Showing posts with label Turner Syndrome. Show all posts
Showing posts with label Turner Syndrome. Show all posts

Dear Mother-to-Be,


Dear Mother-to-be,

Four times I have been pregnant. Four times I carried a child nine months inside my body. And four times I had a c-section. I did not plan the pregnancies, nor could I control the outcome, but I was eager to become a mom. During each pregnancy I looked forward to the routine sonograms to watch the beating heart, tiny arms and legs kicking and punching, and even the occasional thumb-sucking. During the waiting and anticipation I really didn't like surprises, as any woman understands. Maybe your pregnancy was a surprise, or maybe there was a surprise in the sonogram.

You may have just discovered that there is something wrong with your pre-born baby through a sonogram or blood test. Whenever you receive such news it isn't easy to understand and the shock will resonate for a long time. It is difficult to accept....how could this be possible? What went wrong? Whose fault is this? That "something wrong" really means that there is something your child has that will make them very different from other children. Five months into one of my pregnancies I learned that something was very different. My genetic counselor offered abortion as a perfectly normal choice. Abortion had never crossed my mind, but now I understood the choice that women must make. One must consciously and unselfishly choose to keep the baby, and even pray that the baby survives the pregnancy. No one wants to be called selfish, after all, we all have rights....? It is no easy decision to sacrifice our plans, our money, our lifestyle, our career, our time, or our comfort to accept something different into our lives. You will forever be walking down a different path, and what is normal for others will not be for you.

Please understand the doctors and genetic counselors are simply doing their job, but they cannot possibly, accurately predict the outcome of any single pregnancy nor the degree of challenges your child will face. Sonograms and lab tests should not be relied on for making a decision regarding the life of your child. It is your child.

I am glad I did not have an abortion. I cannot imagine life without my beautiful daughter. Regardless of how many doctor visits, medical tests, treatments, difficulties, and emotional trauma that we have been through, she has made this world a better place. She is a normal girl with an extraordinary intelligence, endless affection, and passionate personality. Really....abortion a normal choice???? Consider what you might be missing if you choose to end the baby's life.

Sincerely,
A Mom full of joy and peace

Wonderfully Made!


We first learned about Turner Syndrome in 2004, when our daughter was officially diagnosed right after her birth. Prenatally, we knew there was a problem but we waited until after her birth to have genetic testing done. We had just come home from the hospital after her birth, when a nurse called our home to tell us the genetic test results. That was one of the strangest phone calls I have ever received. The conversation was all so matter of fact, as if she was telling me when our next doctor's appointment was. What could I say but, "OK, thanks for the information!" But when I hung up the phone, I burst into tears. After wondering for four months, I finally knew exactly what was wrong with our baby girl, and it was the moment of acceptance.

In the last few months, the questions have been coming from our daughter, and she is coming to that place of acceptance too. Advice can be so freely and callously given from a variety of sources, and parents must decide what advice is worth taking. During the pregnancy, the genetic counselor told us that she was an accident, meaning there was no one to blame for this "mistake." Therefore, it was acceptable that we could have an abortion because it was "a mistake." That was one piece of advice I have never accepted. To accept that her life was a mistake, because she wasn't "perfect," is to not believe that God is in control. Is God good or isn't He? Is He good all the time? Does He really care about us? Do I believe that God will help me through difficult times in this imperfect world? Yes, yes, yes, and yes. The best advice came from a nurse. She told us to have our answer ready before the questions come. Many people will ask questions, and if we prepare our answers now, we will be ready to face the questions. I took this to heart, because I knew that my own daughter would have the most questions, and I wanted to be ready.

There were several difficult topics that we knew we would have to tell our daughter about as she grew older. I wondered how and when I would have to explain these things to her. I contemplated this when she was only 6 months old, and I was already overly concerned about it. I felt that I needed some wisdom on this matter. What will I tell her? How will I answer her own questions? How do I explain why she must have a daily injection? How do I explain that she will probably never be able to give birth? How do I explain why she must have strange tests at the cardiologist's? Amazingly, the Lord answered me immediately with this, "For You formed my inward parts, You knit me together in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Wonderful are Your works, and my soul knows it very well....." Psalm 139:13-14

This answer was the all purpose answer to every question - the very foundation that would guide every discussion. You are wonderfully made.....purposefully made......miraculously formed......God's creation is beautiful, and I can be thankful for who I am. And now, six years later, as the questions begin to unfold, I stand ready with God's wisdom which marvelously puts our lives into the right perspective. While mystery is woven into understanding God's sovereign plan, the truth is that this world is a sinful, broken, place where suffering invades every person's life in some form, and the truth is that God is still in control and will one day bring an end to all suffering. In the mean time, we live by faith, trusting that God did fearfully and wonderfully make us, and we will praise Him rather than despise what we are.