Saturday was Lena's ballet recital. Our family had a special joy this year watching her dance, skip, twirl, and leap across the stage. I think all of us there this weekend had tears in our eyes, thankful for this special moment in her and our lives.
Five months ago Lena was lying in a hospital bed in NYC, in so much pain she was unable to move, on the second full week of fevers and a bizarre body-wide rash. She seemed at that point to be getting worse and worse, unable even to turn over in bed or walk to the bathroom, getting sicker and sicker with the fevers.
It took about a week into her hospitalization for us to determine that this illness was the onset of systemic juvenile idiopathic arthritis-- SJIA. Luckily we were at Columbia where the pediatric rheumatology department is excellent and they were able to diagnose her. She soon started a biologic immune-suppressant drug which we inject in her arm daily (still... and for at least the near future), which has literally given her back her life. I am so thankful to the doctors at Columbia, particularly to her rheumatologist Dr. Lisa Imundo, and to the Arthritis Foundation who funded and the scientists who created the medicine she is on. Five or ten years ago her prognosis would definitely not have been so good, and we probably would not have been watching her dance so gleeful at the recital this weekend.
When I became a parent, I was expecting to feel an immense amount of love-- and I have, at times being completely overwhelmed by the emotion and the wonder of these little people who are my children. But when Lena was sick I also discovered the flip side, the immense lows, the enormous amount of pain a parent can feel when your child is in pain, is so sick that you question if the future ahead of them is the one you had dreamed of until just that moment. Back in December we weren't sure if Lena would walk, if she'd go back to school. Thankfully she's doing so well you wouldn't even know that she has arthritis unless you looked VERY carefully. Thankfully she has the most indomitable spirit of anyone I know. She certainly bounced back from her 8-day hospital stay faster than either of her parents did. :)
I would question, why did this happen to my family? My daughter is the sweetest, most innocent, loving child-- how could she be the one ending up with a chronic debilitating disease? I still don't know the answer to these questions. But I have come to some sort of acceptance that not everything is under our control, or even under God's control. Things happen-- genes/ nature/ randomness, whatever you want to call it. God empowers us to have the strength to deal with life's situations the best we can, to love with our entire beings and to accept the truth that life is precious, short, and incredibly valuable. It is our task as parents and human beings to be thankful for the time and the love that we have and to try to leave the world a better place for our having been here.
I really appreciate you sharing your personal journey as well as your thoughts on how it connects to your beliefs. I think we need to have these kinds of conversations more. Your reflection inspires us to reflect more on the meaning of our lives and what we really believe about the world and our existence in it, in the face of joyous experiences as well as scary and challenging ones.
ReplyDeleteThank you for sharing this story. As often as I see you, I had know idea what was going on with Lena. I knew she was ill and assumed someone would tell me when the time was right. It is such a thrill to hear that you enjoyed a major milestone of a little dancer. Having been a mommy of two dancers and sitting through a lot of recitals, it is something that only a mom can appreciate more than anyone. Her smile says it all!
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