I have had this post on my heart for a while now, but wasn't sure how to word some things and was half afraid of the response. But if you know me in real life... then you know I generally just come out with whatever it is weighing on me. I am an extremely "real" person. Some people may not like that, but personally, I think it is a great quality lol!
When I got our diagnostic test results back, I knew I should seek support somewhere. The counselor in me knows that some things you need help with, and I should look for resources. So online I went, the world wide web has an answer for everything right? The first thing I googled was "support groups for Trisomy 18". The first group I found was on Baby Center, titled, "Carrying to term with poor/fatal diagnosis." Well that sounds like me... so let me join in here and see what this is like.
I read many posts, and looked at some pictures of people's little babies who had already passed away. At first, I could not bear to look at them. It was so painful and so insanely hard to imagine that this was what Gus would be like. Over time, I began looking at the pictures more and feeling more ok with post passing pictures. I began to understand that these were the only photos these women could have and that these babies were beautiful little beings. It took a long time to get there though.
I read about people who were struggling with just finding out a diagnosis, and some who had just given birth and lost their child. Others posted about missing their babies who had passed away months or years before. There was a large variety of fatal diagnoses and I often had to google them to understand what they were. I found a couple of girls who I was drawn to and ended up communicating with them more often than others. One of them was particularly special to me, and we decided we would text instead of using baby center only. I am really grateful for her, she has been an important part of my support system. I also found a few wonderful souls on Instagram and have been blessed to share in their journey as well.
Like most things online, there is always a bad egg in every crowd... and that bad egg or eggs ruin things that are for the most part a good thing. In this case, it all started with a post one of the girls I really liked had written. Her baby lived. Her baby was born with some issues, but the original diagnoses was wrong. Her daughter looked like she was going to make it and she was doing really well! Here comes the bad egg. Someone responded to her good news by saying something that I found to be nothing short of rude and inappropriate. This bad egg said that she should be very careful what she posts to this thread, as there are many people who would find her post difficult and hurtful to read because they didn't leave the hospital with their baby. The bad egg scolded this young mother for posting updates on her baby because it lived. I WAS FURIOUS. Here we have somebody who has been in this "support" group all these months, and now she can't post anymore because her baby didn't die? What the ****? It was then that I realized that this was not a safe place. I was let down, and disappointed. I said what I needed to about it, in a very professional way, and I left the group. At that time, I did not have a lot of hope for my Gus, but if he did beat the odds, I surely didn't want any part of a group that only cared to hear about your situation if it ended in death. I suppose the title of the group was misleading... because to the poor young mother living in NICU, that was still a poor diagnoses and she was surely very afraid and not out of the woods. Yet, she wasn't allowed to post anymore. What was she supposed to do? Go find a whole new group and start all over? UNBELIEVABLE.
I still had my friend that I could text, she actually left the group with me after that. I went on to try Facebook groups... knowing it would likely be the same kind of crap. And it was. I did get to see many kids living with Trisomy 18, and that part was good in some ways and bad in others. It is just overwhelming to see what some people are dealing with. And as always, if there is a troll in a group, they will find me. I added several Trisomy moms to my little Facebook page and sure enough, one of them could not wait to jump on a happy update I had posted about Gus. She basically said that I was ignorant if I believed that our scan was 100% a sure thing, and that Gus could have things really wrong with him and they still not see it. My initial response to this was, "What?" I wasn't really asking her what she had said, it was more like I was giving this lunatic a chance to correct herself before I went ape shit nuts on her. She then unleashed on me in a private message attack, that I ended by blocking her. You wonder how someone with a living Trisomy child can be that cold, hateful, and bitter. But there she was, and I again knew, I have to get out of here.
Support groups are great for some people. For people like me, they really don't help. They only add stress and severe anxiety to an already struggling mind. From all my research, and time spent reading other people's journeys... every single story is different. The range of issues for each case of Trisomy varies greatly. This chromosome abnormality has different effects on every kid. Yes there can be some kids who had the same struggles, but then there are others that it was not the same thing. The severity varies from case to case. In other words... one person's story is not going to look like the next. You cannot look at someone else and assume your life or your baby will be like that. There is no way to know. Some will die in utero, some will be stillborn, some will live moments, days or weeks... and some will make it years. Some will need very little assistance, some will need everything they can get to survive. I understand all the possibilities. Their story is not my story. God will write mine and in the mean time, I will not obsess over what may or may not be. It steals the joy from today... and we all need to focus on the joys of this moment.
Gus's level 2 anatomy scan came back clear. His heart is not defective, it is perfect. 90% of Trisomy 18 babies have a heart defect. Gus does not. His anatomy is developing perfectly. Those are the maternal fetal medicine doctors words, not mine. He is in normal weight range, though on the smaller end of normal. They believe I will make it to full term and that he will weight 5 to 5 1/2 pounds. The only soft marker he has is clinched hands. How can I not celebrate that news? How can I sit here and live in doom and gloom land when I get news that good. I refuse to let the trolls in this world steal that joy from me. I refuse to let the bitter and hate filled humans drag me into the depths of hell they choose to live in. I have lived there, and I don't want to stay. I moved out. I choose hope and I will be damned if I ever allow another person to rain on my parade. I am also working to not be the rain on somebody else's! Oh the things I am learning... who knew you could learn so much from someone who is so tiny. I love you Gus.
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