We have some fears to say the least & have felt very alone since it's hard to talk to others about this, as they may not understand. We felt like we needed to talk to other parents that were going through the same thing that we were. I talked to the social worker at the children's hospital that we bring Tyler to for his cardiologist appointments, and she suggested we attend the monthly support group at the hospital for parents of children with CHD (Congenital Heart Defect).
Tonight was the first night we went to the group meeting at the hospital. What a breathe of fresh air it was! As each person introduced themselves to us and told their stories, we realized each and every one of them had such a unique story about their child's Congenital Heart Defect, but yet it was so similar to ours in the sense that our lives have all changed forever. We finally met a group of parents who we could relate to and who were going through the same emotions we were feeling.
I am staying up late to write this so I don't lose my thoughts (which happens too easily lately with brain overload!).
Tonight, I heard something in our support group that really hit home with Brian and I.
When you have a child with a congenital heart defect, you need to eventually mourn the loss of your "healthy" child. It's something I never really thought about ever. EVER. Yes, Tyler has a congenital heart defect, and we've come to accept it (sort of) and everything else that we may run into in the future. But at some point, we need to actually "mourn" the loss of our healthy baby. It makes total sense. Every parent prays to God for their baby to be healthy of course. But it doesn't always work out that way. Life sometimes throws you for a loop and God has other plans for you.
Julianna was healthy (with the exception of her pneumothorax when she was born- but she was out of the NICU in 6 days and perfectly healthy since then). She has been a very healthy & "normal" child, so I never thought for a minute that it was possible to have an unhealthy baby since she was so perfect. Once Tyler was discharged from the hospital, and we were home, Brian and I both thought "Wow, we are home free - we have a healthy baby!".
As you know, he was home for 4 days, and then all hell broke loose. You can read about it HERE if you missed it.
This "Parents of CHD children" support group meets monthly - and there is no doubt we will be regular attendees. I felt so comfortable and "normal" with these people already. We all have a very special connection and sadly we can all relate to each other in a way that no friend or family member can.
Brian and I were the newcomers to this group, but I felt very welcome and at home with them. I can see us getting close with all of the parents as we hear more and more about their children's heart surgeries, issues and lives in general. Brian and I look forward to future meetings, they will no doubt be very helpful in helping us "mourn" the loss of our healthy child... and allow us to feel much better about his future.
My beautiful Tyler.