I know that my posts tend to be on the introspective side and dark because this is my outlet. However, I love my life and the people in it. I have been remiss since the day I posted my Every Heart Has a Story--Relationships. I posted the day after the Dancing Queen was hospitalized, the day after we almost lost her again. I had not seen her since I left to pick TRex from school and when I left, she was doing extraordinarily poorly. And even though I had been writing my Relationships post for a couple of weeks, I finished it on that dreary morning. As a result, it ended up with more of the negative, than the positive. When I read the posts from other heart moms, I realized I forgot to write about the fabulous changes that occurred as a result of DQ's congenital heart defects. I am rectifying that oversight today.
One of the most wonderful things that has happened to me as a result of CHD and pulmonary hypertension is that I don't take my relationships for granted. I try to let the people I love know that I love them. There is no guaranty of a tomorrow for any of us. I know that now. It allows me to appreciate the ones I love for who they are. My core relationships are stronger as a result.
CHD has also deepened my belief in the goodness of people in general. I am an optimist at heart. I try to see the good as much as possible. I think we should all look out for each other, take care of each other. Unfortunately, with the political discussions that have been taking place in this country over the last several years, I didn't feel like society at large really cares to help each other. Everybody was out for themselves. But, because of DQ's CHDs, I've learned that perfect strangers care. They don't want to see my baby suffer. They will come together to help a little girl they have never met simply because she is sick. They will help our family because they care so much.
DQ's carepage has had close to 1,000 unique visitors and many who regularly read it. I know that the posts are also emailed from several people and forwarded on from them as well (I get emails from people well outside my circle that are a forward of a forward of a forward of a post). Other people have added DQ to their webpages for children to pray for and she has been on countless prayer lists across the globe. While I do not believe in a higher power, my heart is filled with gratitude and warmth for the care and love shown to my girl. All of these acts make me realize people do care and have made me appreciate everyone around me more.
The most humbling act of caring toward my family happened last year. It reaffirmed my faith in humanity more than anything. When we finally found a doctor to give us a second opinion regarding DQ's pulmonary hypertension and we had to fly across the country, my family jumped into action (and wouldn't let me say no) and threw a benefit for DQ. They raised a lot of money that allowed us to travel without the added worry of cost and to stay home with DQ as she prepared for surgery. We were beyond grateful for that help. But more importantly, I felt we were part of a community who was working to give DQ a better life or at least a chance at more life. We had strangers from off of the street see the banner with DQ's picture, stop by and donate. We had people read the fliers and just want to meet the amazing girl who had been through so much. My entire family came together with their friends to work on this amazing event for my daughter. They laughed and they planned, they accepted my co-workers and DQ's therapists into their embrace. Everyone rallied around my girl. Everyone wore shirts with her name. Seeing so much love in one place for my family reaffirmed my belief that people are good at heart.
Without DQ's CHDs, I would never have started the carepage, I would not have needed the support of the community at large, and I am sure I would be much more cynical and angry with society. Instead, I have hope.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.