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re: re: re: Dealing as a parent.... Mar. 12th, 2008 9:12am
I sit here and read your posts and remember the fear I used to live in daily. I have a ten year old turning 11 this July. I can remember having what I felt the life sucked out of me when they told me my daughter had a disease. I heard ringing in my ears and the doctors muffled explaination. The first year was a blur. Of course with any new baby it is pretty much a blur but add a disease and POW! Right in the kisser. I can remember bathing my daughter as an infant and just breaking down because she was so innocent and had no idea she had this disease. So naive. It just brought me to tears as if one day I had to telll her, "Guess what you have this awful disease I know nothing about." (which you never have to do because it becomes a part of them like the night and day comes) Soon the days flew by and I learned more and more about CAH. I read many scary stories on here. I have been coming here since she was 2 or three. I can't remember. I would log off and cry my eyes out. BUT those were the stories I learned from and drove me to be better prepared. Some stories picked me up, brushed me off and showed me that I can do this, and so can my daughter. The adults helped so much just by adding a post of, "Hey I am here, I am ok." When my daughter was in NICU the week after her birth, they brought a 10 year old girl up to introduce us to. To see her standing there, smiling, happy and healthy made the world of a difference. Because all I thought was, she had a life ahead of her full sickness and or even possible death. I couldn't get past the fact my child relied on medicine for life. But then it took me realizing my child relied on food, and water to live and I had provided that just fine for her. So what is the big deal about adding medicine to her day? It took many years of healing to grasp my child had CAH. I think you go through denial for a while. Then when you realize this is it, you deal with it. My greatest gift to my daughter was to educate myself in the world of CAH. I learned everything I could (and still learning) so I could care for her in the best way possible. I keep my medicine cabinet stocked at all times. Including enough Cortef. I always keep a stock of Children's Motrin, and Tylenol. Never with out it. This always gave me that "safe" feeling. Like I was always ready for battle. A good soldier never goes without extra amunition. So I was ready. I looked at myself as a soldier, protecting my daughter's life. I asked MILLIONS of questions of her endo. If he fluffed me off ever, or didn't have the time, I would have left him long ago. But he has been excellent. He has my daughter's life in his hands also. So we work close together. I bounced things off of other parents and adults with CAH on this blessed board. What I would read I would take back to my daughter's endo. and bounce off of him. And then it came down to my faith. God helps those who helps themselves. SO, my suggestion, find your faith. If you believe in Jesus, God, Buddah, whoever, find a good faith filled religion that you can lean on. Because in the end, that is what truly got me through those days I would melt down when I heard, "Mommy, I don't feel good." My heart would literally stop when I heard that. I would have to take time to melt down and get myself back together. It wasn't healthy and it wasn't doing her any good. In 2001 I went to my church's renewal weekend and WOW, what a different that made. It really brought me back to my faith. I had spent a few years not happy with God over this. It took this retreat to realize that it was HIM that got me through it all. Without my constant faith I would die. No lie, I am no good to my daughter if I melt down and freak out. None. She deserved a strong mother that would stand in the face of CAH and say, "NOT IN MY HOUSE!" and fight the good fight for her. If God has other plans and takes her, then I know I gave everything I had to fight for her and did the right thing. But by golly I am going to fight! With or without CAH, you have to be a strong mom. Is it easy when my daughter is so sick we have to take her to the E.R. ? HELL NO. Do I get scared? Yep. BUT I tell you what, when my heart skips a beat now I look at that as the switch that turns me into fighting mode. You do what you can and leave the rest up to God. You just have to. I say my prayers when she gets sick, and ask for God's assistance and then I go into battle mode. It is all you can do. I figure I have picked the best soldier for my team to go to battle with me for my daughter. And that is God. Lets ROLL!
