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I Can't Sleep
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"We all draw our rainbows with the colors we are given."
I couldn’t sleep tonight… I just had so many things racing through my head. It isn’t uncommon for me, so I thought maybe if I shared them with you, I would finally be able to get them off my chest and get some sleep. So here goes… There are so many things that I love and appreciate about Nathan, things that make him just him. But there are other things that I long for, little things that most might overlook or forget as the years go by, things that I will likely not ever have with Nathan. The way that Jacob’s whole face lights up with just a smile and goofy face from his mother, the way that William can entertain himself by crawling from one thing to the next all around a living room, paying special attention to anything that happens to be blue. The way that Shirley can nod her head and shrug her shoulders, and the way that no matter what color you point to, she always responds with “purple”. The way Eden says “Mama” in a crowded room and her knowing that her mother will come for her. The way Jacob can sit up in a high chair at only 5 months and the way that he plays and grabs onto the mobile hanging from his stroller. The way that Eden can push a button on a play phone over and over again with delight and ease after only seeing the toy for a minute, the same button that I have spent hours and hours trying to get Nathan to push on his own. The way that Shirley can sign as well as say “wa-wa” meaning that she wants water. How easy that would be to have Nathan be able to tell me what he wants when he wants it. The way Emily strains her neck to see out the side of her stroller to try to get a glimpse of Nathan with such amazement that there is another little person nearby. The way a 12-month old at Emily’s party would run up behind me and grab onto my shirt, waiting with anticipation for my response. The way Eden puts her arms out for her mother or grandmother signalling that she wants them to pick her up. The way Emily runs up to the side of a pond excited to look at the ducks, while her mother points them out to her…… These are all things that Nathan will likely never do, and these are all things that in 5 years, these kids will probably no longer do because they will have progressed and moved on to bigger and better things. Isn’t it amazing how such little things seems so insignificant to some until they can’t be done. I would give anything to have Nathan be able to do those things, and I realize that things could have been so much worse. I was first told Nathan wouldn’t survive, then I was told he wouldn’t be able to breathe without his breathing tube, then that he wouldn’t be able to eat without a feeding tube, that he would never know himself, know his parents, think, talk, walk, etc. Well, I can tell you that Nathan did survive… we have thousands of pictures to prove that. I can tell you that he can breathe just fine… anyone who has heard him when he is mad can tell you the boy has perfect lungs… I can tell you that he can eat… I just fed him tortellini, mixed vegetables and apricots for dinner and we’ve all heard about his triumph of drinking from a straw. And we have found out in his therapy that he will work for chocolate pudding. I can tell you that he knows himself… he perks up at the sound of his own name. I can tell you that he knows his father… he smiles when he hears his voice and his dad has an uncanny way of being able to put him to sleep. And although I doubt this idea almost daily, I can tell you that he knows his mother as well. The way he looks up towards me sometimes and if I say “hi”, he smiles. Many people have also told me that he seems to know when I leave and re-enter the room. I don’t know how, but I will take their word for it. The thought makes me smile. And I can tell you that he can definitely think… he anticipates things. For instance, he has always liked wind so for months know, I have blown in his face and usually will get a smile back. Now it has got to the point that when I take a deep breath, Nathan will close his eyes and then flutter his eyelashes with anticipation. And, if I don’t blow on him and instead laugh, he will laugh… it is our special game. Although Nathan is not talking yet, he is babbling. And I can tell you that he definitely understands words. I proved it tonight… I was feeding him dinner and he was starting to ignore me and making motions like he wanted to be in his bouncer (bouncing his legs up and down), and I asked him, “Nathan, do you want more?”, and he stopped bouncing, stayed still and opened his mouth like a little birdie… and he does that all the time. He also will put his head up when I ask him to if he gets lazy and lets it fall down. And I think he knows what “cute” means. If I ever want him to smile, I just have to say how much “cuter” he got today and I am sure to get one. Nathan is also not walking yet, but he is starting to support his weight and getting really good at standing in his stander so I’m not crossing that off the list either. In fact, I’m not crossing anything off the list just yet…. But, I have to remain realistic…. People often ask me how I do it… how I get through all that I have been through and have to go through. And my response is always, “what choice do I have?” and I guess I would have to add that I also go through many nights like this… lots of thinking and pondering and trying to figure it all out. Some days I have lots of crying and some days I have lots of smiles, like last week (before the seizures) when he did lots of new things. I love new things! And I also get lots of support from my family. I don’t know what I would do without the constant hugs from my husband, the pep talks and countless babysitting days from my parents… not to mention the days my dad has filled in and taken Nathan to therapy for me, the words of encouragement from my brother and his wife, the inquiries from our grandparents, the weeks that Mark’s sister has spent with us and been my sidekick, the days Mark’s mom has helped us and the hours she has spent pacing the floor with Nathan fussing in her arms, the countless songs that both his grandmothers have sang to him, each with their own style… And I think this website has helped me tremendously. Just knowing that I could go here tonight and write to all of you that have been here to support my family. Thanks for reading this very long list of thoughts that were in my head tonight. |