Today I've been very frustrated with navigating things that are unfamiliar to me. I'm clearly out of my comfort zone, out of my element of everything I once knew and learned. Having Noah come along almost seemed to erase the life I used to know in every single way. I feel like I have to reinvent everything. How I look at things, how I feel about things, how I spend money, the list is really endless.
I got a list of websites today from Noah's therapists that are companies that we need to work with to get Noah therapy supplies and equipment. I posted all the sites on Noah's blog site for those wishing to know what families like us face. And mind you the costs never go away. There will always be something that kids with special needs need all of the time. Who would have even thought that they make special clothing even for children with sensory problems. I'm left with my hands holding my face, overwhelmed with a sense of exhaustion and a feeling like I'm carrying a load that is beyond my capabilities. And now I'm starting to feel like I'm robbing Peter to pay Paul every month.
The representative I was working with on Noah's bills at Children's Hospital is no longer there for whatever reason. And somehow all the notes regarding our outstanding account and my communications with them and Kaiser have disappeared, so I'm having to start the whole process over again with them trying to get more medical bills taken care of. So our grace period has somehow disappeared along with the person I used to speak with. I hate having this constant sick to my stomach feeling filled with fear and anxiety of what to do next. I keep trying to think outside of the box, but it feels like someone stuffed me in the silly box and sealed with it extra duct tape all the while laughing while I slowly suffocate.
Noah did make it to the Butterfly Pavilion yesterday with his great-nana. He had a wonderful time. He even made a break for it in his stroller. Yes he wheeled himself off when I turned my back to take a picture and landed in a rainforest of plants and flowers. The pathway must have had just enough slant to it that the stroller went and drove itself. He didn't complain, made no peep as we pulled him out of the plants. He was a good sport about it, but I suppose it's a good lesson that even when you think the stroller won't go anywhere, but the breaks on anyway.
Noah's becoming more fussy at therapy these days. They suspect because he knows I am there and wants to be rescued. It's not that he doesn't like therapy or that he doesn't enjoy playing, he just doesn't seem to want to play with anyone but me right now. His therapists say that's a normal baby developmental milestone and that around nine months babies tend to really want nothing but mommy. They had a double sided mirror at therapy and recommended that I may want to watch behind the mirror to see if that helps Noah participate in therapy, I tend to think it may make him panic if he doesn't sense I'm close by.
I looked into hippotherapy for Noah. I know that probably sounds a little absurd for an eight-month-old, but they say just the connection alone between a horse and a special needs child is an unspoken awareness at the earliest of ages. There is a place called the Saddle Up Foundation, that works with children with special needs. Of course this type of therapy is not something Medicaid will pay for either. Lessons are $60 each for a 45 minute session if you pay at the time of the lesson. If you prepay in a package of 4 or more then the price drops to $55. So one package of 4 lessons is $220, which is a $20 discount. $5 of every lesson is considered a tax deductible donation.
Parents like us don't want to leave any stone unturned. If there is something out there that will help, something that could bring us a cure, we'll move mountains to get there. We have to consider every possibility and every potential option that we have. I wish I could think on my feet faster. I'm so tired though from caring from Noah that I'm not as sharp as I once used to be, don't have the time to really devote to devising new good plans. So I wander through each day often aimlessly just taking things day by day.
Noah's Uncle sent this to us and I thought it was so cute and I'm sure if Noah could talk he'd give us just this type of advice:
Everything I need to know, I learned from Noah's Ark .
ONE: Don't miss the boat.
TWO: Remember that we are all in the same boat!
THREE: Plan ahead. It wasn't raining when Noah built the Ark.
FOUR: Stay fit.. When you're 60 years old, someone may ask you to do something really big. FIVE: Don't listen to critics; just get on with the job that needs to be done.
SIX: Build your future on high ground.
SEVEN: For safety's sake, travel in pairs.
EIGHT: Speed isn't always an advantage. The snails were on board with the cheetahs.
NINE: When you're stressed, float awhile.
TEN: Remember, the Ark was built by amateurs; the Titanic by professionals.
ELEVEN: No matter the storm, when you are with God, there's always a rainbow waiting.
Stacy, Chris & Noah