Wednesday, September 19, 2012

Her Story: "I do have the strength to raise this child."

According to Michelle at Big Blueberry Eyes, in 2006 an anonymous poster shared the following story on a "termination for medical reasons" board:
I have lurked here for years, and although my story may not be welcomed with open arms, I feel compelled to share it none-the-less. Like many of you, I received a pre-natal diagnosis that our precious baby had Down syndrome and a heart defect. It was completely unexpected and devastating, obviously. Like many of you, my first concern was for my daughter. What would having a sibling with special needs mean for her future? I didn’t want to burden her with a brother who would never be anything but a drain on our family. We didn’t have the resources of money, time, family support, etc. to be good parents to my daughter and a child with Down syndrome. I didn’t want to bring a child into the world only to suffer. These feelings were substantiated by the medical professionals involved in my care. They universally agreed that terminating was the right decision. So we made the choice, and I had the procedure. My grief was overwhelming.
About one year after the termination, I was again pregnant. I thought that perhaps we could finally move past the pain of losing our baby. The pregnancy was smooth, an amnio proved that the baby was healthy and that there were no chromosomal abnormalities. Everything seemed great. But at 22 weeks I went into labor, and the drs. were only able to stop it for a few weeks. My precious son was born at 25 weeks due to incompetent cervix, and both my OB and the perinatologist agreed that it was a direct result of the termination procedure. There was no other explanation. After months in the NICU, too many complications to recount, various surgeries and painful procedures, my son finally came home. And I was reminded everyday of the fact that my baby’s health issues and delays, his numerous special needs, were a direct result of trying to prevent having a baby with special needs. The irony continues to astound me.
But what I have learned in the 5 years since he was born amazes me more. I have learned that I do have the strength to raise this child. That yes, the drs. appts. and therapies which at the beginning seemed all encompassing, fade into the past as he grows older. I have seen my daughter grow beautifully into a compassionate and loving person. The experience of having a brother with special needs has exposed her to something that I always said I would teach my children. That different isn’t bad…that what makes a person beautiful isn’t what you can see with your eyes. In the NICU, and since then at the children’s hospital, in specialists’ offices, at the early intervention center, in school…I have seen that children with Down syndrome, and other special needs are not burdens to their parents. These families have challenges, sure, but they also have joy. Their lives are more “normal” than not. I have seen the pride on parents faces (and felt it myself) when a goal that comes easily to others is finally mastered. I have heard stories and witnessed myself marriages and families strengthened and enriched. I have seen that kids with Down syndrome, one of whom is now my son’s best friend, are absolutely not suffering. My son’s friend runs and laughs and plays, tells jokes, and is reading. He loves freely and fully. He had the same heart defect as the baby I terminated…and after surgery he was out of the hospital in a week and has never had any other complications.
I am not sharing my thoughts to cause pain to any members of this board. But I have nowhere to go with the guilt and pain I feel for the decision I made. I do not just regret being put in the situation; I deeply, and painfully, regret the choice that I made. And I think that even though the majority of people who post here seem not to struggle with that feeling, I know that I can’t be alone. I wish that I would have actually talked to parents of children with Down syndrome. Because one thing I know for sure—as capable and helpful as my son’s drs. and therapists are, not one of them can really know what it is like to be his parent, and to see the love that he brings to our family. My son’s needs in fact are greater and more complicated than most of the children with Down syndrome that I have encountered, but his life still has value. I never would have imagined myself in this position…and I didn’t think that I, or my marriage, or my daughter, could come out stronger for it. But we have. And now after the time I have spent with these children and their families, I don’t at all consider them fanatics. But advocates for the kids who have brought so much love to their lives. And I can also say unequivocally that these children and adults with Down syndrome “have a life”. As far as what NICU nurses and neonatologists would advise, after practically living in the NICU for over 3 months, I have no doubt what they would, and do say…Down syndrome is nothing compared to what so many families experience. These children can and do have a great quality of life and contribute to their families and communities, and are not considered a burden even by their adult siblings after the parents are gone.
I am not posting this to cause pain to anyone on this board. But I also cannot just sit back and not express my views on this subject. I do not judge anyone here, including myself…I know that we all made the best possible choices with the information we had. But I have lived both sides of this issue. I have terminated for T21 and now am raising a child with special needs. I wish I had known then what I know now.


Catherine Sims said...

What an incredible journey you have been on. It seems both your sons have taught you many lessons. Painful though they may have been to learn they may be the cause of saving other little ones with down syndrome from the same fate as your son. Keep sharing your story tell anyone who will listen. You can make some good come from all this. Turn your pain and guilt into positive action. My son is my world and down syndrome are just words in our house. Certainly nothing to worry about because we are just too busy living. Thank you for sharing.

Marauder said...

I went to school, K-12, with a girl whose older brother had physical and mental disabilities, and she was one of the kindest people I've ever met in my life. I went to school with her for thirteen years and I don't think I ever saw her be mean to anybody one time. I hope that since this woman wrote this post, she found somewhere to go with her guilt and pain - hopefully to somewhere that helped her forgive herself and helped her move forward to make a positive difference in the world.

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