(taken from a post written in 1996)
As I write this, Shane will be 3 in 2 weeks. He now wears hearing aids and glasses. I heard him cry for the first time this past summer when we started to use a Pacimuer Valve, a small valve fit over his trach that allows him to make noises by teaching him to exhale through his mouth and nose. He started to crawl after his forth surgery and is "cruising" now. God willing, he will walk soon. The feeding tube in his nose was removed and replaced with a more permanent one placed directly in his stomach through his abdomen. He is starting to eat and drink by mouth and maybe someday, when he can eat as well as he needs to, the tube in his stomach will be removed. He can't talk yet, but he is very expressive with his facial expressions. His trach will be out this spring. He runs the house and gets into everything. He's a stubborn as a mule, but I suppose that's what has kept him here. It's impossible to discipline him and where most children learn not to climb or get into things after they fall once or twice, Shane is so used to pain, that when he falls or we pat him on the butt to keep away from things that could hurt him, he laughs hysterically.
Jeremy now has a new job with better benefits. I have started college and started a support group for the families of children like Shane. Jeremy and I are considering having another child. Shane is doing well and will be at least 4-years-old before we have another one, and the time seems right. Of course we are terrified at the thought of having another sick baby, but the doctors and research have told us that the chance of that is rare. Like the parents of all babies, sick or healthy, we long to do "normal" things; come home a few days after giving birth, breast feeding, and having baby-sitters instead of nurses. We will never again be oblivious to what might happen, but we need to, and want to, have a good birth experience. Besides, Shane is getting a little too spoiled and another baby would do us all good. No matter what happens, Shane will always be a little more special, that's a feeling all mothers of disabled children have. I love him more than life itself and I would trade places with him in a millisecond. He the sorrow and joy in my life, as all children are to their parents, only multiply that by 100 when you have a disabled child. Every step forward and every step back is more noticed and more dramatic. It's hard, but I wouldn't trade it for anything. He has made me a stronger person.
I still get into arguments with doctors and nurses, but I know how to choose my battles. I have alienated quite a few of medical professionals, but I know Shane and his medical history best because I deal with it everyday of our lives. The latest battle was with a nurse who wanted to put Shane in a hospital room with 2 preemies when he was admitted with a virus. After asking to be put in a private room and told "no", I had to go into my "mom from hell" mode to get us moved and within 5 minutes we had a private room. There was no way I was going to subject to those two tiny babies to Shane's virus when they already had their own health problems to fight. Unfortunately, many of us moms with sick kids have had to learn about the "mom from hell" mode. Jeremy has supported me all the way. We no longer go to the hospital where Shane spent his first 10 months.
Because of Shane, and our experiences of having a child with this birth defect, I started a support group. It is the only support group of it's kind in the world. This defect strikes 1 in every 2500 babies. The cause is not yet known. It is not a prejudiced birth defect. It affects babies of healthy families, of parents of any age, of any color, of any religion, and any financial status; no matter how good the prenatal care. Most are found during routine ultrasounds. It can strike alone or with other birth or genetic defects. Fifty percent of babies born with this do not survive. Most survivors of this defect do not have any complications (other than feeding problems) or more than one repair.
I now know, after researching that the "flu" I had during my pregnancy, along with stomach pains, what I then thought was "more amniotic fluid that I had seen in birthing videos", and all the weight gain just in my stomach was undiagnosed polyhydramnios, excess amniotic fluid. Polyhydramnios is an indicator of fetal abnormalities. If my doctors had diagnosed me correctly maybe they would have diagnosed Shane's problems by ultrasound and we could have been prepared and had him at a trauma center better equipped to care for him.
I swore to myself that if I could help it, I would try to prepare other parents of children with this birth defect. These parents need to be better informed so they can make educated decisions for their child's health care. They need to know they are not alone. Most people have never heard of this birth defect, and if they are lucky, they never will. I started this support to help these parents the way Rhonda helped me. I wrote a newsletter in my kitchen, took it to a printer (who donated the service), and mailed it to a couple hundred parents and doctors. In 12 months, we now have families plus hospitals, universities, and research centers across the country and in Canada, Europe and Australia in our membership. The response has been overwhelming; this support group has been needed for forever.
Rhonda and Jenny have each had healthy baby girls since the deaths of their sons. We no longer keep in touch, it's a little uncomfortable for all of us; they have healthy babies but still grieve for their lost children and I still have Shane. They will always be in my heart, and I think they would agree, that our friendships were part of the worst times in our lives, but they are also a part of what helped all of us survive. I will never forget them. I hope the best for Rhonda and Jenny and their new babies, and I know one day I will have a healthy baby, too. I feel it in my heart as sure as I knew Shane was sick. But for right now, we'll be content will our own living, little angel.
(to be continued....)