Tuesday, December 28, 2010

Heart breaking

It is heart breaking sometimes to visit the online Down syndrome pregnancy board:

Hello,

Today we had our fetal echo. We found out the baby definitely has an AV canal defect. Cry

I knew this was a real possibility, but it made me so sad. At first I was just sad for my baby. I feel so bad that he has to go through this. That actually made me happy, because I was actually thinking about him first. But then later, after talking to the doctor, I had another relapse in my own feelings. All of this is still overwhelming to me. I am so tired of crying and being sad and I feel like it will never end. I feel like my whole life is going to have an underlying sadness and anticipation for more bad news. I know it's just awful to think that way. I haven't relapsed to the level of devastation I was at originally, and I have been able to keep aware of the bright sides, and keep it together for the rest of the day. BUT it's just so hard to deal with this sometimes.

It was good to read your inspirational post today, Missy, it was good to read how we shouldn't worry about the past or future, but live in today, where we usually aren't worried. Right now though, I am either worried or living in a dream world where I just don't think about reality and go on as if nothing is wrong. Like this isn't really happening.

Aside from the typical AVSD she (the doctor) also said that the pulmonary arteries seem small. Has anyone else ever been told that? She said that it could just be that the aorta looks big because of what's happening in the heart, or it could be that the magnification on the machine is misleading, but she said that could imply more surgery and more problems throughout his life.

So it got hard for me when she asked if we were still going forward, and we said yes. THEN she asked "even if the pulmonary artery is small" and I was so upset. I mean, I already said we were continuing. So why do you need to ask again. Then it makes me more scared of the pulmonary artery thing when she led me to believe it wasn't something we should spend time worrying about, ...yet she might think it would change our mind? I hope I am not crossing any lines here. I am not conflicted or seeking advice or an opinion of what I should do or what anyone else should do. I just don't know why the doctor has to make me feel so bad. I said it makes me feel bad when people ask me that because it makes me feel like my decision is being questioned, and she said "I have to ask". She was really nice, but she still had to say a few things that upset me. I asked if there was a good prognosis for him to have a normal life after the surgery and her response was "well there still is the downs syndrome". I wanted to say "REALLY, I didn't know, I MEANT IN TERMS OF HIS HEART!" Isn't it obvious that down syndrome will affect his life? That's not what I was referring to. Also, when she was asking about our decision she brought up our son and said "you do have another child to think about". How can someone be so nice and understanding in lots of other moments and then say things like that?

I am just sad because I was praying so hard that his heart would be ok. I knew it was a strong possibility that he would have the AVSD, but it still was hard to hear. At least now there is no more waiting and we can accept this and prepare. HonestIy, I am scared of what lies ahead. I don't know what I would do if I hadn't already read so many wonderful stories from the wonderful Moms on this board. I know it will be ok. I believe that even though God didn't take away my baby's heart defect, he is there in all of you...in all that you have shared to inspire and comfort, in all of your faces and voices, and it will all be ok.

-Alysia


Please pray for Alysia and her baby! They need us and God's grace and protection. I also pray that doctors realize they are dealing first with people's emotions regarding a child in their womb. It is a sick joke that a woman carrying a "defective child" is asked whether or not they want to continue with the pregnancy. I'm sure it's a legal issue. However, then I believe that every woman who walks into the doctor's office with a positive pregnancy result should be asked that. It is discrimination not to, is it not? I have a better idea yet, don't ask! I'm sure everyone knows abortion is an option. I am not here to say what is right for everyone, but I wish people like Alysia did not have to have such opinions/judgements cast on to her and her baby because the child will be like Sweet Baby Calvin. Guess what, he is a dream baby! Let us become leaders to others and show them that we don't have to quit when the going gets tough. We do not have to become paralyzed in the face of fear. We can persevere. We can chose, and not let other's negativity weigh us down!

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