In March, I was told Josiah needed a sleep study.
The Doctor who suggested it explained 50-75% of individuals with Down syndrome have sleep apnea. Based on Josiah’s poor sleep habits, his ability to fall asleep during the day in very strange positions and the immediacy with which he wakes after being in a deep sleep, it was recommended he have it done.
As the Doctor was talking, I put my fingers in my ears and hummed. How would we ever get a sleep study done on this kid?
I was assured Texas Children’s Hospital would be up to the task. I just smiled.
On Monday, Josiah and I ventured out for the first step in the process, a sleep study consult with the professionals. They would meet Josiah. I would learn what to expect and exactly how they were going to work their magic on a boy who is extremely resistant to most anything hospital related.
Couldn’t hurt right?
I pulled up to the main doors of the hospital and opened Josiah’s door. He refused to budge. I unbuckled his seat belt. He pulled it back around him. I handed him his back pack. He threw it on the floor.
Thinking quickly, I slung my purse across my neck, grabbed Josiah’s backpack and stooped down next to him. “Mommy Express Train”, I announced, something I haven’t said in years, but thankfully remembered at this crucial moment. Without hesitating, Josiah joyfully climbed on my back.
Though he has shed the 42 pounds gained in the fall, these arthritic knees aren’t really up to the task of carrying my 14 year old son much more than a few feet. I could feel the stares from other mothers as we made our way into the lobby, but pretended not to notice. Isn’t this what all mothers of non-compliant teenage sons do?
Just a short elevator ride to the 9th floor and all would be well.
Josiah adores elevators. He would ride them all day long if we’d let him. When he sees one, he makes a bee line for it. This would be a cake walk.
Except, it wasn’t. Apparently, that day, Josiah decided he didn’t like elevators anymore.
When the doors opened, he pulled back. I gently nudged him forward, holding his arm in mine. We managed to get on just as the doors were closing. I stood behind Josiah, holding him tightly in a big squeezy hug, encouraging him with a soft, soothing tone.
Have you ever been in a crowded elevator, trying to make your way up to a floor near the top of the building on a busy morning? If so, you know the elevator rarely glides quickly all the way up to your floor. Those darn doors open and close, open and close, every few seconds it seems.
Josiah took each opportunity as a chance to escape.
The instant the door opened, he’d drop to the ground, thrusting an arm or a leg out the door, trying to break free. He’d hit himself in the head repeatedly, scratch me and grab for my hair as I scrambled after him, scooping flailing body parts in my arms, half lifting, half dragging him back in, hoping not to draw much attention.
Once back inside, I’d pray the doors would remain closed until we reached our floor. They never did. As soon as they opened, he’d burst out again.
People offered to help. Clearly, I needed it but had no idea what to say. In the midst of the mayhem, I simply said, “Thank you. I’ve got him.”
I didn’t.
We only made it to the 5th floor.
At that point, the battle was over. I was exhausted. Josiah had bested me. He needed to calm down. I needed a break. No more elevator. I got that message LOUD and clear.
I found the stair case and we started to climb.
Started being the key word here.
You truly are the bravest mom I know ! As I was reading the part about the piggy back ride – I just know how you felt Sandy – I just kept saying “God bless you” as I read this ! Chad needs a sleep study too – we got our script back in the FALL and I have been procrastinating for this same reason 🙂 This will be Chad’s 3rd visit back to his Neurologist (this week) in which I will have to tell her “no” we have not met with the sleep study team yet – BUT I’M WORKING ON IT – yes, the nerve and will to deal with exactly what you go through or at least a portion of it. The last time we were at Akron Children’s we rode the escalator at least half a dozen times then I ended up chasing Chad down a super long hall but thankfully not a busy area 🙂 Our Neurologist says they have a great sleep study team at Children’s – in the past she would not have felt confident to make the recommendation for her patients with Down Syndrome but now she does and has 5-6 patients who have gone through and benefited ! Craig has a CPAP and his in home respiratory nurse said they now can do testing at home as I had mentioned we needed to get our son tested – just a thought for you. Your post has inspired me this morning and I will set his appointment for June ! God bless you and your beautiful family 🙂
Oh Heidi! Thank you for your comment. It truly helps to know we are not alone in this ever interesting, character building adventure! Why do we even attempt these appointments alone? So wish we lived in the same area. We could support one another through these challenges. Hey, there’s an idea! Moms on a Mission, linking arms literally (to create a human barricade….lol) when attending Dr. appointments with our kids. Backup is oh so necessary. Josiah’s Dr. did mention an alternative which would be to have a pulsox machine during the night here at home. It was also suggested we could do a ‘Poor Man’s Sleep Study’ which would be to video tape him through the night. Ummmm…NO! That’s when I would be sleeping, thank you very much. Good Luck to you with Chad’s Neurology appointment. Hope you are able to get the sleep study done eventually. Let me know how it goes. We’ll just wait for you to lead the way and provide guidance and wisdom before moving forward another step with ours! : o ) God bless you!!!
OMG – love that… Moms on a Mission !!! We have to pursue that idea 🙂 I can’t help but think when I read your posts – if you were still here I would indeed link arms with you and help in those situations ! The moral support in “those moments” would be great !! I sometimes wish doctors would make house calls 🙂 The whole process, it is not without worry from the moment we get out of the car… the walk into the building, the first elevator ride, the long hallways, the second elevator, THE CHECKING IN PROCESS WHEN HE IS SITTING IN THE LARGE AREA AND I HAVE TO GO TO ONE OF THE CHECK IN DESKS – I STAND WITH ONE EYE ON THE CLERK AND ONE EYE ON CHAD AND READY TO BOLT TO HIM IF NEEDED), the weigh in and blood pressure point, then finally the doctors office (and the w.a.i.t………) then the process in reverse…….. you are indeed correct…. character building :):) Never a dull moment 🙂 I love your insight and sense of humor ! Prayers for peace, safety and calmness <3
Once again, you need a cape. Several, actually, including one with leg holes should you ever need to piggyback again. Wish I could have seen, that with his long legs dangling behind…we gave piggyback rides for many years too. Neurotransmitter testing and balancing cortisol helped dramatically change life for us. Maybe would help? You are in my prayers often.
I love that you push through and also that you know when to cry “uncle.” You are so wise, Sandy. Thank you for sharing with us.
When you are done with YOUR cape maybe I can borrow it Kim!! I’m thinking pumping iron and ingesting steroids might be the answer. If I beef up, it’d be no problem to tote this boy around!
THANK YOU for the prayers!! Praying for you guys as well! Any wisdom at all is all God! Can’t take credit for that…but definitely could use more! HA! Every day is a fun adventure y’know? Yes, YOU know!! Many Blessings my friend!!
Bless your hearts! What a time for Josiah to decide he wants to participate in stair aerobics! I pray you get some answers at some point, and I pray you get some ice packs on your knees, Sandy.
Stair aerobics…love it!! : o ) Oh there is much more to the story. It gets better. I have a PLAN though for next time. In the moment I decided there would NEVER be a next time, but now a week later, I feel up to the challenge again. So greatly appreciate the prayers, Liz.
Onward to new challenges and triumphs!! Love you my sweet friend!