By all accounts her pregnancy was normal. I was closely monitored because of gestational diabetes, took medicine for it and watched my diet. The ultrasound tech often commented on how long her legs and arms were and that we surely had a ballerina or piano player on our hands. At about 3 months of age, we had family from out of town come and visit. It was then that they noticed that she didn't seem to be coming out of the newborn stage and she was really floppy.
I had been caught up in the hustle and bustle of caring for two kids, working and surviving on a newborn’s schedule and didn't pick up on it, until that day. Six months later we found ourselves at Seattle Children's hospital to begin the process of testing. My girl is completely dependent on me. I feed, change her diapers, dress, bathe, comb her hair, interpret her facial expressions, grins and cries. She is the light of our lives. Clinic after clinic appointment and really we don't know much more than we did at three months of age. She is now seven.
I thank God that all along this journey we have had love, prayers, support, laughter and yes, tears to sustain us from our friends and family. It became necessary that I quit working outside the home as her health became unstable. I also became a single parent with no co-parent to help. I would not change one moment of the past seven years. My girl has taught me about what is really important in life. Even when she is in pain, even when she is frustrated that mom can't figure out what she needs; she will reach out and brush her hand along my hip, my arm, my face whichever is closest to her. This touch lets me know she is in there and knows what is going on. She is reassuring me that it’s going to be ok and we are a team. She is non-verbal but her facial expressions, smiles and grunts know a thousand languages.
I began exercising a few years ago and whenever possible I take her with me on my daily walks; one day it hit me. All of this is for her!
I take care of my body so that I am healthy enough to take care of hers. I walk for us, talk for us, and advocate for us. It is a privilege to do all that I do for her. She is an absolute angel and has so much love to give. Even when the daily demands are high (and they always are), I smile and snuggle my girl in for some kisses and tickles. Pure joy: that is what caregiving has taught me, pure joy.