We lost a child, the 6th (at the time) member of our family. Our children lost a sibling. We’ve struggled to mourn someone we never got the chance to know but whose loss we feel deeply. Already having children, we know what we’re missing out on but we don’t know who he would have been. The pregnancy wasn’t difficult, we seemed to go right from happiness & joy to this awful diagnosis of Spina Bifida. We never got to feel secure or like we were going to actually be bringing a baby home. We’ve lost a baby but also the security that you go through life with, just thinking that things will be okay. Life looks very much like it has always looked but their are so many intangible differences. The sad thing is that life goes on. The good thing is that life goes on.
My mission while I still am on this earth is to never forget him. Nor do I want the people around me to forget him, which is why every year on his birthday I go to the beach and release balloons with messages written on them. The kids come with me and I think they enjoy it. It keeps him alive in their hearts. I’ve learned that I can’t change what happened to me but I can change how I react to it and how I can help other’s who are going through the same thing. One suggestion that the Dr. gave me was to find a support group from what I had been through. I went onto google and facebook and searched. There were plenty of groups but none that had TMFR for Spina Bifida. I believe that had I found something, my emotions and feelings could have gone very different, I wouldn’t have felt so alone. There are people I know that have lost children but it’s hard to feel fully connected to those people. We only share a small connection, there’s so much more than just loss.
When I see a child with some sort of disability, my heart hurts for them and their parents. Then I wonder if they had the chance to terminate but didn’t. I want to know their story but of course I would never ask. I don’t want anyone to ever feel as if I have pity. I would never have pity, only compassion. Compassion and awe that they sacrifice their life for their child, they are trying to give that child the best and no-one should ever pity that. My mind goes to one of my friends who found out her son had a heart condition while in utero. She was given the option to terminate but decided against it and went on to have him, he was born with CHD and developed other diagnosis’. When he was born, it was really serious along with the following months up until today. Hospital stays, surgeries, numerous medical issues. I saw a lot of the pain she went through and still goes through. I’m sure I don’t know it all but it’s enough to think wow, that could be my life. And I think that every time I see a child in a wheel chair or walker. Life is so unpredictable. You think you know something and then BAM!, completely blindsided. I know that I’m not the only one nor will I be the last but I hope my words find the right person/people looking for guidance in my opinion as the worst thing to ever have happen to them or someone they know. My word of advice is to open up and speak out. Keeping it locked in will only hurt you more in the long run. I say more because this experience will change you, no matter how big or small, you are forever changed. But how you react to it will also save you.
This was an excruciatingly difficult decision to make, as I’m sure you all understand. You are forced to make this call with no good options, lots of unknowns, and many factors to consider. For us the main consideration was a desire to not want our unborn child or our living children to suffer, and we decided the most loving and compassionate option was for us parents to take on the pain and suffering so our children didn’t have to. We so badly wish our son’s diagnosis was better or the odds of him living a “normal” quality of life had been better.
One main thing that I took from the Dr. and continue to try and work on is not caring what anyone has to say or feel about the decision you decide to make. You have to decide what is best for you and your family. Don’t let what anyone has to say effect your life. She told me that once you can finally say “F you” to people for criticizing your decision, you now you’re okay. I haven’t reached that point yet but I’m pretty darn close!