Tuesday, November 20, 2012

A Time of Thanks

Noah in his New Hi/Lo Chair
Noah's Hi/Lo Chair without Tray
There are some days where I wake up and think there aren't enough hours in a day to accomplish all I must do for Noah alongside tending to regular household duties. I almost need five of me. Noah had therapy yesterday and he was a bit cranky. Who knows why... sometimes he feels like working - sometimes not. We gave him a quick lunch and then his equipment vendor came to deliver the much prayed about Hi/Lo base feeding chair. This seating system I thought would never come - one I had anticipated a long drawn out battle with Medicaid for. Finally feeding safety for Noah. It did come needing some adjustments like a shorter footrest, different head rest accessories and a broken lateral piece, but it's fully functional and those are things I think can be easily worked on that will take minimal time. Noah had his first meal in it last night and breakfast in it this morning and it went well. It has a lot of buckles and I struggled a bit as it's new to me and something I have to learn. It's a bit hard to look at this big bulky thing in my kitchen and realize that Noah needs something like this for his daily living needs. It does look way more "handicapped" looking than his special tomato seat, but I know he'll be safer in it and that I know he can't fall out of it. But I look at it and my heart still aches. It's like all this equipment is weighing heavy on my heart that somehow it's just a constant reminder of how severely affected Noah truly is. He wasn't one of the lucky ones that simply got away with only a mild limp or a speech impediment. Noah is completely dependent on me for every single aspect of his life. And I just can't help but wish things were different for him. He should have had a body that worked - he should be running around the Christmas tree trimming it with me.

The equipment vendor also brought Noah a trial walker but it was too big, so we'll have to wait on a smaller model. I remain hopeful that it is still a piece of equipment that might work for him. We're also trying to troubleshoot more recent problem development with his Britax Boulevard car seat that he has now started to get his head out of the headrest blocks and leave his head hanging sideways while I'm driving. Something both scary and a huge safety concern. It sounds like a appointment is likely in our future to explore some options. We don't have a handicapped accessible van and we can't afford one, so a car seat is our only option right now. We will also need to give some thought in the bath chair department for Noah as I think he's really outgrown the First Steps Baby Highchair that I was using in the tub for him.

Our house feels like it is closing in on me - literally. Noah's pieces of equipment are cumbersome and heavy and we lack wide doorways, and hard flooring in our home and even the storage or a place to house all of the things he needs for daily living. It takes two people to lift his feeder chair or stander anywhere which means they are pretty much stuck in a particular room and stay parked there. I need a mudroom for the dogs so I can eliminate the baby gates... we need a ramp... we need a handicapped accessible house and our current home is anything but. Dear Santa please bring me a house stretcher and handicapped accessible home!

We are growing increasingly excited about the arrival of Noah's Service dog. We've think we have a name picked out pending that the company feels that they've chosen the perfect dog to match with Noah. And it still looks like Noah's dog will arrive around his birthday or the week of Christmas. It of course will mean lots more hands on work for me as I work with this dog to pass puppy good citizen weekly training tests until it leaves home for many months for advanced skill training and to pass all testing and obtain certification. Which I am sure will be hard on Noah and the family emotionally as I know we will fall in love only to be a part for many months. But hopefully our love and sacrifice will bring great rewards.

Noah is ready to gobble down a big Thanksgiving dinner in a few days. I got Noah a little shirt that says: "I'm thankful for pie with extra whipped cream, turkey and mashed potatoes, and seconds please." Although Noah still enjoys his Thanksgiving pureed he sure does love this time of year and chows down with the best of them. And now he has a safe chair to enjoy his meals in. Dear Lord, as hard as this all is for me, thank you for answering that prayer.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.