Just the way you are

Dear Aiden ~

In one week you will have yet another surgery.

After the first 2 years of one after another, I naively thought that the ones that lay ahead - when you would be older and I could explain things - would bruise my heart less. 

I stand corrected.

I wish I could trade places with you. I wish I could make all your medical issues go away. I wish you could enjoy childhood the way so many others get to - without doctors and hospitals and surgeries.

Today you surprised me by sharing a moment of self-awareness that broke my heart just a bit. As I was preparing your dinner, you watched my hand intently as it rested on the counter next to the stove.

"Why does my hand not lay flat like yours, mommy?" 

You put your hand next to mine in comparison - the curves and rigidness of the amazing hands created by God and re-created by doctors were brought to light in a way that had become so commonplace in my life. Yet, at 4 years old, you are just starting to notice. Just starting to care.

This moment caught me off guard. I instinctively spouted out the response from the top of my mind, the one that is always ready: "That's how God made you sweet-pea. Your hands are special. They are just fine. I love your hands".

That is true, no doubt. But, my dear Aiden, I want you to know that sometimes I want to let my heart respond instead. If I did, I'd shout "It's not fair, is it Aiden? I'm so sorry sweet boy."

I so hope that one day you will learn to love your differences the way I do. To understand that the unnatural curves of your fingers and the wideness and asymmetrical lines of your face make you YOU. 

But also know that it is okay to be angry sometimes and NOT like being different and to yell and scream and wish it away. I will be here for you in those moments to lift you up. To remind you that so many people love you and have been inspired by you. That your mommy and daddy love YOU more than anything in this world.


In the meantime, I'm still learning the right words to say. I'm fumbling a bit as I figure out this new part of our journey where holding you and drying your tears will no longer cut it. You are going to want answers. This time, you will need to know "why". 

I wish I could tell you why, sweet boy, I do. But I can't.

What I can do is tell you how we will get through this and all the challenges ahead. 

With love. Because love? That comes easy and will never falter.

I love you baby. Be strong,


  1. Well...I'm crying. Watching your kids struggle is the heaviest thing that can ever lay on your heart :)

  2. Absolutely beautiful, Taryn. My "boy" who has suffered plenty in his life and has joints that won't do what others' joints do - is 25. I don't think I've ever had answers as good as the ones you articulated here. Thanks for sharing and seeing the light and the truth.
    Jan Gunter

  3. You brought me to tears. Your son is so lucky to have you as his mom. I can just feel your sense of pride and adoration in him - something every child deserves from their parents. Lots of love to you and your family.

  4. I am tearing up as well! Your love for your sweet son is so clear and so wonderful. You are blessed to have each other, and I'll be praying for y'll that this one will be as smooth as the rest.

  5. This is my first post. My wife, April has commented many times. My son, Jackson also has Apert Syndrome. Following Aidens Journey is like looking into our future. As I know that Jackson will need to face many of the issues Aiden is going through.

    I look at Jackson every day I think how unfair it is. How I would forfeit my life if he could have a "normal life". Jackson does not understand that he is different yet; he is only 2. But he will soon and that scares me.

    Your post about Aiden asking why his hands look different tears my heart apart. He as well as my son don't deserve this but it is the hand they were dealt. The only thing we can do is be supportive.

    You have a beautiful child and you both are lucky to have each other.

    Mike Morealli

  6. I'm reading here to try to find the words for a friend that is currently holding her almost week old baby as the doctors are telling her that they are suspicious of Aperts Syndrome. Your words are amazing. Your journey is inspiring. And Aiden is absolutely a blessing. Thank you so much for your blog. It's changing perspectives.

    1. If I could tell your friend one thing it is this: It will be okay. Maybe not perfect. Maybe not the way she hoped or prayed. But in the end it will be okay. More than okay in fact. It will be beautiful. The first few weeks, months and even years are the hardest. But please let her know that she will get through it even when she doesn't feel like she can.

      And if she ever wants someone to chat with tell her I am more than happy to be there to hold her hand. My contact info is on my About page :)