The title of this post refers to how I describe life with little Miss Marisa. In so many ways she is just like most other kids out there, silly, affectionate, curious, demanding, and above all deserving of love, honor, and respect just like every other human being. Where she starts to diverge from the "norm" is in that everything we do requires a little or a lot of thought before hand and often times a great deal of planning.
When Marisa came home from 56 days in the NICU, she came with a G-Tube and 8 medications. The meds covered the gamut from Synthroid for hypothroidism, which she still takes daily, to Septra to prevent a kidney infection, Zantac and Reglan for reflux & other GI issues, Prednisone for adrenal insufficiency, and 3 others I can't recall the names of or needs for right now. I'm counting that as a good thing! Over time the list of medication names, dosages and times to administer, stuck with a magnet on our fridge, got smaller and smaller until we finally whittled it down to just the Synthroid. Our visits to the various specialists in the medical community and back and forth way too often to the pediatrician's office have whittled down too. I am thankful that, at least for now and hopefully for years to come, we spend more much time away from the hospital and waiting in clinics all over town than we spent in them years ago. But, I am also mindful that that is not the story for many kids and their families, and pray often for them.
At 7 years old, Marisa is out past many of the initial medical concerns that plagued us in the early days. Her G-Tube is long gone, we don't have a neurologist's business card anymore, and the cardiologist who last saw her when she was 2 years old, is just someone from our past now. I pray every day that she does not develop Leukemia because I know that would return us to the world of many of the specialists we saw before. They are all truly wonderful people, all of whom treated us and above all our precious child with kindness and grace; but we will be just fine if we never see them again. Last year we were told Marisa could be considered a "graduate" of the Hematology/Oncology clinic at the hospital from her NICU days, but then we had a bit of a scare this spring with blood counts and she was put back on their rolls. So back she and I will go next March near her birthday for an annual check-up once again.
Although I am so thankful and grateful that most of her medical concerns have become distant memories, it would be nice to move on as well from several behavioral challenges. I am hoping that as time goes by we can look back on these days, that all in all are pretty darn good, and be happy with how far she has come. I am hoping to move beyond having to inform every new person in charge in every new situation about her quirks and her M.O. I am hoping to be able to go out with her all over town and not need to either bring "back up" or make sure I have on running shoes so I can chase her down when her need to run kicks in and she is off down the street without warning. I long for the day when I do not have to admonish her over and over and over again all day to do or not to do something. I do believe that day will come, but can't see that proverbial light just yet..... I do have faith that we will get there, though, and one day I will see this as time well spent, teaching her how to live and to be in community with the rest of the world, just as she and all other people with disabilities deserve.
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