Wednesday, July 10, 2013

Sometimes you just need a little support

Brian and I have had some discussions about Tyler's health and the unknown future he has ahead of him. We both have concerns over what future surgeries he may need, what long term issues he may have from his open heart surgery, and the many unknowns of what could go wrong unexpectedly due to his heart defect, even though it was fixed.

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. 

Gummy smiles! 


  1. Sounds great!! I'm so happy for you guys that you found this group of people to share with and learn from. I'm sure it will be great support for you both. Tyler looks so perfect it's hard to believe all of this!! xo

  2. I am a mom of a CHD baby girl. She is now almost a year and had her surgery at 3 months old. I can relate to your post. Tyler is so handsome. Check out these two groups.. Mended Little Hearts, They have a parent matching that has helped me. The Children's Heart Foundation... They fund research for Congenital heart Defects and have many cool events. I wish you all the best. Cindy DuJany

  3. Posting as a result of a friend-of-a-friend-of-a-friend referral! I feel like I could have totally written your post about how you found out about Tyler's heart defect, except change TAPVR to AVSD and Tyler's age from a few days old to 20 months. During a routine 18 month checkup, our pedi noticed a slight murmur, but we were told it was probably nothing since our son was super healthy and off the growth charts. He does have microtia and atresia (lack of an outer ear and ear canal) of the right ear, but those don't usually cause heart problems. We head off to pedi cardiology a few weeks later and, after a lengthy echo, the cardio nurse comes in and says the magic words you know so well: Your son needs open heart surgery. My first instinct was to laugh because it seemed so ridiculous.

    I understand the mourning for the child you thought you were going to have. I understand wishing and wanting to take this off his sholders and to protect him. I understand the fear, the sadness, the unknowns. The best part of all of these issues is that I've learned, as you are learning, that you're NEVER alone. No matter how rare, no matter how scary, there is support out there. God sent that little boy to you because you are the perfect mother for HIM. God knew what his challenges were going to be and He spent all your life preparing you to be this baby's momma. It won't always be easy, but you CAN do it. One day, one breath, one heartbeat at a time.

    1. Hi Heather- thanks! Wow that's amazing! It just makes you realize you can NEVER ignore something that you think might be nothing - because it may end up being something big (as we boh know!) ... Every day is still very emotional ... Some days he seems normal and I kind of forget about things. And other days, I think about just how fragile he really is and it makes me want to hold him and never let him go!

  4. Tyler is such a handsome baby boy. You have two beautiful kiddos. I'm glad you found a place to connect with others going through the same thing. You're right that it's difficult for people who haven't gone through this to truly understand. We try. But the truth is that even with all the heartfelt empathy, it's not the same as someone who has lived through it. I'm glad you are sharing some of the emotions you are experiencing. I know it's a very private and personal matter and probably not easy to share, but you bring up things I never realized. For example, mourning the loss of the healthy child. It makes sense and hopefully it will help others' understand better if they know and have to support anyone in a similar situation. Your family is still in our prayers.

  5. Your son is beautiful :) find me on Facebook their is a link on my blog we will talk soon :) I'm exhausted can't wait to go home lol

  6. Tyler is such a gorgeous baby!! Every time I read one of your posts lately I can't help thinking about how strong you are! I love the comment above where someone said God's been preparing you your whole life to take care of Tyler. I'm so glad your hospital has this group--I know that as much as I'd like to be helpful, I don't *really* know what it's like, and I'd guess a lot of local parents feel the same way.

    Have a great rest-of-the-weekend!


    1. Hey Carla- thanks so much! Every time someone here in blog land gives me support, that helps too! Every little thing counts! :) And it is true- this little boy is here for a reason - he is here to be loved by us and we are here to do it all! :)

  7. He seriously is so cute and handsome! Love those gummy smiles :o) I'm so glad to hear you've joined a support group. I've attended some myself for my own issues and they were a tremendous help. It makes you feel understood because people are going through the exact same thing. A breath of fresh air is a great way to describe it. To mourn the loss of your healthy child was a chilling statement to read, I can't imagine the pain in trying to accept that. I really do believe that God only gives us what he knows we can handle and I am putting my faith in the strength and bond of your family that you WILL get through this :o) I know I can't relate, but if you ever need to vent I am very good at empathizing. I can at the very least lend an ear :o)

  8. He is so handsome! I'm sorry to hear what you are going through, I honestly cannot imagine. I watched two close friends deal with this and it's incredibly hard from the sidelines, can't imagine how you feel. So glad that you're going to a support group!


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