2013-05-16 09:14:38 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.
Since our journey with Baby Jude began, I have been invited to several support groups. (P.S. When you are repeatedly given a flyer listing a support group date and time, it just might be a hint that you should attend. Thank you, Help Me Grow Tim. You are nothing if not subtle.)
I tried it. I went to a support group for parents of children with disabilities, specifically cerebral palsy. I went with an open mind. It was all moms in the room, with the exception of one dad in the corner. (He didn’t say much.) They were very nice ladies who are extremely loving and dedicated to their children.
Each mom told her story - what her kid’s special needs are, which docs they see, what needs of their kids aren’t being met, yadda yadda yadda. By the time the proverbial storytelling torch was passed to me, I had heard so much sad stuff, so many challenges without victory, that I was deflated. My old standby of social awkwardness disguised as well-timed, sarcastic (yet somehow charming) wit, failed me. I was only able to stumble through a disjointed version of Baby Jude’s story. I could hear myself talk as if I was part of the audience. Granted, by comparison to the challenges other families face, my narrative sounded like a walk in the park. But listening to myself, I sounded like a long and drawn out sad sack story.
After 2 hours, I was emotionally drained and committed to never sitting around complaining again. The only upside was that no one tried to hug me or make me cry. I had vowed if anyone did, I would kick ‘em in the shins and go home. (See the charming wit I was talking about?)
I determined that support groups aren’t for me. That is until we visited a bunch of horses, dogs, cats and two phenomenal women at Victory Gallop.
Baby Jude, Jane and I were invited to visit Victory Gallop (thank you, our dear Laurie!). In a word - incredible.
The place is gorgeous, welcoming and incredible. After a quick, warm intro to Kim and Sue (the aforementioned phenomenal women) Jude met Petie the Pony. Next thing I knew, Sue and Kim had Baby Jude up on good old Petie and they were off.
It was amazing. They positioned his legs perfectly. It was as if they had been with us at physical therapy for the past year. They held him up there tightly and securely and led Petie around the property. Baby Jude was riding a pony!
My mind raced. Will he like the movement? He loves to swing (courtesy of SPD - sensory processing disorder) but hates the unsteady feeling and movement of being in water (again, courtesy of SPD + visual impairment.) So will the up and down sensation be “too much?” Will the position help stretch out and work his core muscles, which are so tight with high tone, yet still weak? Will the position help strengthen his hips as we work to pull the “frog legs” in?
If he likes riding, and Dr. M (Jude’s physiatrist at Akron Children’s) gives the green light, will Victory Gallop accept us into the program? If all the stars and moons align and Baby Jude is a go, can we afford it? (I suspect our insurance will deny this claim!)
Like I said, my mind was racing. It usually does. Especially when my kid, who just learned to crawl at a year and a half old and who is not in the same hemisphere as walking, is on the bare back of a freaking pony! I told ya - incredible.
Sue and Kim asked me a few standard questions, typical diagnosis stuff, a little background. But they were not invasive or overly curious. They mentioned the medical forms I will need to give Dr. M for release, the application to the program, etc. They engaged Jane, Baby Jude and me.
Sue and Kim didn’t dwell, they didn’t seek a sad sack story. They shared more of Victory Gallop’s story rather than wanting to hear all things Baby Jude. They laughed. They were unbelievably generous to and inclusive of Jane and made us feel right at home. (Janey got to brush Petie and water Champ and the other horses.)
I don’t need to go to a formal support group. I don’t need to read every book, article and website about the “emotional rollercoaster of raising a child with a disability.” I don’t need to “commiserate” and compare “war wounds” of failed Medicaid applications and appeals, waiting lists for programs and equipment, and medical/developmental conundrums.
Traditional support groups work wonders for many people, and I encourage folks to check them out. I will definitely keep an open mind to try another in the future. But for the time being, a support group in the coffee drinking, guest speaker, traditional sense is not for me.
Baby Jude, Jane and I found more support this week. We found support, possibilities and a whole lot of love among horses, barn cats and a baker’s dozen worth of dogs. I pray that Kim and Sue and the rest of the Victory Gallop family know just how incredible and indelible of an impact they have.
These ladies grabbed my heart when they simply smiled and grabbed my Baby Jude, carefully held onto him and gave him the ride of his life. On the back of Petie the Pony. Incredible.
Grateful, Prayerful & Hopeful.
Read more about Baby Jude and Jane from the rest of Sarah’s blog, Hey Jude!.
(8 a.m.-4:30 p.m.)
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