I've known for some time now. When I said these words to myself, I cried. I did not cry out of sorrow for my daughter having this syndrome, or because I was now a mother to a daughter with this syndrome.... I think I cried because all the denial, and all the heartache came together and said your most amazing daughter is really not ok. She needs help. Your eyes are now open, and it is time to begin helping her. Her life is in your hands, and only you can guide her, love her, and help her grow with this, so she can someday function. Your daughter does have severe anxiety. Your daughter will not get out of her bubble of dragons to play with other children. Your daughter does show signs of depression. You daughter is growing up, but cries everyday, often multiple time per day. Your daughter cannot ride a bike, use a knife, or even hold a fork properly, or even run with a "normal" gait. She is quirky, extremely intelligent, but introverted. She is clumsy and still spills everything. She prefers the dark, and cannot stand loud noises (sometimes). She will eat her hair, pick her nails, shake her hands, or bite her fingers constantly to deal with life. ...And she is outstanding.
Kelsey is 10 now, and struggles everyday, as I struggle everyday to give her a great life. She wears me down, but fills me up with so much joy, love, laughter, intelligence, and goodness. She is growing up, and these things are changing. The days of constant fear seem to have gone. She does not ask if the stove is off a million times before bed, as she did for years straight. She does not fear tornados and any strong wind that may bring tornados, even though tornados are not too common in Denver. Ah, we can leave the house, and she is ok! She is starting to talk about other things, but still draws dragons and writes pages and pages of dragon tales almost daily. Her obsessions are growing into more compassionate ones, but this leads to great heartache, heartache that a 10 year old should not have to endure.
My love cannot be far from me. If she is, she is closed. She may appear out of it, in another world, depressed, but she is just dealing with being away from the nest. She still pleads with me to let her sleep with me. She holds on tight, and I never want to let her go, but I fear her never being able to function on her own. I don't know our balance, I only want to hold my baby and tell her I will protect her always. But, even when I say this, holding her near, something happens, and she is set off, and I don't know what it is. Her sadness gets strong. She cries. She cries a lot. Sometimes, it seems, for days. And then life is good again.
I took Kelsey out of school last November. It was too much. Bringing her home to school has been a great decision. I know this doesn't help her social skills, but it helps her life. Life is simpler. There is much less stress, more time to breathe. Kelsey does well with this. She spends the days with me and the babe, obviously schooling, but also at the dog park, taking walks, out back with baby, reading and being. We don't do too much, as it is just too much. She has grown into an extraordinary big sister to baby sister, but nothing much has changed between her and Madison. Ha, of course, they are 20 months apart after all! She has grown so much by helping me daily. I am surprised and proud at her transformation at home, but always aware we have so far to go.
Kelsey Lin, my heart, I love you completely.