Dylan has an appointment coming up at the end of the month for an Echo cardiogram. I'm sure those who have heart kids understand how even though things appear great from our end, there's always the worry that lingers in the background that this time will be the time they say that it looks like it's time for the next surgery, or that things aren't looking as good as they have in the past. It's not a constant conscious worry, but as the time gets closer it creeps more and more to the forefront and in the quiet moments I find myself thinking about the appointment and wondering how it will go. Mostly I think of how Dylan's cardiologist said at one appointment that he hopes to get him to 3 before he needs his next surgery and how he will be 3 this summer. Then I will think of his last echo and how Dylan had the MRI after it because his pulmonary arteries looked like they were getting pretty narrow and his cardiologist said he wouldn't worry about it if he thought he would need the surgery any time soon and would just fix it with the surgery if he did.
As I think about these things, I think of my ignorance of this whole heart world before Dylan was born. I was aware that such a world existed. I have family and friends who are part of the heart world. I saw their worry and heartbreak and hope but it wasn't until I found myself living it that I realized that I really only saw a small part of it.
I read on a blog (I wish I could remember whose at this point so I could give the proper credit) recently where the author wrote that her husband said that we live with fear and not in fear with our heart kids. I totally get that. I find that when my heart healthy kids are sick that I don't worry about them quite the same as I worry about Dylan when he gets sick. I'm sure it's easy for others to "forget" that Dylan even has a problem with his heart because he is doing so well and seems so normal. I think of it every time I help Dylan get dressed for the day and for bed and every time he gets in the bath. I think of it every time he's sad or hurt and won't let anyone besides me help him and think of how eventually he will need to have more surgery and how hard it is going to be on him (and on me) when he will be in the hospital recovering and in pain.
I think of these things and then I think of how this heart world has really opened my eyes and my heart. I think of all the women who were at the luncheon and how strong they all are. I think of Intermountain Healing Hearts and what a great service the group provides in bringing together people who are going through the same life journey. I know I've said it before, but as much as I wish Dylan didn't have a CHD, I am grateful for the blessings that have come into my life because of it. A whole world of hope and strength and compassion mixed in with the worry and heartache. I hope that I have become a better person because of it.