Saturday, April 7, 2012
The VERY Impatient Mom
Is me! I'm afraid I've finally reached my max and I'm taking it out on my poor daughter. I've found myself snapping at every little thing she does that isn't perfect and I'm about in tears tonight because it's like watching someone else do this through a fog, but it's me. I will admit it's a combination of tiredness at all the appointments, phone calls, research, working, life and lack of sleep as well as fear for my daughter's future. I learned that she is a very unusual case and, among children with her special need, she falls into a category of 3%-6% for what she's got. On the other hand, what she didn't have, which is good, puts her into another category, too, that I'm still trying to get answers on.
I'm starting a new routine tonight that includes time for SERIOUS prayer, like the kind I did when trying to get Jie Jie's file. Though I have friends and family supporting me, this is my child and I took this on and I am the only one who can do Jie Jie's care. I need to pray for super self-discipline to go to bed early enough to get at least 7 hours a sleep her night. I need to pray for patience. I need to pray for help in understanding when it's helpful to Jie Jie remember to place her feet properly and "open her toes" and when to let it go. I need to pray to know when to correct her pronounciation and her grammar and when to let it go. I need to lovingly wash her hands when she touches something in the public restrooms even when I repeat over and over and over again not to touch ANYTHING, rather than scold her and lecture her on the diseases she can get.
Month before last, I was evaluating where Jie Jie is at this one year junction and she is really ready and eager for some big kid activities. I was researching various things like piano lesson, Mandarin classes, art and/or dance classes and then we started the medical rounds and it's all come to a halt while I get used to Jie Jie's three-hourly treatments. Eventually, she will be able to do these for herself, but for now it's all up to me, so I can't leave her with anyone and our life revolves around a three hour, or less, clock. Then there are her feet and physical therapy. How much should I nag her about placing her feet properly? Each time I do, she started walking like a robot, self-consciously over-trying and making it worse. She's voiding eye contact and has developed a fake smile to cover her true feelings. I've tried talking to her about this, but she insists that she's fine. The best way to proceed, is to go back to attaching and bonding 101, and realize that this is just a normal glitch in the road, all my fault, and that I can make it better if I START NOW and MAINTAIN a good pattern, no matter what.
I am simply aching, to go for a fast walk for exercise, at night, with my music in my headphones, but I don't have a stroller that can hold Jie Jie and allow me to cruise. With the adoption pending, I can't justify hiring a babysitter after she's in bed just to go take a walk. Hopefully, once we're hooked up with the PT program, they'll give us a stroller or help me pick the best one to buy. At this point I don't care how much they cost, I just need to know which kind is best for our needs. As Jie Jie grows, it's important that she sit on the right parts of her body so that pressure doesn't cause damage.
I'm counting on Easter tomorrow, to renew me as I remember the sacrifice of Christ for all of us and how small my issues are compared to so many. I need to count my blessings and get over this hump fast! Perhaps after this Friday's marathon at the Spina Bifida clinic, when I can meet other parents and professionals, I'll have a better understanding of my role in this strange new world. Even if Jie Jie's issue isn't Spina Bifida, these are parents with children with special needs and there are bound to be some experienced parents there to give me some tips.