From dreams of the gridiron to the reality of a Gait Trainer

2013-05-15 14:43:13 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.

Lots of baby boys’ dads dream of raising a football star. A strapping young buck who can tear up the turf.  I suspect that Vance has that dream for Baby Jude too.

The state of the nation is that Vance needs to check that dream at the door, because it’s time to go from dreams of the gridiron to the reality of a gait trainer. The reality, for now, is that Baby Jude has a potential for walking - with the assistance of a gait trainer. Not exactly how a Dad pictures seeing his son’s first steps, eh?

Ever since this whirlwind of unexpected adoption, LONG foster care stint, doctors, diagnoses, health insurance claims, therapies, IFSP (Individual Family Service Plan) and the like, I have taken the lead as Baby Jude’s primary caregiver.

Maybe I took the lead because Vance works many, LONG hours to provide (especially the aforementioned, heavenly health coverage).  Maybe it is because he has to hang up his fatherly football dreams for now and accept a statement like, “Your son has a potential for walking.”  That is a far cry from the dream statement: “Starting for The Ohio State University, Jude Sanford” (and the crowd goes wild.)

Maybe it is because, when Vance is home, I hand him a chore list a mile long of house things that need attention or fixed. You’ll never catch me cleaning a gutter or waiting in line for a tire rotation. And you won’t catch him fluffing and folding the family’s clothes for the week ahead. It’s just how we roll.

Maybe it’s because it is just IN me to be a caregiver. It’s what I do. I take care of folks.

You’re hungry? I’ll whip you up a pot roast and fresh baked bread. You’re thirsty? Pick your poison. You’re sick, injured or need a hand? Here, they might not be freshly manicured, but my hands are yours. Take both.

I was 14 years old when I told Angie, a lifelong bestie, “When I grow up, I am going to adopt a child with a disability.” She asked why. I said, “Because I know I can do it.”  (Note to self: Be careful what you wish for. Kidding, kidding!)

That same year I basically moved into my Grandma’s home to help her out (Alzheimer’s) until she moved into my mom’s home.  At 18, I moved into Grandma’s nursing home room as an unofficial aide for, what turned out to be, her last summer with us.  She died the day Angie (the bestie) and I left Akron to move me into my freshman year dorm.

When my mom’s health began to fail, I took care of doctor appointments, prescriptions, grocery shopping, daily visits, and lots of phone calls. I insisted that Vance and I buy our first home with a full bed/bath on the first floor so she could move in and move around easily.  She never moved in. After a handful of heart attacks, my mom died. With the help of my sisters, I settled her estate.

I take care. It’s what I do.

When Jane came home, Vance loved on her like crazy. He still does. I took care of the baby stuff - feeding, bathing, diapering. Not because he wouldn’t, but because I wanted to. Vance is wonderful with kids. Babies just aren’t his thing.

On to Baby Jude. I very happily became a mom of 2. Jude’s medical stuff came naturally to me.  I am not sure if I edged Vance out of the picture or if he bowed out. Or if it’s a little from column A and a little from column B.

I took Baby Jude’s caretaking by the horns.

Doctor appointments, evaluations, therapy sessions and team meetings - I can raise my hand for perfect attendance. BCMH (Bureau for Children with Medical Handicaps) Letters of Approval, letters of medical necessity - done and done.

Jude’s exercise routines - I can perform them in my sleep. I order his prescribed formula, thickener and supplements by the month.  I have charts and binders that serve as a second Bible. Our insurance claims unit reps – we are on a first name basis.  I LIVE by my dry erase board calendar.

Baby Jude and I are attached at the hip - figuratively and literally. His favorite perch is my hip... as he does not yet walk.

Which leads me back to the gait trainer. Baby Jude will use this to learn to stand (brakes on), and God willing, to eventually learn to walk.  We are grateful to his team for recommending, helping with paperwork and securing the gait trainer.

We are grateful for our health insurance for providing it. There is a lot to be grateful on a big day like Gait Trainer delivery day. It’s one for the baby book, for sure.

All of us went to his gait trainer fitting at Akron Children's Hospital this week - Vance, me, Jane and Baby Jude.  I can't tell you why this seemed important to me that we all go, but it did. Not that I couldn’t do it solo, I could have.

But I wanted Vance to see Baby Jude in action. To meet some of his team, to help me learn the straps, locks, wheels, the bells and whistles of this gait trainer.

I am over the moon grateful that Vance and Jane came to the appointment. Vance was present. He listened to the instructions on the adjustments and he asked questions about using the trainer with Jude. He was totally out of his comfort zone. But, he did it anyway. Over the moon grateful.

Vance drove us to the hospital that morning, but Baby Jude and Janey Bug’s Daddy? Well, he pushed his son’s new “wheels” out the door and drove his family home.

Grateful, Prayerful & Hopeful.

Read more of Sarah's Hey, Jude! blog.

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