Gideon got his Charlotte’s Web Hemp Oil, he got his bath, his magnesium, his lympathic massage… I checked his 27 night-time-routnine-boxes. But it didn’t seem to matter. You see, Gideon was up Sunday night so I just knew he was gonna be tired and sleep all night Monday night ..
Boy was I wrong.
That stinker woke up in the middle of the night laughing and I was salty about it. Here’s a 4 minute video of Gideon’s Midnight Shenanigans. (He’s got a thing for my hair.)
Irregular sleep is just one not-so-cool part of Gideon’s diagnosis. He’s done SO much better in the past few years regarding sleep. Now, when he wakes up, he goes back to sleep within an hour or so. But on some rare occasions, he reverts back to his first 6 years of life (where being up for 3, 4 or 5 hours in the middle of night was a normal occurrence). ðŸ˜
I’m not as angry these days about him waking up. I know my days with him will be considerably shorter than they will be with my other kids. In times like these, I remember my friends who have already lost their children to horrible genetic conditions and diseases. I can only imagine what they would give for just one more sleep deprived night with their child.
So as I hold Gideon close, I thank God for these hard nights. And then I pray for my friends whose arms will never again hold their children this side of heaven. I can’t even fathom.. 💔
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.
I don’t blog much anymore, so 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 us to meet his every need. I like to say he’s my 12 year old infant. He will always need help with any and every task. He needs someone to feed him, change him, move him, bathe him….to 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, my heart still hurts 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. And while we feel the weight of his daily needs, he seems pretty happy in spite of them. To him, it just means more time with the people he loves.
I tell him every day what a blessing he is to us and to the world, but I know he’ll never fully comprehend just how impactful his life has been on us and everyone he meets.
And since he’ll never fully understand, I’m going to write it here for y’all.
Dearest Gideon,
Your presence, your peace and your joy have 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.Oh that we would find ourselves slowing down and appreciating the little things like you do.
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.
At the age of 7 months old, Gideon was diagnosed with a degenerative genetic condition called, Peroxisomal Biogenesis Disorder (PBD). Initially we were told he would not live to see his first birthday. Shortly after that visit with his geneticist, I began my blogging journey. By the grace of God, I met Shannon who had a son with the same condition- and her son, Sam, was 10 years old! She connected us with a PBD specialist in Omaha, Nebraska and we learned that Gideon’s life expectancy could actually be anywhere from 2-20 years.
Our son Gideon turned 11 years old this past January and we feel beyond blessed to have such a happy PBD warrior. Although he isn’t able to communicate or walk, he’s easy going and easy to please. His favorite things are his daddy’s beard, toys that vibrate, and being in the water.
Over the years we’ve made it a priority to take Gideon with us everywhere we go; however, it has come with many challenges. We’ve had to figure out how to pack for a medically fragile kid, who is basically an 11 year old infant. He does not have a g-tube, but is on a pureed diet because he was never able to chew & swallow solid foods. So we are always packing diapers, wipes, etc. and preparing his meals based on how the day unfolds. But when we pack for trips & hotels, we take much more- bed rails, medications, our Nutribullet, his Real Food Blends, as well as all the paraphernalia that goes along with preparing/packaging his blended meals. (Among many other things!)
We’ve been extremely blessed to do some fun things over the years! We’ve taken short road trips to see family out of state. We’ve attended the Joni & Friends Texas Family Retreat! We’ve gone to many waterparks and we even made it to Gulf Shores, AL (our furthest road trip to date)! However, my heart has always been a bit sad because long road trips are hard on his small, frail body; and I knew we could never take him on a plane.
Or so I thought…
In September of 2023, I was traveling with a friend to Washington and I had a divine encounter with a woman named Effie. I made a random comment that showed my inexperience with airports. I used my son Gideon as an excuse for why we don’t travel far (or much) and proceeded to tell her all the reasons why he could never get on a plane. Turns out she also has a son with rare genetic condition, and she convinced me that traveling with a medically fragile kid could, in fact, be done. She told me about TSA cares and that Gideon’s liquid diet could absolutely be taken on board the air craft even if it was over their 3 oz rule.
But of all the things she said to me, it was her last statement that haunted me in the coming months. Before parting ways, she put her hand on my shoulder and lovingly said, “Make the plans and take the trip. You’ll regret not trying.” I came home and told my husband the story. He asked if it could wait till 2024 and I obliged.
Unfortunately, in February of 2024 Gideon got super sick. So sick that he stopped eating for 7 days and was extremely dehydrated. Since you can’t treat a virus, we were treating symptoms. In desperation I called palliative care and began what I thought was going to be a repeat of 2019 when he was on hospice. But by the grace of God alone, Gideon turned a corner and began a 6 week climb back to his happy, healthy self (without a hospital stay). So I did what any rational mother would do when he got better…
You see for 11 years, I’ve told myself that I’m not a mama who lives in fear. That’s why we take Gideon with us everywhere we go- grocery stores, restaurants, church, road trips, etc. It’s why we went on to have 2 more biological kids after Gideon. But after that divine encounter with Effie, I realized that I still have pockets of fear that I have not turned over to the Lord. 2nd Timothy 1:7 reminds us that those fears don’t come from Him.
So here’s where I’m landing the plane on this blog. We just got back from Turks and Caicos. ALL SIX OF US!
And Gideon did amazing!!! I could tell you how wonderful it was… Or you could just see for yourself! Click the link!
