On June 23, 2006, I gave birth to my second child, a daughter, who was born at 2 lbs. 8 oz., 8 weeks early and extremely weak. She looked different, wasn’t growing and even the best doctors didn’t know if she would survive, not to mention that she was so tiny you could fit my husband’s wedding ring around her thigh. After my delivery, amidst all the visible worry on other’s faces, I somehow felt that things would be okay. I felt a strange peace, which for someone with self-diagnosed minor OCD, is not something I have felt often. For a long time I would wonder if it was the pain medication after my c-section, or in fact God and my faith in Him that kept me feeling like everything was going to work out fine. To this day, I am assured that it was not the pain medication, but rather, my faith.
My daughter left the hospital at only 3 ½ lbs, after two months spent in the NICU. She was severely hypotonic (low muscle tone) and was not strong enough to do anything but sleep. Feeding was a problem, bonding was a problem, and most of all, growing was a problem. Thus began the search for why she was the way she was. Doctor after doctor was stumped as to the exact cause of all of our daughter’s problems. Why was she so weak? Why couldn’t she grow? Why didn’t she cry? Or smile? Or even respond to our actions? Why wasn’t she “regular” like our son, or so many other children we would see daily? Would we ever know what it was that caused our daughter to have such a difficult road ahead? The pain of not knowing was often the most heart-wrenching part of this journey that we had begun when she was born. It just seemed so unfair. But through it all, people would always ask if I was okay, and I would always respond “I am good”, because I actually felt okay, despite the frustrations. That was God. I often had little reason to feel good, but I relied on Him, and he made it possible.
At seven months and approximately 6 ½ lbs. she was admitted into the hospital (the first of many, many hospital stays) for breathing issues and evaluations of her heart. During that hospital stay the search for the cause began. It was no longer acceptable to believe that she was just “born too early, and to give her time”. It somehow fell upon me to start researching her case. That began a long 18 months of doctors visits, hospital stays, traveling out of town to see specialists, genetic testing, therapy, frustrations, emotional breakdowns and more, until we finally found her diagnosis. After two skin biopsies (and other various tests), our daughter was finally diagnosed with a very rare chromosomal disorder known as “Mosaic Triploidy”, or Diploid/Triploid Mosaicism (I will not go into details because it would take up the entire newspaper!). From what I am aware of, she is one of approximately 12 people in the country, and approximately 40 in the world that has this syndrome. Almost all triploidy babies do not survive, yet my daughter did.
That led to more “Whys”. Why me? Why were we chosen as her parents? Why did she survive and the others so often do not? Why was she able to shed some of the bad triploid cells (69xxx) and grow “good” diploid cells (46xx), thus allowing her to survive a miscarriage? Those questions I will never know the answer to. All I can trust is that God has placed her here with us for a reason. To teach my family something. To teach me something. To show others what is possible. To inspire those who know her. God has also showed me what I am capable of. He has helped me learn to be much more grateful than I may have been before. He has helped me see that things can always be much more difficult than they are in the moment. He has reminded me of the important things in life. He has shown me how lucky and blessed I truly am.
God has kept me believing, hoping, and comforted beyond my wildest expectations. While everyday life with a five years old son and a three year-old girl with special needs is crazy, busy, stressful and filled the worries about the future for both my daughter and my family as a whole, I feel His hand on my shoulder, and at the end of the day, I am strong.
Jul
24
In Good Faith, August 2009
Sarah Alamond 07/24/09
CATEGORY: Religion and Spirituality