“Its hard to believe my baby is 12 years old.”

Lots of parents say that. In fact, turning 12 is a milestone that is typical for most of us, right? But for Gideon, he’s in a unique category. But it’s the kind of category that you don’t want to be in. You see for Gideon, every birthday is a miracle. And so we will never cease to celebrate.

If you’re new here, I’ll give you the quick backstory.

My pregnancy with Gideon was normal and there were zero concerns. However, from the moment he arrived every doctor suggested that something was wrong, but no one knew what was wrong. With the exception of him failing his hearing test, all the other tests came back normal. He just had several minor abnormalities that didn’t fit neatly into a diagnosis. So we took our boy home and prayed for the best.

Because Gideon was not meeting his milestones, we were referred to several specialists. He was 8 months old when he was finally diagnosed with something called Peroxisomal Biogenesis Disorder. This is a rare, degenerative disorder that so far has left our little man legally blind and profoundly deaf. He doesn’t walk or crawl, and we have been told that his life expectancy could range anywhere from 2-20 years.

Gideon is totally dependent on his family to meet his every need. I like to say he’s my 12 year old infant. He will always need someone to help him, feed him, change him, move him, bathe him…be his eyes and ears.

So when I say, “Its hard to believe my baby is 12 years old,” I really do feel a rollercoaster of emotions around this day. I honestly never thought we’d make it this far. I can’t tell you how many times I’ve cried out to God for Gideon. I’ve cried for his shortened life expectancy, his health, his sight, his hearing, his seizures, his sleeplessness….I’ve shed more tears over this child, than anything else in my life.

And while I am beyond grateful for another year with him, I’m still sad that his life isn’t just a little easier. Oh that he could just walk…or see…or communicate…or just feed himself…or sleep through the night consistently. Any ONE of those of those things would make such a difference in his life… and ours.

But that’s not the story that’s being written. Gideon was given a unique set of challenges and we were given the gift of caring for Gideon. I so wish I could help him comprehend what an impact his life has had on our family and everyone he meets. And since he’ll never fully understand, I’m going to write it here for yall.

Dearest Gideon,

Your presence, your peace and your joy has radiated into the heart of your family and your friends. Even the people who follow your story online have been moved by your smile.

You continue to teach us what it means to love unconditionally, live joyfully and be happy with what you have. You’re not worried about tomorrow or the material things of this world… you are happy with the simple things like being held and tickled. You like the wind in your face, being in warm water, and daddy’s long beard. You love your siblings and toys that vibrate.

You continue to show the world what it looks like to live life with a happy heart in spite of the challenges you face. And each day that God grants me breath in my lungs I will do whatever is necessary to help you live your life to fullest. And I will praise God for each new day we have together.

Happy birthday Gideon.

Mama loves you.

PS: The countdown to Great Wolf Lodge has begun.