The weight of guilt

First, I have to thank you all for the overwhelming support. I was a little afraid to open my blog today, for fear that I would have a number of entries from people who did not support our decision. I'm not asking you to support it, I guess just understand it and forgive me for any misgivings you may have about our decisions. I do feel like I should clarify, our son suffered from Amniotic Band Syndrome (not Trisomy 13). But the devastating results of this condition to our son's face and head resulted in similar results to Trisomy 13. In fact, he looked similar to some Trisomy 13 babies. Amniotic Band Syndrome results from a tear in the amniotic sac, when that sac scars over the baby can get caught in the scar tissue. Some babies get hands or feet caught (a common cause of club foot), our baby's head and face were caught in the scar tissue. This resulted in severe brain abnormalities, anencephaly, and severe cleft palate. The fingers of our baby were also deformed. If you google it, they really only talk about or have pictures of the babies who make it - this dissapointed me, as I needed info in the beginning. I now have my own pictures and images of the effects in my memory. The tear in the amniotic sac can result from anything as simple as standing up from a chair or as harsh as a car accident. I have no recollection of what happened or when it happened, but it likely happened early in pregnancy around the time that the brain and face were developing. In retrospect, I'm surprised and thankfult that he hung on as long as he did. The docs say that he was functioning off the umbilical cord and when he got too big, that would not suffice anymore. As for the delivery, the docs and the hospital were great. We had as much time as we wanted with him, I just wish that he could have been a healthy baby and that we could have brought him home. I'm so thankful for the little time that we did have. I love that little boy with everything that I have in me, I'm so heartbroken.

I would also like to thank you for allowing me to talk freely about this now, I feel like a weight has been lifted off my chest. I apologize for not including such crucial details earlier. It's sort of a coping mechanism, like I said "my dirty little secret". DH and I talk about it daily, realizing that we made the right decision. It's hard not to get caught up in the should have, would have, could haves. We have to be careful. Honestly, I think that we made the right decision. With the information that we had, had I chosen to carry to full term I would have been a basket case. Awaiting the impending death and events that lay ahead would have been very difficult.

But to include such vivid, harsh details about the son that you love so deeply and made such a difficult choice for was something that I was not ready for. Not only that, but I have had many who don't agree and share their opinions with me. Or they act like it is not a loss and I can't stand that. We lost our son, we did not choose for him to develop such difficulties. We did choose his passing on our terms. I don't know, there are and were so many what ifs. We discussed the what ifs into the ground before making our decision. We decided that if the doctor told us that there was any glimmer of hope that our son could function in life that we would not induce. We just wanted our child to be able to have emotion, any language skills. We did not want to bear a son who stood only a chance at laying in a bed on feeding and breathing tubes as his life. We did not want our child to have to endure any pain at such a tender age. The doctor could see on ultrasound that Isaac's brain and face were severely affected. As I said before, they struggled to find any structures in the brain that were recognizable. This made up our minds.

Now we are left with the guilt of knowing that we chose the fate of our son. We are left mourning his abscence. I see what our child would be in the eyes and faces of most little kids - a ghost as Justin put it. It haunts me. I know that all of you didn't make the same decision that we did, the decision was made for you. I'm sorry for that. I guess the way that I look at it is that we just played our hand before our creator did it for us. I hope you understand where we come from too.

So, now I will continue on this journey of motherhood. We will continue to try to conceive a sibling for Isaac. We plan to share his memory and tell his story to them one day - part of me dreads this, part of me can't wait to share him with them. I know that he will live on in our hearts and hope that his spirit will be carried in some ways by his brothers or sisters.