Do you know how long it has taken me to come to grips with that concept, accept that it's true, say it out loud. A brain injury. Her brain has been permanently injured. Of course this is a result of the radical surgery we chose for her. It's like a shot to my heart to think that she has half of a brain because some surgeon said it would be the best course of treatment to stop her seizures, and we as her parents said 'OK'.
Oh, believe me, I know it was the right decision, there is not a day that goes by that I don't thank God that we had this option for her. However, there are moments where it stings, really stings.
I bring this up because this Summer I attended my first ever Hemispherectomy Conference in Anaheim, CA where I met other hemi families, doctors, specialists, scientists, therapists and hemi kiddos, some hemi adults too. It was a most moving, educational, beneficial, overwhelming, emotional experience. In the workshops I sat through, many of the presenters talked about 'brain injuries' and gave ideas, suggestions, solutions for how to help our kids recover, grow, reach their full potential. And that's when it all finally hit home…Nora has a brain injury.
From the website of a new exciting non- profit 'The Brain Recovery Project' "Very little is known about how the healthy side of the brain recovers the functions lost when the other half is removed. Not only are proper therapy models for these children unknown at this time, but the amount of therapy each child receives is wholly dependent on the parents’ income, insurance coverage, availability of state-funded services, and access to qualified therapists. As the child gets older and encounters new challenges as they enter adulthood, resources are few and limited. Parents have little guidance on what can best be done to help their child."
With the help of the Brain Recovery Project, we are learning more and more about what this really means for our kids. I could go on and on about this group, and I will at another time, I'll just say that this organization is helping fund research to better understand the tremendous neuroplasticity of the brain, and we are grateful for their work.
With all of that said, first order of business is just quickly to let you know that we do have another fundraiser planned for Nora, as we move into trying new methods of therapies to help her reach her full potential. Comedian Dave Reilly is back and better than ever..this time the show will be on Friday, October 24 at 7p a the Knights of Columbus Hall in Milford, CT. Tickets are only $25 in advance ($30 at the door) and there will be great raffle prizes, too. (If you know of any organization willing to donate a raffle prize please email me email@example.com and I can send you a request letter). Tickets for the show are available online at http://laughfornora.bpt.me or you can link right from our home page of our newly designed website www.goodfornora.org. This event is for adults only and it BYO drinks and snacks.
Now that that's out of the way, I cannot believe Summer is coming to a close. Nora will start Kindergarten tomorrow…YIKES!! I vacillate from being completely ready, to waking up in the middle of the night having panic attacks about the whole thing. There just seems like so much information to share with new teachers, aids, nurses and therapists about Nora's limitations and abilities such as her compromised vision, and right sided weakness, balance issues and still toileting challenges. The fact that when you see Nora at first glance she looks perfectly fine, is a both a blessing and a curse. We will be heading to the school later today to meet with the classroom aids (the only folks we have not already met) to just say hello and make sure they understand what Nora needs….and maybe a little bit about what Mommy needs, too.
Regarding Nora's other progress, she has picked up quite a bit of bilateral ability this Summer just in working with therapists and wanting to be more independent at home. She's working hard at putting on her foot braces and shoes, and removing them, and also at getting dressed and undressed. Put a tight sock over your dominant hand and try completing everyday tasks with your non-dominant hand just for a few minutes…you'll understand what this amazing little girl faces daily.
Nora has been eating like a champ lately, must be a growth spurt because she's gotten so heavy that I can really no longer carry her. We still use g-tube for liquid at this point, and we'll keep it in for as long as we need to. I'm not as concerned as I used to be about having it removed. She's growing, and that's what counts!
I’m sure there is lots more I’m forgetting but the net net is that we've had a really nice Summer, and we're starting a new chapter with Kindergarten and an almost empty nest, too. Ali is back up at grad school at Uconn, and Lizzy just left for Western. It's transition for everyone.
One final update, for those of you who knew (or knew of) Dottie Hydeck, my dad's mom, she passed away last week, and now will join my grandfather Mike Hydeck Sr in eternal peace.
Thank you again, for your support, your love and your kind words. May God continue to bless you and your loved ones.