When I first began writing this post, Isaiah had not been diagnosed with his second case of Kawasaki disease. However, given what we have gone through yet again, the original sentiments inspiring this post are even stronger. It had been over six months since I had published anything prior to the post about Isaiah's unexpected second bout of KD. Many milestones had passed, including Isaiah's first day of kindergarten, fourth birthday and the anniversaries of his KD hospitalization and discovery of his aneurysms. It would be easy for me look back and reflect on how many of these moments were very bittersweet for me. I could write about the struggles we have been through this past year and how this unexpected journey has challenged us in ways we never imagined. However, in keeping with the New Year's tradition of resolutions and starting fresh (even though it is already the end of February), I prefer to focus on my "theme" for the year: gratitude.
Gratitude is good for you
I generally consider myself to be positive person, who is thankful for all the blessings in my life. However, I was especially inspired by an article in Scientific American which highlighted studies indicating that the regular practice of gratitude had positive physical, emotional and social benefits -- even more reason to count our blessings.
Things I am grateful for...
I have been very fortunate in many aspects of my life, but this list focuses on the things that I am grateful for with regards to Isaiah's journey. Here are some of the things I am grateful for:
- I am grateful that I live within driving distance of one of the best children's hospitals in the world; where the doctors not only know what Kawasaki disease is, but also know how to treat it and are able to answer questions about it. I have read too many stories from parents who are so frustrated, because they are not able to get answers from the doctors at the hospital their child is being treated at, due to lack of knowledge and experience.
- I am grateful that I live in a place where IVIG is readily available and accessible to my son. I am fortunate that IVIG is one of the treatments that is covered under our government's Ontario Health Care system. My understanding is that IVIG is very expensive and I can only imagine how difficult it must be for some families, especially in developing countries, to afford to pay for IVIG treatments. I am saddened to think that there may be children that go untreated for Kawasaki disease, because their family was unable to pay for the IVIG.
- Further to my previous point, I am grateful that my family has health coverage through my husband's employer. Isaiah currently takes four different prescription medications. His enoxaparin shots, in particular, are quite costly. These type of medication costs would be a huge burden on families that do not have any drug coverage.
- I am so fortunate that I currently have the option to be a stay-at-home mom. Isaiah has monthly blood tests that must be done at the hospital, as well as echocardiograms and cardiology clinic visits every three months. Add onto that his two hospitalizations, a follow-up visit with rheumatology and clinic visits with thrombosis and you have a whole lot of time spent at the hospital. Surely, if I had a "regular" job all of this "time off" would have caused problems with my employer and my co-workers. My hat off to all those moms who work outside of the home and are still able to manage the complicated life of a child with health issues.
- I am grateful for the support of wonderful friends and family. I am constantly mentioning this in my posts, but that is because I can never thank any of my friends and family enough. Their love and support is what has kept us going for the past year and helped us through the especially hard times when Isaiah has been hospitalized.
- I am grateful that I have access to medical professionals that are leaders in their field and specialize in Kawasaki disease. I am grateful not only for my access to them, but grateful for the fact that they are all wonderful at what they do, genuinely care about Isaiah and have done everything they can for my little guy.
- I am grateful that Isaiah was diagnosed correctly with Kawasaki disease. If he had not been diagnosed correctly, we would have no idea that he had developed coronary aneurysms, he would not be on blood thinning medications and he would be walking around constantly at high risk of experiencing a heart attack.
- I am grateful that Isaiah is here. I am sorry if this statement seems morbid and decidedly NOT uplifting, in contrast to the main message of my post. But this is the reality of Isaiah's situation. If he was not diagnosed or was not receiving the care he is currently receiving, who knows if he would be still be here. I thank God everyday that he is.