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). š
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.. š
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.
We are roughly one month away from our annual trip to Joni and Friends Family Retreat at Camp Allen! It’s the highlight of our year and we are counting down the days until we can be reunited with families who experience life like we do.
A few weeks ago, Kevin and I had the opportunity to share our testimony of how Joni and Friends has impacted our lives and the lives of our children. I’d like to share a small portion of what we said at that J&F event in Houston.
…Being at family retreat really wrecks you in the best possible way. This summer will be our 9th camp and I already know whatās going to happen when we pull up and see the welcome parade. Iām gonna lose itā¦like the donāt-wear-make-up-because-Iām-about-to-ugly-cry kind of lose it. Iām going to see the Folmars, the Strouds, Becky & all the STMsā¦and Iām going to ball my eyes out. However, itās interesting because when we leave after that 5th day, I donāt shed a single tear. And I have short theory about this-
Upon arrival, it hits me, just how much my parched soul has longed for a break; an oasis from the day-to-day tasks around Gideonās care. I know that God is about to rain down manna through the hands and feet of these precious STMās and I just feel overwhelmed with thankfulness. But when itās time to go home, I leave with a deep-rooted sense of fullness; the kind you feel after a feast. Thatās because Joni & Friends provides not only incredible food for the stomach and but healing nourishment for the weary soul.
Several years ago, it dawned on Laynie that we only get to go to Family Retreat as long as Gideon is alive. And right then, at the age of 7, she loving told me, āI hope Gideon lives a long time so we can always go to family retreatā¦ but if he doesnāt itāll be okay, because we can still come back as STMās, right mom?ā
We may be partial because we are on the receiving side of what camp has to offer for now, but we believe there is not a more worthy ministry to support than J&F. All those years ago, Laynie understood the impact that she could have by volunteering at Family Retreat. Turns out, she didnāt have to wait for her little brother to go home to be with Jesus; because last summer, she attended camp as an STM, choosing to serve, rather than be served. And ever the leader that she is, she asked her cousin Addison, to volunteer alongside her.
As we drove out of camp, we asked the girls to tell us about their experience serving. Laynie led the conversation with, āIāll never go back as just a family member. I only want to go if I can serve ā¦and I’d like to serve all 3 weeks if possible.ā Both our daughter and niece left Camp Allen with a greater understanding of what it means to be the hands and feet of Jesus. And theyāve been counting down the days until they get to go back!…
This ministry continues to change the trajectory of our entire family. When we started attending camp, it was because we just wanted a break. (And don’t get me wrong, we are still BEYOND grateful for the daily (9 am- 3 pm) respite that Kevin and I receive!) However, each year that we attend, the Lord continues to reveal that he’s doing more than just giving our family a fun and relaxing experience. He’s changing the hearts of my children.
Josiah (age 7) has already claimed that one day he will be the STM for his friend Aaron. And I have no doubt that he’ll reach that goal.
We are so thankful for the opportunities Joni and Friends have provided for our family throughout the years. The girls are eager to serve in July and I’m certain God is going to grow their faith and compassion even more.
If you’d like to support Laynie and Addison serving at Family Retreat this year, this cost is $475 per person. Below are the links for their individual fundraising pages. 100% of what is donated goes directly to their total… No fee’s are taken out.
