Bryson's Blog

Living with Trisomy 13

Sunday, April 29, 2007

Up all Night

It's yet another sleepless night at the Nault household for one weary mother. Bryson just can't stay asleep, and nothing, no matter how hard I try will send my little darling to sleep a whole night through. I know I am novice to the entire mothering shtick, but surely by now some sleep should be awarded me. It's so hard to gage at times what ought to be typical baby behavior and that what distinguishes trisomy babies from all others. I want to believe that this is normal and that it's not as tiring as it gets but that other mothers are dealing with the same dilemmas. I dont feel like there's much to bond over with other moms because I know they just feel sorry for me and thank god for their own lot in life. I guess that's why I have such a hard time imagining meeting moms with other trisomy kids because I don't want to be like them either. Not that I don't appreciate the struggles that they've endured, but I just don't see my self as the proud owner of an imperfect child. I am proud of my son, I think maybe by comparison he's better than other trisomy babies, but I don't want to know what it's like for those other little boys and girls because it's a disheartening experience to have to share. And I don't want to judge because I know that I have been judged, and I just don't feel like I know where to fit in. Not that anything would change with the way that we care for our son, but just to ease our minds that we can take comfort in things being truly well. You know we went from not having the solice of taking a single moment with Bryson for granted to dreaming the possiblities of his future all over again. Granted it's not the sort of future that seems to really lead anywhere.... but to at least a destination that may allow for Bryson's potential to progress and develop as much as it can. Sometimes the prospects of the future appear so vague and unrealistic, and then the reality of what is, is eerily exposed day by day playing out a scenario that defeats positive thinking. Folks, it's not even the nitty gritty just yet, so today may not have been the most stellar, I might just need to sleep, but tomorrow my little Bean might just start to crawl, say Dada and make the world seem right on track again. Travis and I put forth so much love and energy and devotion to give Bryson a happy little world to live in. The little rewards that most other parents receive in such quick succession that ables them to watch their bundle of joy turn into toddlers then kids and beyond... and we have to work tirelessly for a simple glimmer of that moment, well sometimes it doesnt come when we want them to. But we never give up and never will so long as Bean keeps receiving our love and encouragement.


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