The path a parent of a child with a health issue can be a lonely one. Our friends and family offer love and support as they can (in most cases), but most often they don't know what it's like to go through it. Even though I am a twin, I don't feel qualified to give mothers of twins advice. I don't know what it's like to be a parent to twins.
At the first Heart Mom Luncheon held by Intermountain Healing Hearts, Margaret Cardall, mother of composer and pianist Paul Cardall, spoke of her journey of being a heart mom. She stated that she didn't know any other families dealing with congenital heart defects. In my recollection, she said at times she felt very much alone. The internet or groups like Intermountain Healing Hearts weren't around then, so she had no way of connecting with other heart moms.
Honestly, I haven't felt that loneliness. Not really even the day we found out that our unborn son would be born with a serious heart defect. My sister has a daughter with a hole in her heart that never has required surgery. I also have a close friend who has traveled the same path of a serious heart defect. One of the first things she did when she heard the news was to contact a lady who had been on the board of a support group for congenital heart defects. That lady informed her that the group they had been a part of really wasn't used any more, but let her know about Intermountain Healing Hearts. My friend then emailed me the information, and I didn't wait to contact the group to join.
The day we learned that Dylan would have a CHD was a hard one for me. I've probably mentioned on this blog before a bit about that day, so I am likely repeating things. Every time I would feel his movements, my stomach would sink and I would think "heart defect." We didn't know which type of heart defect he had at that point. I asked Russ to give me a Priesthood Blessing that night, and he did. It was a beautiful blessing where we both strongly felt comfort and peace from Heavenly Father. Neither one of us could hold back tears. The stress and almost panicky feelings left me completely. Later I would find myself wondering if I were in denial about his heart defect since I wasn't stressing about it.
I did have worries though. I wondered what would happen after he was born. We had been given a tour of the PICU at the children's hospital, and were told that likely we wouldn't even see him after he was born, that he would be taken directly to the NICU of the delivering hospital before transferred there. The nurse who gave us the tour also mentioned Intermountain Healing Hearts. She was glad when I told her we knew about the group and had joined.
I posted a few questions and was given knowledgeable answers. My favorite answer in regards to questions about older siblings was that we always say that these heart kids are special, and they are, but their siblings are just as special and go through the heart journey too.
After Dylan was born, we met other families whose children had recently had open heart surgery and who were also members of Intermountain Healing Hearts. We didn't have to find them, they had kept up with the group and found us. Others also visited us during his 18 days there. They knew what we were going through, they had done it themselves.
Even now, when we are in a more calm and settled section of this path (and hopefully it will be a while still before Dylan will need his next surgery), it's still nice to be part of the group. There's something comforting and amazing about being in a room full of other families going through the same struggles like I was earlier this month at the annual family camp. Even though we are all on the path of a heart family, our journeys are just a little bit different. Despite that, they know what it's like to have your child's cardiologist tell you that if your child were to get the flu, it could be very bad for him. And the worry when the flu does hit your house a short time later. (And for clarification, I'm talking about influenza, not typical stomach virus.)
I'm nearing the end of a two year term as vice-president on the governing board for Intermountain Healing Hearts. IHH has been such a blessing to me, that when it was announced that nominations and elections would be held for the governing board, I decided to go ahead and offer my nomination, despite having six children to take care of, one being a newborn baby. I wanted to be able to help how I could for this group that did so much for me. I hope I have.
Nominations are soon going to open for the next two year term on the governing board. They will open up the day of the Heart Walk, the biggest fundraiser for IHH. I think I will miss being on the governing board (yes, I realize I could run for governing board again, but think I will wait. Maybe in another two years). It was a big step outside of my comfort zone to do it, but I really have enjoyed my time serving. I sincerely hope that there are lots of people considering being a part of the governing board.
Going back to the title of my post as to why I need Intermountain Healing Hearts, even though I'm not currently struggling, I know the time will come when Dylan will need more surgery. I know that as with his first surgery, many of these families, who may be going through their own struggles, will think and pray for him. He will grow up attending events and getting to know other kids his own age who face the same issues he does. He will never have to feel alone in his journey. And that is what it's all about.
Friday, August 3, 2012
On his birthday, we went out to lunch with my mom, my aunt, my sister and her daughters. Dylan requested Training Table, so that's where we ate. He seemed to have a good birthday.
Today he had his 4 year well check, which he wasn't thrilled about. Especially the part where he got four shots. He was happy and gave big smiles at the start of the doctor visit, but got more and more unhappy with being there so got quieter and quieter and wouldn't smile again. He is now at about the 60% for both height and weight. I think he actually weighs the same he did a year ago, but no one said anything about it at the doctor's office. I'm going to have to find what I did with the growth chart I have for him and look it up. Not that it will make a difference, though. He's basically average for his age.