Today we were going to have a party celebrating Isabelle’s homecoming. The weather had other plans and being cautious, we decided to postpone to next week. Another snowstorm was making its way to our region so better to be safe and reschedule. Of course it’s only raining in Plymouth, not a snowflake to be found. Kind of sums of how I feel about my existence today – gypped.
Yes, self pity. I have lots of it. Some days it feels like I am having entire conversations with myself trying to steer this ship of crazy thoughts. I walk a fine line of feeling sad about our situation and then grateful that we still have her with us. It’s almost like having a multiple personalities – one is angry and bitter while the other sees good in what has happened. My hope is that eventually the one that can see goodness prevails. I try to feed that wolf, so to speak and starve the other one. Unfortunately, my tendency is to always look at the worst possible scenario so guess which wolf ends up on top.
Today I am taking everything personally. Right now as I sit here on this couch, I feel like “What the f@ck??” We signed up to for the heart walk and set up a team page. I sent emails about the walk, mentioning how important research is for our daughter. My husband posted stuff on his page about the walk. Crickets. It’s like I am hearing crickets when I look at our page. Trust me, I know it’s early and believe me when I tell you I plan on beefing up marketing on this but it still makes me sad to know that our reality is just that- ours. People have lives. Some may not have checked their email or even saw our posts. Some may have thought about it for a second, and then had to do something else and forgot. I understand this in my head, but my heart feels like at the end of the day, we are alone with this. Other people can close the page out and be with their healthy children. I wish we could do the same. I wish I could close this window. I guess that is where this is coming from. I wish we didn’t have to walk, but we do.
There is a good chance she will need a transplant eventually. The research that is being funded now is trying to find a way to build vessels from stem cells, and helping the heart muscle regenerate. Through research, our surgeon has found a way to grow a left ventricle so that a transplant is not in the child’s future. Unfortunately, Isabelle’s heart is missing too many component so she doesn’t qualify. I sent him an email about it and he told me that he was sad that he hasn’t found a way to help HLHSers like Isabelle but he is determined to find a way. He can’t do that without funding from groups like the Children’s Heart Foundation.
Here’s the thing- I am feeling guilty for being disappointed. I’m angry that more funding goes to pediatric cancer and not enough goes to congenital heart disease. I’m frustrated when I see someone like Shaun White promote St. Jude for cancer research while he has a zipper just like Isabelle’s on his chest. I’m frustrated that there is a misconception that surgery cures the condition. It doesn’t. The treatment for hlhs right now gives Isabelle a 50% chance to make it to adulthood. That’s it. I should not feel bad about wanting her to have a better chance than that.
Funding for any disease is important. I get that. At the same time, I would love to see the same amount of awareness for heart disease as there is for cancer. During the week for Congenital Heart Disease Awareness, I saw more commercials about the Avon Walk for Breast Cancer than any thing else. There wasn’t even a commercial or PSA about congenital heart disease. Its all about Wearing Red. On Facebook, people are much more interested in their conspiracy theories about gun control than my posts about CHDs. Is gun control going to kill your child? No? Well….then I don’t know what to say.
The research that has been done so far has allowed my daughter to make it to six months. I am so grateful for that. Yesterday she rolled over for the first time. Honestly, I never even imagined that was going to happen. Her heart disease has given me an appreciation for every little smile, every giggle, every cuddle that I never thought possible. Here is where the positive wolf comes in. I see the blessing that we have received from this terrible disease is a deep appreciation for the the little things. We live each day to its fullest, and enjoy every minute we spend together as a family of five. I want there to be more milestones to achieve. I should not feel guilty about being passionate about making that happen. Any parent would do that for their child.