2013-05-15 09:24:26 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.
1. The beginning of a new year can be as exciting as closing the door on a rough one. 2011 was a long year, many changes, many lessons learned, and many happy times too. As grateful as I am that 2011 was as blessed as it was, I am equally grateful that it is over. The first day of the new year started out with a bang. Vance changed Baby Jude’s diaper, and he wasn’t asked, begged, coerced or guilted into it. Jane made sure to point this out with a, “It MUST be a New Year, Sarah, Vance just changed the baby’s diaper and you were home even.”
2. Winter break from elementary school is far too long. While some of you may relish having your kids homebound for 2 weeks because they’re typically always on the go, my kids are 4 and 2 years old. They aren’t on traveling sports teams, they don’t lock themselves in their room in preteen angst, and they don’t have overnights at friends. They are 4 and 2. Their favorite spot in the universe is with me, specifically on a hip as I hold them.
Don’t get me wrong. I love the time with my kids. But I got spoiled in the past few months with the 10 hours per week I have when they are at “school.” So, I spent 2 whole weeks, 24/7, bludgeoning to death the threat of Santa skipping our house in desperate hopes of decent behavior. Whichever school administrator came up with this timeframe clearly has older children they are hoping to keep captive for family time or a vacation home in sunny Florida where his family can spend a deliriously happy 2 whole weeks.
3. Sleep Studies are for the birds. The idea of sleeping with several wires, leads, electrodes, cotton balls and a hair net connected to one’s head is not the graceful way we hope to slumber. In fall of 2011, Baby Jude had a sleep study done for myriad reasons. Not sure how much I will share in this regard as his current sleep needs/issues have become a major part of our daily routine, and the medically assumed cause is a difficult one for me to process, much less communicate respectfully. When it comes to your child’s disabilities that you didn’t cause and can’t fix, some things may be better left unsaid. For now. Remember when I told you about the parental level of acceptance? This parental level of acceptance is an ongoing process for me. As wonderful as all of the Sleep Lab folks are at Akron Children’s Hospital, sleep studies are for the birds.
4.The Barbie Dream House is also for the birds. Since when did Barbie live in a “Dream TOWNHouse,” complete with a Jacuzzi, working elevator, flat screen TV that mechanically emerges from a working fireplace, a loo with a flushing toilet, and a door bell that rings? In my day, I was lucky to have a weeble wobble or two to use in a Fisher Price A-frame house (neither of which were part of the same play set). Times have changed. And Barbie is kickin’ it in high style.
5. Helping the people who help Baby Jude is incredibly rewarding. Baby Jude and I worked hard to support the passing of the Summit DD Board renewal levy in fall 2011. The levy passed by the largest margin of any social services levy in Summit County. And while I can’t directly give him credit, I like to think that Baby Jude earned his keep at the DD and helped spark some community interest. Thank you, Summit County voters.
6. Horses = MAGIC. Baby Jude was lucky enough to be sponsored to participate in Victory Gallop’s therapeutic riding program this year. He started on Petie the Pony and graduated to Rufus. Then Jude got sick a couple of times. We were not the best participants ever, but Victory Gallop and their crew never gave up on us. Jude had several minor procedures/surgeries during his riding season and we had to skip a lot, but they never gave up on us. Kim, Sue and the kids welcomed us back each and every time Baby Jude could make it. I’m not sure he will ride in the Kentucky Derby one day, but I can tell you that his core muscle strength, ability to move hand to hand across his body on command, and overall calm was dramatically improved by the time he was allowed on horseback. Victory Gallop and therapeutic riding is incredible, for both physical disabilities and sensory needs. Since Baby Jude is a 2 for 2 in those categories, therapeutic riding is a Godsend.
7. There is a teachable moment in most conversations with Jane. Especially when the conversation revolves around our skin color. We have very different skin color. I am translucent, Jane has the most beautiful brown skin ever. And she now knows the difference.
One of her favorite stories is Dr. Seuss’ Star Belly Sneetches. We read it again a few weeks ago and Jane said, “Sarah, I might have a star like the Sneetches. And you might not, and we might not match. But we’d never get our stars taken off like they did, cuz our stars are in our hearts. Not on our bellies. And that makes us a family.”
If I were to share anymore lessons I learned, I would border on either a therapy session or plain old rude. So I will end here.
I thank every person who takes a moment to read my Janey Bug and Baby Jude stories, tales from the “crypt” if you will. I hope you enjoy them. I know that I learn from each and every story, tale, lesson, blog that I read. I hope the same that you get a laugh from the wild and wonderful Sanford world.
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