to ebb and flow after all, so my support will ride the waves along with it. Not just now, as she deals with the shock. Not just this week as she plans his memorial. Not just next month when she's made it through another calendar page. But always.
A month from now, on a Tuesday. And every month after that.
I plan on visiting my friend this week. But I also plan to remember her after the storm dies down. Her grief is going to ebb and flow after all, so my support will ride the waves along with it. Not just now, as she deals with the shock. Not just this week as she plans his memorial. Not just next month when she's made it through another calendar page. But always.
A month from now, on a Tuesday. And every month after that.
Don't Wish it Away
<<< I have so much to share in regards to all of the things going on in my life -- the birth of our 4th baby boy Nolan, moving into our new home, the boys starting (and loving) their new school, birthdays, and more -- but right now, I'm not ready to write about all the amazing new beginnings we're experiencing as a family while our dear friends are going through one of the most heartbreaking endings anyone could possibly endure.
As some of you may know, our friends and old neighbors, the Pickel's, have been tirelessly helping their little boy Dustin fight neuroblastoma. Cancer is an ugly disease, and while I've been touched by it before with older family members and friends, I've never been this close to a child in a battle for his life. I can still remember when Kelly called me to tell me her motherly instinct knew something was wrong when Dustin ran a low-grade fever for over a week and just wasn't himself. And a few days later, we sat in the waiting room at the children's hospital in Texas as they were hoping to confirm that the mass they found in his abdomen was in fact a benign Wilm's tumor and not, as they feared, cancer. Unfortunately, their lives took a very different turn when instead, they learned it was indeed neuroblastoma - one of the most rare and aggressive forms of childhood cancer.
This past week, after almost 2 years of traveling between New York, Michigan and Texas to have Dustin treated with the best teams across the US, the Pickel's learned that his remaining kidney is failing. The cancer and treatments have become too much for his little body and he doesn't have much time left on this earth. I cannot imagine the pain and fear that has lived in the hearts of our dear friends for so long now and how it has manifested in these last few moments they have with him. But I do know our hearts silently break all these miles away with each and every update.
This precious family was put into our lives for a reason. We were lucky to have spent the time we did with them and to have known Dustin before cancer was in the picture. And while we will always long for the carefree days of sitting together in the warm Texas sun with cheap wine in a "Mommy's Sippy Cup" glass, watching our kids ride Razors and Cozy Coups up and down the sidewalk, I hope they know that we will always be there for them, even in their darkest of days.
Reflecting on Dustin's brave fight has put so many things into perspective. Perhaps that is one of the gifts he will impart on all those who have known him. >>>
It's 2:30 in the morning and the baby stirs next to me. A grunt, a whimper, a full-out cry. I peel back the covers of my warm bed and nestle him into my arms to feed him. With my eyes falling shut I think to myself, "I can't wait for him to sleep through the night."
It's 5:45am and Hudson, 19 months, begins his morning trumpet of "Daddy!" and "Out!" waiting to be retrieved from his bed to start the day. The older boys, still snug in their beds, are able to drown out the noise. "Ugh," I think, "I can't wait for him to be as old as his brothers so he sleeps a little longer in the mornings."
It's 7:00am and the morning rush is in full swing. Toothpaste riddles the bathroom sink, toast crumbs streak across the counter. I'm signing notebooks and packing lunches and shuffling tiny feet out the door to catch the bus. When the big boys are off to school, I drop myself into the leather recliner and think "Shew, I can't wait until they are old enough to do more for themselves in the morning."
It's 11:00am. I'm trying to perfect the timing of running the laundry and dishwasher so that I have enough hot water to take a shower (for the first time in 2 days) and simultaneously get the housework tackled. I put Hudson down for a nap, feed the baby and try to pull myself together, knowing my time is limited. Somehow I manage to grab a bite to eat while I'm sweeping the floor, hanging up jackets, and taking out the trash with day-old stinky diapers in it. "Man," I think, "I can't wait until 5:30 comes around so Ricky is home to help."
It's 7:00pm and bedtime routines are underway. One of us is cleaning the kitchen after dinner while the other is getting PJs out, making sure teeth are brushed and doling out just-one-more-sip-of-water. Exhausted, our tempers are short and we think "I can't wait until they are in bed and we can relax." We rush the boys to their rooms and hurry through nighttime hugs and kisses. We gently close their doors and collapse into the couch, knowing we have to do it all over again tomorrow.
Sure, our days are tiresome. Raising small children is a big job. And while the day-to-day monotony and chaos sometimes seems too much, there are families who would give anything to have the normalcy of a messy floor and homework fights be the worst parts of their day.
My heart aches for our friends. Thinking about how their minutes, hours and days will unfold without their complete family of 5 is too heavy to comprehend.
These moments - of rearing children and watching them grow, of endlessly cleaning up messes, of changing a diaper or wiping a bottom for the umpteenth time - they are a privilege. These past few months watching our friends and their 3 year old baby fight a hard battle has opened my eyes. When I'm in the thick of it, I think of them and remind myself, "Don't wish it away, Taryn."
And I don't. Because I know I GET to do it all over again tomorrow.
Please pray for the Pickel family as they prepare to say good-bye to their sweet Dustin. Pray for comfort and peace. Pray that their faith carries them through the days to come. You can follow their story here.
{Update: Sweet Dustin lost his battle in the early evening hours on March 4th. He was surrounded by his family, and passed peacefully in his mommy's arms.}
Hospital Bedrest: Day 1 (this is a long one...)
Shortly after I pushed publish on my last post, I shut off the light, closed the computer and laid down to go to bed. Only as I lay there, I started to develop a strong throbbing pain in my belly. I've not ever noticed contractions at this stage of the game so I wasn't sure if that's what the pain was, but I was on my left side, was drinking water and was laying down - all the things they tell you to do if you begin having them.
After 30 minutes, then 45, I decided something wasn't right so I trusted my instinct and called the doctor on call. As I suspected, they sent me in to the hospital to get checked out. All to familiar with this routine, I assumed I would be monitored for an hour or so then sent on my way. However things took an entirely different turn....never a dull moment with me!
It was after midnight and although my dad was still awake, I woke my mom to have her drive me. When we got to the hospital they wheeled me to the birthing center and as we turned the corner I noticed someone had just been brought in via ambulance. Suddenly, nurses were shuffling around and there was lots of activity. Just a few minutes later I heard a nurse walk by saying how she barely made it in time. A mom delivered her baby right there in the triage room! They brought mom to a room and were tending to a very alert newborn in an isolette as we went by. I said a little prayer for the family, the dad looked like a deer in headlights, and also got teary eyed as I wondered if I would be able to make it far enough for that very moment (well, not delivering in a triage room in the nick of time...but having a good size healthy term baby).
I was put on the fetal monitor, given some IV fluids and after it was determined that I was in fact having irregular contractions, they shot me with a dose of Brethine to help calm my uterus. Still thinking they'd keep an eye on me and send me home, I was surprised when the doctor came by and told me they'd be admitting me for the night.
Once I was all checked in, they gave me an ambien and told me to get some rest. Mom had gone home and Ricky was on stand-by still in Southern Indiana. I didn't want him to have to drive up or leave work if I was going home the next afternoon.
I already had an ultrasound appointment set up for the next day but they bumped it up to 8am instead of waiting until 2pm. Because they still suspected a possible placental abruption they had the ultrasound done by the maternal fetal medicine group. They wanted to look for any evidence of the placenta beginning to pull away from the uterus and also to do a full growth scan of the baby, as oftentimes even if a tear/abruption is not seen on ultrasound, they are able to determine any problems if the baby is not growing well.
All looked perfect on the scan. Baby is an estimated 1lb. 10oz (which is several ounces bigger than usual at this point!), fluid levels are great, baby's measurements are on track and no evidence of any bleeding was seen. Great news! I was so relieved.
Back in the room I started to gather up my belongings as I waited for the doctor to review the scan and come in to discuss the great results. Again, I assumed I'd be discharged at that point and headed home.
Again, I was wrong.
The doctor came in and had a very different plan. He began by saying the scan looked really good and baby is a great size. "However," he continued, "you are at a very critical point in this pregnancy." He then led the conversation down a path I was not prepared for at all.
Because of my bleeding and the increase in its frequency, he said they still were very concerned. He explained that at just 23 weeks along baby was just shy of viability. "We need to make some serious decisions at this point," he began. "If you were to deliver today, tomorrow or even the next few days, we would need to know how you wanted to handle things."
Wait, deliver? My scan was great and I hadn't had any more bleeding in almost 24 hours. And he's talking about my risk of delivering this baby today or tomorrow? I felt like maybe he was mistaken on which patient room he went into. He said he wasn't trying to scare me, but there was no way of knowing if I was any immediate danger or would need emergency intervention if there was in fact a bleed that they weren't seeing. He left me to think things over and said he'd be back in to visit after discussing next steps with the maternal fetal docs.
I called Ricky and through tears tried to relay what the doctor had just thrown at me. Ricky left work, fearing the worst, to make his drive up to be with me. I just kept thinking the worst. Shortly after he got there, my doctor came back in to continue the discussion.
He explained things once again for Ricky to hear and when he said for the second time that we had some decisions to make I asked him what exactly he meant. "We need to know what to do if you should need an emergency c-section to deliver this baby. At 23 weeks there are numerous risks for developmental and physical problems. Worst case, baby wouldn't survive."
He went through a laundry list of issues the baby may face - most of which I already found out minutes before when I googled "baby born at 23 weeks".
"Basically, we need to know if you would want us to resuscitate and what medical interventions you would want for baby at birth."
With little discussion needed, Ricky and I exchanged a knowing glance that indicated we agreed - of course we would want any and all measures taken to help our baby live. I began to cry when I told the doctor this, thinking back to how much our life changed when Aiden was born and fearful of what our life would look like with another medically fragile child.
The complications swirled in my head: blindness, heart issues, underdeveloped bowels, cerebral palsy, and on and on. But what were we supposed to do? Take a look at our breathing baby and say "no, just let him die?" The thought is sobering, but still, we were sure that it wasn't a choice we would make. It would be in God's hands.
The doctor assured us that there was nothing to indicate that I was in fact in danger of going into labor at that point, but they wanted to have these important questions answered if something needed to be decided quickly.
With that, he said the best place for me to be for the next few days would be at a different hospital that had a higher level NICU with doctors and nurses who would be better equipped to handle an extremely premature baby. At least until I got to the point of viability. So they transported me via ambulance across the river to Cincinnati. (Worst ambulance ride ever by the way - which at #3 for the year gave me some experience to compare it to...driver had no clue where he was going, there was no airflow and I had to ask them to crack the side window because the A/C wasn't working, the EMT in back with me smelled like she had just smoked an entire pack of cigarettes so every time she hollered "turn left here John, no I said LEFT" I felt like she was breathing smoke right into my mouth.)
But I digress.
It's Halloween. I've been here one night and according to the main doctor here in the Special Care unit I am looking at being here at least until Wednesday. They want to see me go 7 days without bleeding or any other issues arising. As I type this I'm getting photos of the boys trick-or-treating with Ricky (the rain actually stopped right at 6:00) which makes me happy for them, but I'm having a hard time getting rid of this huge lump in my throat. Bed rest at home is not fun. Bed rest in the hospital is REALLY hard.
I'm with my boys all the time so I'm used to breaking up their fights, helping them with homework and lots of snuggling, hugs and kisses whenever I want them. While it will definitely be difficult to miss out on the everyday stuff with my family, I am choosing to remain positive. I just got the most beautiful flower arrangement from my bestie (thanks Audrey and fam!), Ricky is close enough to drive up at a moments notice, my boys are being well taken care of at my parents' and the nurses here have all been more than amazing. I take comfort in knowing I'm in good hands...and my baby is too.
As my wise momma
always says "This too shall pass". The end result will be soooo very worth it.
After 30 minutes, then 45, I decided something wasn't right so I trusted my instinct and called the doctor on call. As I suspected, they sent me in to the hospital to get checked out. All to familiar with this routine, I assumed I would be monitored for an hour or so then sent on my way. However things took an entirely different turn....never a dull moment with me!
It was after midnight and although my dad was still awake, I woke my mom to have her drive me. When we got to the hospital they wheeled me to the birthing center and as we turned the corner I noticed someone had just been brought in via ambulance. Suddenly, nurses were shuffling around and there was lots of activity. Just a few minutes later I heard a nurse walk by saying how she barely made it in time. A mom delivered her baby right there in the triage room! They brought mom to a room and were tending to a very alert newborn in an isolette as we went by. I said a little prayer for the family, the dad looked like a deer in headlights, and also got teary eyed as I wondered if I would be able to make it far enough for that very moment (well, not delivering in a triage room in the nick of time...but having a good size healthy term baby).
I was put on the fetal monitor, given some IV fluids and after it was determined that I was in fact having irregular contractions, they shot me with a dose of Brethine to help calm my uterus. Still thinking they'd keep an eye on me and send me home, I was surprised when the doctor came by and told me they'd be admitting me for the night.
Once I was all checked in, they gave me an ambien and told me to get some rest. Mom had gone home and Ricky was on stand-by still in Southern Indiana. I didn't want him to have to drive up or leave work if I was going home the next afternoon.
I already had an ultrasound appointment set up for the next day but they bumped it up to 8am instead of waiting until 2pm. Because they still suspected a possible placental abruption they had the ultrasound done by the maternal fetal medicine group. They wanted to look for any evidence of the placenta beginning to pull away from the uterus and also to do a full growth scan of the baby, as oftentimes even if a tear/abruption is not seen on ultrasound, they are able to determine any problems if the baby is not growing well.
All looked perfect on the scan. Baby is an estimated 1lb. 10oz (which is several ounces bigger than usual at this point!), fluid levels are great, baby's measurements are on track and no evidence of any bleeding was seen. Great news! I was so relieved.
Back in the room I started to gather up my belongings as I waited for the doctor to review the scan and come in to discuss the great results. Again, I assumed I'd be discharged at that point and headed home.
Again, I was wrong.
The doctor came in and had a very different plan. He began by saying the scan looked really good and baby is a great size. "However," he continued, "you are at a very critical point in this pregnancy." He then led the conversation down a path I was not prepared for at all.
Because of my bleeding and the increase in its frequency, he said they still were very concerned. He explained that at just 23 weeks along baby was just shy of viability. "We need to make some serious decisions at this point," he began. "If you were to deliver today, tomorrow or even the next few days, we would need to know how you wanted to handle things."
Wait, deliver? My scan was great and I hadn't had any more bleeding in almost 24 hours. And he's talking about my risk of delivering this baby today or tomorrow? I felt like maybe he was mistaken on which patient room he went into. He said he wasn't trying to scare me, but there was no way of knowing if I was any immediate danger or would need emergency intervention if there was in fact a bleed that they weren't seeing. He left me to think things over and said he'd be back in to visit after discussing next steps with the maternal fetal docs.
I called Ricky and through tears tried to relay what the doctor had just thrown at me. Ricky left work, fearing the worst, to make his drive up to be with me. I just kept thinking the worst. Shortly after he got there, my doctor came back in to continue the discussion.
He explained things once again for Ricky to hear and when he said for the second time that we had some decisions to make I asked him what exactly he meant. "We need to know what to do if you should need an emergency c-section to deliver this baby. At 23 weeks there are numerous risks for developmental and physical problems. Worst case, baby wouldn't survive."
He went through a laundry list of issues the baby may face - most of which I already found out minutes before when I googled "baby born at 23 weeks".
"Basically, we need to know if you would want us to resuscitate and what medical interventions you would want for baby at birth."
With little discussion needed, Ricky and I exchanged a knowing glance that indicated we agreed - of course we would want any and all measures taken to help our baby live. I began to cry when I told the doctor this, thinking back to how much our life changed when Aiden was born and fearful of what our life would look like with another medically fragile child.
The complications swirled in my head: blindness, heart issues, underdeveloped bowels, cerebral palsy, and on and on. But what were we supposed to do? Take a look at our breathing baby and say "no, just let him die?" The thought is sobering, but still, we were sure that it wasn't a choice we would make. It would be in God's hands.
The doctor assured us that there was nothing to indicate that I was in fact in danger of going into labor at that point, but they wanted to have these important questions answered if something needed to be decided quickly.
With that, he said the best place for me to be for the next few days would be at a different hospital that had a higher level NICU with doctors and nurses who would be better equipped to handle an extremely premature baby. At least until I got to the point of viability. So they transported me via ambulance across the river to Cincinnati. (Worst ambulance ride ever by the way - which at #3 for the year gave me some experience to compare it to...driver had no clue where he was going, there was no airflow and I had to ask them to crack the side window because the A/C wasn't working, the EMT in back with me smelled like she had just smoked an entire pack of cigarettes so every time she hollered "turn left here John, no I said LEFT" I felt like she was breathing smoke right into my mouth.)
But I digress.
 |
| Aiden: Boba Fett +++ Ethan: Iron Patriot +++ Hudson: A robot |
I'm with my boys all the time so I'm used to breaking up their fights, helping them with homework and lots of snuggling, hugs and kisses whenever I want them. While it will definitely be difficult to miss out on the everyday stuff with my family, I am choosing to remain positive. I just got the most beautiful flower arrangement from my bestie (thanks Audrey and fam!), Ricky is close enough to drive up at a moments notice, my boys are being well taken care of at my parents' and the nurses here have all been more than amazing. I take comfort in knowing I'm in good hands...and my baby is too.
As my wise momma
always says "This too shall pass". The end result will be soooo very worth it.
Dinosaur Hands and Dracula Face
Those are the names a 5th grader has decided to start calling my sweet 5 year old. Read more about it in my new post on the Cincinnati Parent Blog today.
When Mama Bear Comes Out
In the beginning, when I was a new parent of a child who looked different and one who was still processing it all, taking Aiden out and about was nerve-wracking. I was obsessed with how long people let their looks linger. I always assumed they were passing judgement and found myself constantly on the defense. Even though I loved my child fiercely - despite his differences - I was always shocked (and quite honestly a little skeptical) when a perfect stranger would comment on how cute he was. Were they being genuine? Or trying to cover up the fact that I caught them staring?
Over the past 5 years, I've seen and heard it all. What has surprised me the most is that adults seem to be the worst offenders. Hadn't anyone taught them manners? I'd think to myself when an adult would nudge their friend to have them look at my sweet boy. Kids, however, have an innocent and healthy curiosity that perhaps makes their reactions a bit more forgivable.
I was never quite sure how I would react during these encounters. I'm still not. I desperately want to have the right thing to say - something poignant and composed that can turn a negative situation into something positive for all parties involved. Unfortunately, that is rarely the case when emotions run high. I either find myself fumbling over my words or coming across like a crazy, overprotective mom.
As the parent of a child with Apert syndrome, I experience these encounters daily. But as a parent in general, I too have the responsibility to teach my own kids how to act appropriately - including how to respect others who have physical or behavioral differences. I get that sometimes kids make off-the-cuff remarks without thinking. I've experienced that myself on more than one occasion (once, while shopping at the grocery store, Ethan was overly vocal in his curiosity about a "little person"). It doesn't mean that I've failed as a parent and I don't pass that judgement on to other parents when their kids react to Aiden. However - it is my opinion that how the situation is handled (or NOT handled) at that very moment truly defines just how well you are doing your job.
Our family was invited to enjoy a day of baseball at the Dell Diamond this past weekend and we happily accepted. It was a beautiful day where we were able to enjoy the perks of experiencing a poolside party located on the upper deck of the stands. With all they have to offer there for kids, we actually caught very little of the game, instead alternated between the playscape and standing in line for the trampoline bungee (Aiden's choice) and the rock climbing wall (Ethan's choice).
While patiently waiting in line with Aiden, a boy in front of us, about 10 if I had to guess, began glancing back at Aiden. No biggie. It happens all the time. I would try to catch his eyes and offer a smile, but each time he looked at me he quickly turned around.
When it was our turn, they took 3 kids into the waiting area to sit on benches while the kids before them got unhooked from their harnesses. I went in with Aiden, who was between me and the boy on the bench. Immediately, any time Aiden turned toward the boy, he began to scoot himself farther away with an obnoxious scream. After the second or third time my blood was boiling.
"Is there a problem?" I shouted with an obvious amount of emotion. "I'm sorry," he said. "That boy is just freaking me out." I looked around for his parent. Nowhere to be found. "Well he is a perfectly sweet little boy and if you have a problem, perhaps you should go sit over there." I pointed to the empty bench on the other side of us. So off he went.
When I looked around yet again I noticed that a handful of adults had witnessed this exchange and suddenly, I felt like my actions were being judged. Even though I was protecting my child, I couldn't help questioning myself and whether I had handled it appropriately.
As Aiden bounced himself into the sky, laughing with pure joy the whole time, I heard a little girl behind me say "Look at that strange looking kid". Again, no parents nearby when I turned to her and said "He is not strange and that was very rude." She hadn't realized I was his mom standing there and was mortified when I addressed her. "I'm sorry for saying that," she said sheepishly and walked on.
A little while later, the boys were playing on the crowded playscape. It started to get really warm and Aiden came to me a few times complaining about this or that (nothing new). "I'm hot." or "Ethan's not playing with me." And so on. At one point he said "a boy stepped on my toes" and I chalked it up to it being an accident with so many kids running around. When he came to me a second time saying the same thing, I made a point to keep a closer eye on him as he ran off. Sure enough, as Aiden crossed the bridge from one side of the play structure to the other, a boy twice his size walked up to him and kicked him in the shin. I COULD NOT BELIEVE what I had just seen.
I scooped up Hudson who had been crawling around at my feet and without so much as a second to compose myself marched up to the boy, who was already walking away. "Hey you!" I shouted. He turned slowly, knowing full well I had just seen what he'd done. "DO NOT kick my little boy, do you hear me?" Dead stare. "DO YOU UNDERSTAND?" The boy hid behind a railing and shook his head yes before running off. Probably to go tell his mommy about the mean lady who yelled at him no doubt.
I went back to where I was sitting and mumbled to the woman next to me "Whew - sometimes mama bear just comes out." Again, I felt a sudden pang of guilt to have shouted at the boy and wondered if the moms would think I was too aggressive. She and another mother next to her said they'd both seen what the boy did and were horrified. Then they said what I thought during all 3 of those situations "Where are the parents?"
And that's just the thing. I wish the parents would have been there to handle their own child's behavior so I didn't have to step in but also so that they could learn, if they weren't already aware, how their child reacts to someone who is different than they are. Perhaps they could have used it as an opportunity to educate their child so they would not behave that way in the future. Or I could have talked to the parent about Aiden and shared a little of our story.
So while I would personally never let my child run around the crowded kids area without supervision, I was more disappointed that three opportunities to address their children's careless actions in public were lost...at the expense of my child's feelings.
In a perfect world, this stuff would never be an issue. Kids would always be nice to others regardless of what they looked like or their different abilities. In reality, I know that just isn't the case. So here are a few tips that you might use when you find yourself - or your child - in the middle of a situation like we experienced:
1. If your kid says something insensitive, acknowledge it. Not only if it was overheard, but especially if it was. I don't care how embarrassed you are or how much you want to pretend it didn't happen - ignoring it tells your kid two things: it's okay to do/say what they did and that they can get away with it, even in front of a parent. And please, even do this if you plan to address it differently in private.
2. Apologize on your child's behalf. Say something, anything, to let me know that you understand that your child's actions were hurtful. If you don't get it? Then I know your kid is never gonna get it. And that's just a shame.
3. Ask your child to apologize as well. Putting them on the spot holds them accountable for their behavior. It might even embarrass them enough to discourage them from doing it again.
4. Focus on the positive. Say something about my child that discredits the hurtful comment your kid just said. Did they say something about Aiden's face? Point out his sweet smile. Did they blurt out how different his hands are? Comment on how well he's able to use them to pick up that small piece of paper on the ground. Disarming the negative with a positive just might drive home the point that even with his differences, my child is pretty amazing.
5. Talk to your kids about respecting people of all shapes, sizes, colors and abilities. Have a conversation with them early and often. I began talking to Ethan about this subject when he was about 2 and could understand. Granted he had a brother as an example, but at that age Aiden was no more different to him than anyone else.
Bottom line is, we all want our kids to be accepted, but while that may not always happen naturally, respect should. I may not always be around to handle these situations on behalf of my child, just as the offending kid's parents were not there to witness it. But if we do our best to guide our children, provide a good example for them, and address behavior appropriately when something is said/done, then maybe kids like Aiden will encounter one less person who doesn't know any better.
From one mom to another - THANK YOU and please share!
Over the past 5 years, I've seen and heard it all. What has surprised me the most is that adults seem to be the worst offenders. Hadn't anyone taught them manners? I'd think to myself when an adult would nudge their friend to have them look at my sweet boy. Kids, however, have an innocent and healthy curiosity that perhaps makes their reactions a bit more forgivable.
I was never quite sure how I would react during these encounters. I'm still not. I desperately want to have the right thing to say - something poignant and composed that can turn a negative situation into something positive for all parties involved. Unfortunately, that is rarely the case when emotions run high. I either find myself fumbling over my words or coming across like a crazy, overprotective mom.
As the parent of a child with Apert syndrome, I experience these encounters daily. But as a parent in general, I too have the responsibility to teach my own kids how to act appropriately - including how to respect others who have physical or behavioral differences. I get that sometimes kids make off-the-cuff remarks without thinking. I've experienced that myself on more than one occasion (once, while shopping at the grocery store, Ethan was overly vocal in his curiosity about a "little person"). It doesn't mean that I've failed as a parent and I don't pass that judgement on to other parents when their kids react to Aiden. However - it is my opinion that how the situation is handled (or NOT handled) at that very moment truly defines just how well you are doing your job.
While patiently waiting in line with Aiden, a boy in front of us, about 10 if I had to guess, began glancing back at Aiden. No biggie. It happens all the time. I would try to catch his eyes and offer a smile, but each time he looked at me he quickly turned around.
When it was our turn, they took 3 kids into the waiting area to sit on benches while the kids before them got unhooked from their harnesses. I went in with Aiden, who was between me and the boy on the bench. Immediately, any time Aiden turned toward the boy, he began to scoot himself farther away with an obnoxious scream. After the second or third time my blood was boiling.
"Is there a problem?" I shouted with an obvious amount of emotion. "I'm sorry," he said. "That boy is just freaking me out." I looked around for his parent. Nowhere to be found. "Well he is a perfectly sweet little boy and if you have a problem, perhaps you should go sit over there." I pointed to the empty bench on the other side of us. So off he went.
When I looked around yet again I noticed that a handful of adults had witnessed this exchange and suddenly, I felt like my actions were being judged. Even though I was protecting my child, I couldn't help questioning myself and whether I had handled it appropriately.
As Aiden bounced himself into the sky, laughing with pure joy the whole time, I heard a little girl behind me say "Look at that strange looking kid". Again, no parents nearby when I turned to her and said "He is not strange and that was very rude." She hadn't realized I was his mom standing there and was mortified when I addressed her. "I'm sorry for saying that," she said sheepishly and walked on.
A little while later, the boys were playing on the crowded playscape. It started to get really warm and Aiden came to me a few times complaining about this or that (nothing new). "I'm hot." or "Ethan's not playing with me." And so on. At one point he said "a boy stepped on my toes" and I chalked it up to it being an accident with so many kids running around. When he came to me a second time saying the same thing, I made a point to keep a closer eye on him as he ran off. Sure enough, as Aiden crossed the bridge from one side of the play structure to the other, a boy twice his size walked up to him and kicked him in the shin. I COULD NOT BELIEVE what I had just seen.
I scooped up Hudson who had been crawling around at my feet and without so much as a second to compose myself marched up to the boy, who was already walking away. "Hey you!" I shouted. He turned slowly, knowing full well I had just seen what he'd done. "DO NOT kick my little boy, do you hear me?" Dead stare. "DO YOU UNDERSTAND?" The boy hid behind a railing and shook his head yes before running off. Probably to go tell his mommy about the mean lady who yelled at him no doubt.
I went back to where I was sitting and mumbled to the woman next to me "Whew - sometimes mama bear just comes out." Again, I felt a sudden pang of guilt to have shouted at the boy and wondered if the moms would think I was too aggressive. She and another mother next to her said they'd both seen what the boy did and were horrified. Then they said what I thought during all 3 of those situations "Where are the parents?"
And that's just the thing. I wish the parents would have been there to handle their own child's behavior so I didn't have to step in but also so that they could learn, if they weren't already aware, how their child reacts to someone who is different than they are. Perhaps they could have used it as an opportunity to educate their child so they would not behave that way in the future. Or I could have talked to the parent about Aiden and shared a little of our story.
So while I would personally never let my child run around the crowded kids area without supervision, I was more disappointed that three opportunities to address their children's careless actions in public were lost...at the expense of my child's feelings.
In a perfect world, this stuff would never be an issue. Kids would always be nice to others regardless of what they looked like or their different abilities. In reality, I know that just isn't the case. So here are a few tips that you might use when you find yourself - or your child - in the middle of a situation like we experienced:
1. If your kid says something insensitive, acknowledge it. Not only if it was overheard, but especially if it was. I don't care how embarrassed you are or how much you want to pretend it didn't happen - ignoring it tells your kid two things: it's okay to do/say what they did and that they can get away with it, even in front of a parent. And please, even do this if you plan to address it differently in private.
2. Apologize on your child's behalf. Say something, anything, to let me know that you understand that your child's actions were hurtful. If you don't get it? Then I know your kid is never gonna get it. And that's just a shame.
3. Ask your child to apologize as well. Putting them on the spot holds them accountable for their behavior. It might even embarrass them enough to discourage them from doing it again.
4. Focus on the positive. Say something about my child that discredits the hurtful comment your kid just said. Did they say something about Aiden's face? Point out his sweet smile. Did they blurt out how different his hands are? Comment on how well he's able to use them to pick up that small piece of paper on the ground. Disarming the negative with a positive just might drive home the point that even with his differences, my child is pretty amazing.
5. Talk to your kids about respecting people of all shapes, sizes, colors and abilities. Have a conversation with them early and often. I began talking to Ethan about this subject when he was about 2 and could understand. Granted he had a brother as an example, but at that age Aiden was no more different to him than anyone else.
Bottom line is, we all want our kids to be accepted, but while that may not always happen naturally, respect should. I may not always be around to handle these situations on behalf of my child, just as the offending kid's parents were not there to witness it. But if we do our best to guide our children, provide a good example for them, and address behavior appropriately when something is said/done, then maybe kids like Aiden will encounter one less person who doesn't know any better.
From one mom to another - THANK YOU and please share!
On having Apert syndrome: An interview with my 5-year-old
My son Aiden was born with Apert syndrome - a craniofacial condition that is characterized by physical differences in the way the head, hands and feet were formed during gestation. The bones that make up his skull fused prematurely meaning they do not expand on their own as he grows. In addition, his fingers and toes were fused together and he is missing one of the knuckles in each digit. This isn't something you see every day. In fact, Apert syndrome occurs only once in every 160,000 births. This means on average, of 4 million births in the US annually, only 25 are born with this rare condition.
We didn't know ahead of time (you can read more about Aiden's birth story here -- or watch us tell the story in this short film here). The doctors who delivered Aiden were just as shocked as we were. We found out afterwards that of all the neonatal doctors on staff in the NICU, only 2 had ever cared for a baby with Apert syndrome in their entire careers. To say he was born different is not an exaggeration. It is a reality. His reality.
From the very start, Ricky and I bottled up our fears and put them on a shelf so we could focus on Aiden's immediate medical needs. The first 2 years were chock full of appointments, hospital stays, research and surgeries. We barely breathed. Inevitably, the emotions eventually bubbled over and came pouring out once the dust settled. We had been so consumed with the medical side of his care that we never allowed the rest of it to sink in.
You see, I could schedule appointments or dose his medicines according to instructions. I could stay up all hours of the night to listen to his breathing or change post-surgical dressing changes. Sure, that was hard on this momma's heart, but it's not my heart I'm worried about. It's his.
As Aiden's mom, I worry if we are going to be able to raise this little boy to be happy. I am scared that others will not accept him despite his differences. More importantly, I am terrified that one day he will not accept himself.
For 5 years Ricky and I have made the conscious decision to treat Aiden no differently than we do his older brother Ethan. We don't baby Aiden. We don't do things for him without first pushing him to find ways to do things himself. He has to pick up his toys, eat his vegetables and do chores just the same as any other kid. His condition may present challenges. But it will never be an excuse.
As the boys have gotten older, Aiden's physical differences have become a topic of conversation in many social situations. There is pointing, staring and many times comments and questions from other kids while we are at the library or the park or a restaurant. So while we have worked so hard to ensure that Aiden feels no different than anyone else, the reality is, he is going to have to deal with a much more critical audience in the real world. For this reason, we have started discussing his differences with him at home.
I used to cringe at the words 'Apert syndrome'. I hated the sound of it coming out of my mouth. But...eventually we decided that in order for Aiden to develop self-confidence, we needed to stop being afraid of those words. If we want Aiden to accept himself fully, then Apert syndrome can no longer be something we associate with being bad. It's simply a phrase that describes his medical diagnosis. It does not define who Aiden is at heart.
When appropriate, we talk to the boys about Aiden's differences and always answer any questions they may have. A few times Aiden has asked why his hands are "big" or why he has to have surgery and after the initial dagger to the heart, we have found that answering matter-of-factly seems to be the best way to go. We tell him that God made him beautifully and perfectly and every single person is different in their own way. We explain that he needs surgery to give his brain room to grow so he can continue to learn all there is to learn in this world. So far, these answers have satisfied their innocent questions.
In an effort to gauge how much Aiden truly understands about having Apert syndrome, I decided to turn the tables and ask him some questions. I was curious to see how he feels about it and to figure out if the increasing number of sometimes awkward social encounters are impacting his self-confidence. The conversation went as follows:
Aiden, what is the best thing about having Apert syndrome? I'm handsome.
What is the worst thing about having Apert syndrome? The sleep studies.
How does it feel when people say mean things? People say "your face looks funny" and it makes me feel sad.
What do you say to them? I say "that's not nice, God made me this way."
What is your favorite thing about yourself? I'm smart.
What's something you're good at? Running.
What is something you need help with? Buttons.
How do you feel about your hands? I like them. But a friend at school said "your hands are fat" and I felt sad.
What is something you wish you didn't have to do? Go to the doctor.
What is something you like about surgery? Dr. Fearon has toys in his office.
What is something you don't like about surgery? Missing school.
Why do you have Apert syndrome? Because that is how God made me.
How do you feel about having Apert syndrome? Good. God made me this way and my mommy and daddy love me.As you can see, I've got nothing to worry about at this point. I've got one smart, self-aware and confident little guy on my hands : ) If only he would stay as positive and carefree as he is at 5.
Aiden starts kindergarten this fall which means an entirely new world of being away from me every day, playground bullies and learning how to stand up for himself. I'd be lying if I said I am not already feeling anxious about this. I asked him if he wanted me to come in and read the "All About Aiden" book to his new friends at school in the fall and I got an emphatic "yes" which I feel will be a great way to help kids understand both how Aiden is different, but also how really he is just an ordinary kid.
Of course we all know...Aiden is FAR from ordinary : )
{If your child has special needs or a physical difference, I would love to hear how you address it with them. Do you discuss it only when they ask or do you bring it up in an effort to make them aware?}
I just can't shake it
Grief is a stranger to nobody. We've all lost loved ones, dealt with emotional challenges and suffered traumas to some degree throughout our lives. As adults, we learn to rebuild with faith and move on with the grace of God. But the tragedy that took place in Sandy Hook on Friday seems almost too much to bear.
I've turned off the news. Haven't watched it since Friday when I couldn't stop watching it all day. I called my son's school that afternoon an hour and a half before pick up time and asked the secretary if it'd be silly for me to come get him early. Not out of fear, but for the simple reason that I wanted to hug him. See him. Know that he was alive.
Scrolling through my news feed yesterday I began seeing photos of those that lost their lives. It brought me back to 9/11 when I spent an entire afternoon looking at a website with pictures and names of each victim. It was as if I was searching for someone I knew - some reason that made the hurt in my heart seem justified. It's sometimes hard to remember that the grief felt during events like this, even when not experiencing it first hand is always justified. Such is the human condition. To feel. To be compassionate. To connect to others in times of need.
I sat in the nail salon yesterday after spending an "early Christmas" with my family and felt numb as holiday tunes trickled out of the speakers around me. I glanced up at the television, muted, but displaying headlines and captions, to see the father of one of the 1st graders get in front of the camera to talk about his daughter. I searched his face for emotion as the words popped up letter by letter. He described his little girl as "creative" and "imaginative" who always toted crayons with her wherever she went. She drew pictures for everyone for birthdays, when sick or just because. She was spirited and wise beyond her years. And I couldn't hold back my emotion any longer. He was not only describing his daughter...that was my Ethan. To a T.
Looking at the big beautiful eyes of that little girl I didn't know, my heart felt unbearably heavy. Those kids. Those families. Why? Why? WHY???
My grief is wound up tightly in the realities these families are facing and the unsaid moments of that Friday morning. I imagine a frustrated mother who fought with a stubborn 1st grader about what she wanted to wear, arguing over shoes or headbands or bows. I imagine a child who complained of a tummy ache but in the absence of a fever and childcare, his parents decided to send him to school anyway that fateful morning. I imagine the stay-at-home moms who hurried their little ones off to school, looking forward to a few moments of quiet in their day. I imagine the parent who scheduled an afternoon dentist appointment, not wanting their child to miss any school.
Those are the moments that will haunt these families. The "why didn't I" and the "what if's". And I guess my ability to empathize in that way is a blessing and a curse. I AM that parent. I've HAD those trivial arguments and anxious-to-get-them-out-the-door feelings. I'm constantly questioning every decision I make.
Life is precious - we never know what tomorrow holds. And yes, these tragic events have made me pause, hug and squeeze my kids and husband more often, more intently. But the truth is there is NO WAY to protect ourselves, our hearts, from pain and suffering. It's a part of life. We simply cannot control the actions of others - we cannot predict evil.
I don't care so much to hear about the gun-wielding boy who entered the school that morning. I don't seek to understand WHY he did what he did. That answer is evident. His life had ended far before he took his own - he stopped existing when he concocted this plan. That is how I have to see it anyway. Anyone who could walk into an elementary school devoid of emotion and take the lives of 26 people inside must not have had a heart beating in his chest. And while I'm confident his soul is burning in Hell, it is no consolation to the innocence that was stolen from that sleepy Connecticut town.
How? How can those families go on? It makes me want to vomit thinking about facing the hand-drawn pictures on the fridge. The closet full of hidden presents ready to unwrap at Christmas. The home videos that live on their computers, phones, DVDs. How does someone learn to put one foot in front of the other after losing a child? It has brought me to tears over and over.
Each night, I pray for the families. I pray for the children, staff and loved ones who survived. For the police and EMTs who were the first to the scene. And, I pray, perhaps selfishly, that this grief that I feel in my heart is never compounded by ever experiencing it first hand.
I've turned off the news. Haven't watched it since Friday when I couldn't stop watching it all day. I called my son's school that afternoon an hour and a half before pick up time and asked the secretary if it'd be silly for me to come get him early. Not out of fear, but for the simple reason that I wanted to hug him. See him. Know that he was alive.
Scrolling through my news feed yesterday I began seeing photos of those that lost their lives. It brought me back to 9/11 when I spent an entire afternoon looking at a website with pictures and names of each victim. It was as if I was searching for someone I knew - some reason that made the hurt in my heart seem justified. It's sometimes hard to remember that the grief felt during events like this, even when not experiencing it first hand is always justified. Such is the human condition. To feel. To be compassionate. To connect to others in times of need.
I sat in the nail salon yesterday after spending an "early Christmas" with my family and felt numb as holiday tunes trickled out of the speakers around me. I glanced up at the television, muted, but displaying headlines and captions, to see the father of one of the 1st graders get in front of the camera to talk about his daughter. I searched his face for emotion as the words popped up letter by letter. He described his little girl as "creative" and "imaginative" who always toted crayons with her wherever she went. She drew pictures for everyone for birthdays, when sick or just because. She was spirited and wise beyond her years. And I couldn't hold back my emotion any longer. He was not only describing his daughter...that was my Ethan. To a T.
Looking at the big beautiful eyes of that little girl I didn't know, my heart felt unbearably heavy. Those kids. Those families. Why? Why? WHY???
My grief is wound up tightly in the realities these families are facing and the unsaid moments of that Friday morning. I imagine a frustrated mother who fought with a stubborn 1st grader about what she wanted to wear, arguing over shoes or headbands or bows. I imagine a child who complained of a tummy ache but in the absence of a fever and childcare, his parents decided to send him to school anyway that fateful morning. I imagine the stay-at-home moms who hurried their little ones off to school, looking forward to a few moments of quiet in their day. I imagine the parent who scheduled an afternoon dentist appointment, not wanting their child to miss any school.
Those are the moments that will haunt these families. The "why didn't I" and the "what if's". And I guess my ability to empathize in that way is a blessing and a curse. I AM that parent. I've HAD those trivial arguments and anxious-to-get-them-out-the-door feelings. I'm constantly questioning every decision I make.
Life is precious - we never know what tomorrow holds. And yes, these tragic events have made me pause, hug and squeeze my kids and husband more often, more intently. But the truth is there is NO WAY to protect ourselves, our hearts, from pain and suffering. It's a part of life. We simply cannot control the actions of others - we cannot predict evil.
I don't care so much to hear about the gun-wielding boy who entered the school that morning. I don't seek to understand WHY he did what he did. That answer is evident. His life had ended far before he took his own - he stopped existing when he concocted this plan. That is how I have to see it anyway. Anyone who could walk into an elementary school devoid of emotion and take the lives of 26 people inside must not have had a heart beating in his chest. And while I'm confident his soul is burning in Hell, it is no consolation to the innocence that was stolen from that sleepy Connecticut town.
How? How can those families go on? It makes me want to vomit thinking about facing the hand-drawn pictures on the fridge. The closet full of hidden presents ready to unwrap at Christmas. The home videos that live on their computers, phones, DVDs. How does someone learn to put one foot in front of the other after losing a child? It has brought me to tears over and over.
Each night, I pray for the families. I pray for the children, staff and loved ones who survived. For the police and EMTs who were the first to the scene. And, I pray, perhaps selfishly, that this grief that I feel in my heart is never compounded by ever experiencing it first hand.
In an instant
I started to write a post getting caught up on the last 2 weeks including my relaxing stay-cation night at the Omni Hotel downtown Austin followed by my family coming into town for a week...and then life took over.
In an instant, the lives of our very good friends and neighbors, the Pickels, were turned upside down.
When we moved to Texas, we worried we wouldn't meet people quickly. We were excited to learn that there were a ton of kids on our street and, even more, most were boys. A couple weeks after moving in we felt at ease in our new surroundings. Neighbors brought over freshly baked cookies and 'welcome to the neighborhood' goodies. The kids began playing outside together as if they'd known one another for ages - which in turn, brought the adults together to chat on a regular basis. Before long, we were swapping babysitting duty and having each other over for dinner.
A month or so after moving in, we had purchased a new piece of furniture and while I like to give myself credit for being strong, Ricky needed a bit more muscle to help him get the piece upstairs so he called our neighbor Jeff. Even though they were on their way to get family photos taken for their church directory, Jeff and his wife Kelly and their two boys - Braden and Dustin - came down to lend a hand.
While the guys effortlessly carried the furniture upstairs, Kelly and I chatted and got to know each other a bit more. Braden is Ethan's age - in fact, their birthdays are just 2 days apart - so they of course became fast friends. And Dustin, who Aiden lovingly dubbed "baby Dustin" from the time he met him, was just 6 months old at the time. Aiden just adores him.
Fast forward almost 2 years and numerous bbqs, birthday parties and new babies later, the family who has become part of our close-knit neighborhood group of friends was hit with some devastating news.
Last week, the Pickels found out that "baby Dustin", who turned 2 in April, has stage 3 neuroblastoma, a solid tumor cancer that arises in immature nerve cells primarily in infants and children.
In an instant, the lives of our very good friends and neighbors, the Pickels, were turned upside down.
When we moved to Texas, we worried we wouldn't meet people quickly. We were excited to learn that there were a ton of kids on our street and, even more, most were boys. A couple weeks after moving in we felt at ease in our new surroundings. Neighbors brought over freshly baked cookies and 'welcome to the neighborhood' goodies. The kids began playing outside together as if they'd known one another for ages - which in turn, brought the adults together to chat on a regular basis. Before long, we were swapping babysitting duty and having each other over for dinner.
A month or so after moving in, we had purchased a new piece of furniture and while I like to give myself credit for being strong, Ricky needed a bit more muscle to help him get the piece upstairs so he called our neighbor Jeff. Even though they were on their way to get family photos taken for their church directory, Jeff and his wife Kelly and their two boys - Braden and Dustin - came down to lend a hand.
While the guys effortlessly carried the furniture upstairs, Kelly and I chatted and got to know each other a bit more. Braden is Ethan's age - in fact, their birthdays are just 2 days apart - so they of course became fast friends. And Dustin, who Aiden lovingly dubbed "baby Dustin" from the time he met him, was just 6 months old at the time. Aiden just adores him.
Fast forward almost 2 years and numerous bbqs, birthday parties and new babies later, the family who has become part of our close-knit neighborhood group of friends was hit with some devastating news.
Last week, the Pickels found out that "baby Dustin", who turned 2 in April, has stage 3 neuroblastoma, a solid tumor cancer that arises in immature nerve cells primarily in infants and children.
The diagnosis came as a huge surprise when a simple visit to the pediatrician turned into a week-long battery of blood tests and appointments.
Kelly had noticed Dustin seemed a little sluggish, wasn't eating very much and that combined with a long string of low-grade fever prompted her to take him in for a check up. At the appointment, the doctor determined Dustin was severely anemic and referred them to a hematologist.
Still not too worried at this point, Kelly figured he would be put on an iron supplement and they'd be on their way.
Unfortunately, that wasn't the case. One test led to another and they were given the news...every parents worst nightmare.
Their baby boy has cancer.
They are still waiting on some answers that will determine how his treatment will unfold over the course of the next year or so, however a small port has already been surgically implanted in his chest to begin chemotherapy. The tumor is attached to his kidney and is the size of a grapefruit. Both the tumor and his kidney will need to be removed but because of its size, the tumor first needs to be shrunk with chemo.
Our hearts are breaking for them.
In many ways, Ricky and I can empathize with our friends as they begin this difficult journey, and even though having Aiden changed our life in an instant too, we will never know the exact pain they are feeling. We just have to remain positive that through the power of prayer, God will heal Dustin of this disease and allow them to move on with their life without the fear and worry they are experiencing now.
Please keep the Pickel family in your hearts and prayers as they continue to learn more about Dustin's particular type of cancer and his prognosis.
The new and "improved" Aiden...
I am happy to say that Aiden's surgery is complete and everything went great!
The toughest part was handing him over from my arms to the doctor and watching them wheel him farther and farther away to the operating room. It's so hard - not knowing if that will be the last time your baby will lay in your arms. It may sound dramatic, and I know that realistically most surgeries end well, but the more times you go through it the more worried you become that "what if this time" something happens.
That fear is enough to paralyze a momma's heart. Ricky and I sat there where his bed was minutes before and held each other, crying, wishing, praying. I don't know how long we sat there, but the tears continued to flow freely even after we collected our things and exited the pre-op area.
Baby Hudson began kicking, reminding me to EAT SOMETHING, so off to the lobby we went in search of food. Even though eating was the last thing I wanted to do. Over breakfast I began thinking about just how much emotion a heart is capable of feeling. It got me wondering if those stories you hear about elderly couples dying within days of each other from a "broken heart" might actually have some truth to it. Sometimes when we are in the throes of Aiden's Journey I wonder how much pain my heart can feel before it would literally break in my chest. Maybe the amount of love balances it out, keeping it in tact. Only God knows for sure the workings of our mind, body and soul.
I do know that I am humbled by the outpouring of love and prayers from across the country - all for our Aiden. Keeping up with all the emails, Facebook posts and messages sure made the time fly by and calmed our nerves as we waited through the 3.5 hour surgery.
We are now in the PICU in a private room and Aiden is resting comfortably. They have given him a med to help relax him as he tends to be extremely feisty coming out of anesthesia. He opened his eyes slightly at one point and called out for me :) Ricky and I were able to reassure him of our presence which settled him right back down. Then he asked for "Jake" - his stuffed toy from Jake and the Neverland Pirates and snuggled back to sleep.
After speaking with Dr. Fearon (craniofacial surgeon) and Dr. Sacco (neurosurgeon), they informed us that everything went as planned during the procedure. While his brain didn't "expand" immediately as it had done during his previous cranial vault (indicating increased pressure), the skull bone was a bit thin which might be attributed to things beginning to get a little tight in there. Either way, the surgery was needed and successful.
Dr. Fearon pulled the brow bone out - or "overcorrected" - by about a 1/2 inch. This would be equivalent to 2-3 years of normal growth. They also put a nasal bone graft in between the brow bones to improve the shape of where the nose meets the brow.
They were able to open the previous wavy incision with little issue and once again, the wound looks amazingly thin and clean. We are confident that you will hardly be able to see it once it is completely healed. Dr. Fearon believes leaving the head wound uncovered allows oxygen to penetrate the incision and promotes a faster healing rate.
As for treatment plans in the near future, he doesn't anticipate any surgeries for around 4 years when he will undergo the midface distraction with the RED device. This is great news as I will most likely need every ounce of 4 years to prepare myself for that one!
Ricky just went to grab lunch, then we will tag team - we don't want to leave Aiden's side in case he starts to wake up. If we can swap out the broken recliner in our room with a better one I am going to stay the night with him and Ricky will catch up on some sleep back at the Ronald McDonald House. I really want to be the one here with him, but Ricky has already been urging me to let him stay so I can sleep comfortably, you know, since I'm 6 months pregnant and all. We may be fighting about this until they kick one of us out tonight at 8 :)
Here are a few post-operative pics. He is only slightly swollen at this point, however the swelling will increase quite dramatically over the next 48 hours before it finally starts the slow process of subsiding (which will take a good 4-5 weeks). They assure us he is not in any pain - might just have some headaches (um, I'd say so) but from the older kids who have undergone this same procedure, they've been able to conclude that the incision site itself and post-operative pain is not too bad.
Thanks again for following Aiden's story! Feel free to share it with others by using the buttons at the bottom of this post - these craniofacial kiddos go through so much and I want to spread awareness!
The toughest part was handing him over from my arms to the doctor and watching them wheel him farther and farther away to the operating room. It's so hard - not knowing if that will be the last time your baby will lay in your arms. It may sound dramatic, and I know that realistically most surgeries end well, but the more times you go through it the more worried you become that "what if this time" something happens.
That fear is enough to paralyze a momma's heart. Ricky and I sat there where his bed was minutes before and held each other, crying, wishing, praying. I don't know how long we sat there, but the tears continued to flow freely even after we collected our things and exited the pre-op area.
Baby Hudson began kicking, reminding me to EAT SOMETHING, so off to the lobby we went in search of food. Even though eating was the last thing I wanted to do. Over breakfast I began thinking about just how much emotion a heart is capable of feeling. It got me wondering if those stories you hear about elderly couples dying within days of each other from a "broken heart" might actually have some truth to it. Sometimes when we are in the throes of Aiden's Journey I wonder how much pain my heart can feel before it would literally break in my chest. Maybe the amount of love balances it out, keeping it in tact. Only God knows for sure the workings of our mind, body and soul.
I do know that I am humbled by the outpouring of love and prayers from across the country - all for our Aiden. Keeping up with all the emails, Facebook posts and messages sure made the time fly by and calmed our nerves as we waited through the 3.5 hour surgery.
We are now in the PICU in a private room and Aiden is resting comfortably. They have given him a med to help relax him as he tends to be extremely feisty coming out of anesthesia. He opened his eyes slightly at one point and called out for me :) Ricky and I were able to reassure him of our presence which settled him right back down. Then he asked for "Jake" - his stuffed toy from Jake and the Neverland Pirates and snuggled back to sleep.
After speaking with Dr. Fearon (craniofacial surgeon) and Dr. Sacco (neurosurgeon), they informed us that everything went as planned during the procedure. While his brain didn't "expand" immediately as it had done during his previous cranial vault (indicating increased pressure), the skull bone was a bit thin which might be attributed to things beginning to get a little tight in there. Either way, the surgery was needed and successful.
Dr. Fearon pulled the brow bone out - or "overcorrected" - by about a 1/2 inch. This would be equivalent to 2-3 years of normal growth. They also put a nasal bone graft in between the brow bones to improve the shape of where the nose meets the brow.
They were able to open the previous wavy incision with little issue and once again, the wound looks amazingly thin and clean. We are confident that you will hardly be able to see it once it is completely healed. Dr. Fearon believes leaving the head wound uncovered allows oxygen to penetrate the incision and promotes a faster healing rate.
As for treatment plans in the near future, he doesn't anticipate any surgeries for around 4 years when he will undergo the midface distraction with the RED device. This is great news as I will most likely need every ounce of 4 years to prepare myself for that one!
Ricky just went to grab lunch, then we will tag team - we don't want to leave Aiden's side in case he starts to wake up. If we can swap out the broken recliner in our room with a better one I am going to stay the night with him and Ricky will catch up on some sleep back at the Ronald McDonald House. I really want to be the one here with him, but Ricky has already been urging me to let him stay so I can sleep comfortably, you know, since I'm 6 months pregnant and all. We may be fighting about this until they kick one of us out tonight at 8 :)
Here are a few post-operative pics. He is only slightly swollen at this point, however the swelling will increase quite dramatically over the next 48 hours before it finally starts the slow process of subsiding (which will take a good 4-5 weeks). They assure us he is not in any pain - might just have some headaches (um, I'd say so) but from the older kids who have undergone this same procedure, they've been able to conclude that the incision site itself and post-operative pain is not too bad.
Thanks again for following Aiden's story! Feel free to share it with others by using the buttons at the bottom of this post - these craniofacial kiddos go through so much and I want to spread awareness!
* VLOG * Aiden's Head Surgery: Day 2 - Pre-Op Appointments
Today was a very busy day - one appointment after another from 9:30 am to 5:00 pm. We were able to meet up with April, her mom and her sweet new baby girl Greta for a quick lunch. Holding that little peanut and seeing how cute Aiden was with her makes me even more excited for Hudson to get here in August!
Aiden is asleep next to me as I type this. I keep running my hand over his head - feeling the shape of it under my palm. It's hard for me to wrap my mind around the fact that in less than 12 hours that will all feel different forever. There are some things that we are looking forward to having "fixed" - like the fact that his left brow bone has been lower than his right since the last craniotomy and all the lumps across his forehead that need to be "smoothed" out.
But those bumps, the uneven brow, the big sparkly eyes...that is my Aiden. I'm apprehensive about changing my boys features to say the least.
All in all, I'm trying to remain positive. We know this surgery is necessary - critical, in fact - to allowing his brain the room to grow unrestricted and keeping him developmentally on track. Dr. Fearon says he is one of the smartest kiddos he sees and while we attribute that to having proper medical treatment from day 1, he gave us a little pat on the back by saying that some of his research points to the home-environment playing a key role in the cognitive development of kids with Apert Syndrome.
So with that, I will just breathe. And I will trust in the fact that we are doing and will continue to do everything in our power to keep him strong and healthy. The cuteness, well, that's just part of who he is and nothing can take that away!
Here is a video from earlier this evening - featuring the star of the show this week...AIDEN!!!
PS - We found out today that his sleep study was completely normal...no apneas!!! Thanks again for everyone's continued prayers!
Aiden is asleep next to me as I type this. I keep running my hand over his head - feeling the shape of it under my palm. It's hard for me to wrap my mind around the fact that in less than 12 hours that will all feel different forever. There are some things that we are looking forward to having "fixed" - like the fact that his left brow bone has been lower than his right since the last craniotomy and all the lumps across his forehead that need to be "smoothed" out.
But those bumps, the uneven brow, the big sparkly eyes...that is my Aiden. I'm apprehensive about changing my boys features to say the least.
All in all, I'm trying to remain positive. We know this surgery is necessary - critical, in fact - to allowing his brain the room to grow unrestricted and keeping him developmentally on track. Dr. Fearon says he is one of the smartest kiddos he sees and while we attribute that to having proper medical treatment from day 1, he gave us a little pat on the back by saying that some of his research points to the home-environment playing a key role in the cognitive development of kids with Apert Syndrome.
So with that, I will just breathe. And I will trust in the fact that we are doing and will continue to do everything in our power to keep him strong and healthy. The cuteness, well, that's just part of who he is and nothing can take that away!
Here is a video from earlier this evening - featuring the star of the show this week...AIDEN!!!
PS - We found out today that his sleep study was completely normal...no apneas!!! Thanks again for everyone's continued prayers!
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