Life with holoprosencephaly
Falling asleep in a small tent cuddled with your man, with 2 little ones gently snoring next to you, your dear friend and her beautiful daughter steps away in the RV, your dogs in a tent next to you, all lulled by the gentle ebb and flow of the ocean…priceless.
Our friends from Chile, Cybell and Catita, are here, in LA!!! They’ll be staying with us for a month. We have lots of fun activities planned – Disneyland, LA & San Diego Zoo, Seaworld, Legoland, Santa Barbara, and much more 🙂 Our adventure starts tomorrow – we will be driving down to Carlsbad to go beach camping in the RV! The boys are already there – they left this morning and are already having a good ol’ time. We’e been waiting for and super excited to have our friends here with us – and can’t believe they are here now and the adventure begins!
18 gallons of gas, 2 short 10 min stops, 1 soy latte with sugar-free vanilla and 1 shot of coffee (soy chai latte for Nathan), 2 jack in the box burger and fries, 5.5 hours, and 3 movies later (tinker belle, nightmare before xmas, and lilo & stitch 2), we made it home.
I feel victorious. I feel exhilarated. I feel hopeful.
And here’s the thing. If you asked me – what did Nathan gain this week? It doesn’t look like much. Hands more open. Arms less tight. More flexion, less extension. More interest and ability to play. Nothing major. A couple new words.
But he LOVES it! I can’t tell you how much that little boy loved his lessons. Every time he saw Cheryl, he lit up like the sky on 4th of July. Whenever he got on the table he was happy, ready to learn. It’s like he’s been ready and waiting for 4 years for someone to “unlock” him. He was so hungry to learn.
THIS is a therapy that we can do WITH Nathan, not TO Nathan. And it’s a chance for Nathan to learn and develop on so many levels. And, over time, maybe he’ll improve, maybe he won’t. Frankly, I don’t care. My boy enjoys it. It makes him happy. It gives him a sense of accomplishment. Every time he managed to do something, even the slightest movement, he would look up at me – “Mommy, did you see me? I did it!”
And today, as we were driving home, and we gave Nathan a cup of chocolate almond milk with manuka honey and rice cereal, which he loved, and when it finished, he said “mo mo mo mo mo” over and over, until we gave him another cup – I was thrilled beyond belief. Every penny and effort we’ve spent so far was worth it, for that single moment when my boy could tell me he wanted a 2nd cup of milk. Priceless.
So the million dollar question is – is this IT? Are you going to do anything else?
The answer – YES. I am sticking with my plan. I believe in my plan. It took me 4 years to figure it out. It feels right for Nathan, it feels right for me, it feels right for my family.
Feldenkrais (ABM), ABR, CME, mHBOT, LRI (laser reflex integration), and Gtherapy. This is our combo. This is sustainable for us. This targets everything. These work for Nathan. Sounds like a lot, but it’s not, most are passive and gentle, all work WITH Nathan.
I remember asking my meditation teacher once…will my plane ever take off? Will I ever get off the runway and climb climb climb until I can soar through the limitless sky? And he said…it may feel like you’ve always be on the runway, and that you’ll be on it forever…but trust me, one day you’ll take off, and even lifting your front wheels will feel so glorious, that slight elevation will change your life. And oh, when you soar…
So here we are. Slightly elevated. Just beginning. But we have the right tools on board. So off we go!