The last couple of weeks Noah has been tremendously difficult with sleep. It doesn't matter if he has a nap, doesn't have a nap, he is up multiple times every few hours. Chris and I have had a really tiring few weeks. The time change didn't help either. Noah was up just as many times and staying up at his usual time of around 7:30am which is now 6:30am. I know I'm not alone, I hear all the time that children like Noah are difficult sleepers. I still think he needs more room, I would love to believe that would solve it. His crib is just too little for him. But then with that comes more money we simply don't have. You can't just go get a regular toddler bed for Noah. Specialty beds, like the Sleep Safe Bed, cost thousands, and rarely are you able to get Medicaid or other health insurance companies to pay for them. It is such a broken system for special needs children. We cannot afford to get half of what we need, and help just isn't there. And most of these items shouldn't even cost what they do. A mother recently told me her son's electric wheelchair was $40,000. That's more than most vehicles cost new. And we all know that unless it's made from the world's most special gold and diamonds it isn't worth $40,000. But they can charge whatever they want. The world of disabilities means a huge dollar sign. It's unbelievable that it is set up this way. And I don't see positive changes coming that are going to fix it. So many of us are just stranded in our options.
Noah and I got out last week to walk around the mall. That's all I can do these days, I didn't even have the funds to get him a dairy queen. I went to Macy's found all these clothes that I adored for Noah, a cute little white sweater with a fuzzy dog in a Santa hat with presents, I even found a size 24 months held in my hands wanting it, carrying it around, only to tell myself we couldn't have it and I put it back. Macy's is starting to decorate for Christmas and the bug just bit me. Everything in that store for whatever reason, I just wanted to take home. Christmas dishes and plates, decorations, clothes for Noah, toys... I felt like Santa without a Christmas bag. And since that mall visit, I've just wanted to skip Thanksgiving and put the tree up now. I know that is terrible. I always liked Chirstmas, but never this much until Noah came along. Maybe I just feel like I have to make up for Christmas of 2008 when we were all struggling to survive and recover after Noah's birth. I was so drugged I can only remember watching pieces of the parade on television and someone coming to give me a rosary and hold my hands and pray. That's all I have of that Christmas... nothing. No gifts, no memories of a beautiful meal, no Christmas songs, no joy, no baby in my arms. I never want to spend another Christmas feeling helpless, hopeless, and so empty.
I've felt very alone these past weeks, not because I am. Sometimes you just realize that everyone else gets to go on with their lives, and Chris and I will remain forever in this special needs world. It's been so very wonderful to read all of your sweet and loving caringbridge guestbook and blog entries. I am unable much of the time to respond to many emails and comments, but know that I read them, and it touches me beyond words. On my most difficult days, it always is so reassuring to know that even though we might feel alone, we are not. That all around the world you care and you haven't forgotten about little Noah.
I had a free coupon for a hamburger at McDonald's. I was hungry after one of Noah's therapy sessions and thought I would use it, but when I got to the drive thru, there was a man walking with a little tiny white dog. His clothes were worn, his shoes had holes and I knew he didn't have a home. I gave him my free hamburger because I knew he needed it more. And I felt great all day, because I was able to sprinkle joy. And it reminded me of this article I read. It's so important to me that I'm able to show and teach Noah about kindness and love for others.
By Steve Goodier
"Sprinkle joy" said Ralph Waldo Emerson. And at least one little creature seems to do just that.
There is a small bird in the northwest part of the United States called the ouzel, or the American Dipper. This unusual bird lives around fast rushing water, sometimes nesting behind water falls. It has been seen flying in and out of white water rapids of mountain rivers that crash and splash through steep and rocky canyons. It loves the violent, noisy, chaotic life of the rugged river environment. And through it all it sings! When rains falls in sheets, when wind blows in a violent fury, when other birds huddle in sheltered nooks against the rage of the storm, the dipper frolics in the tempest and blissfully sings. Don't you love to be around people like that? People who don't wait for circumstances to change or for happy times to come before they laugh and sing? People who can be happy in the confusion and chaos of life? These people do not expect life to make them happy. Nor do they spend time looking for joy - instead they decide to give it away. Like that remarkable little bird, they can be found in the midst of life's turbulence, enthusiastic and hopeful.
These resilient people teach us an important lesson about survival. They show us that people who "sprinkle joy" grow stronger. Sprinkled joy immunizes them against despair during difficult and tumultuous times. They actually weather storms better because of a lifetime habit of approaching difficulties with a glad heart.
I don't know that sprinkling joy makes me weather my storm any better, but it is what God would want me to do, and I know he smiles when I try with all I have.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.