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.

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.

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!

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.

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.