Sharing our story to raise awareness of Kawasaki's disease

On October 19th, 2011 my 2 year old son, Isaiah, was diagnosed with Kawasaki disease. Life has not been the same ever since. I want to share his story to help raise awareness of this disease. We were fortunate that Isaiah was diagnosed and treated for his illness. However, Isaiah developed multiple aneurysms in his coronary arteries as a result of Kawasaki disease. If left undiagnosed, this disease can result in death.

If I can help even one child by sharing our story, then I will have done right by my son. He is such a brave, strong boy and I know that when he grows older he will be glad that I shared his story.

Thursday, February 28, 2013

Gratitude

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.  
Being here is something we should all be grateful for.  We should be grateful that we are here and those we care about are here.  Even though Isaiah's life may be perceived as more delicate, because of all that he has been through and as a result more precious, in reality all of our lives are delicate and precious. You never know what tomorrow may bring.  So go be grateful.  Go count your blessings and share them.  Go thank someone for something.  It's good for you.

4 comments:

  1. Hi Carin,

    It's very sad to hear that Isaiah had KD the second time. But your post about being "Gratitude and grateful" is very up-lifting. I'm very happy that you are still so strong and positive and still inspiring others. I am also very grateful that my son, Ethan is doing fine too after having KD at 3 months old. He is now 17 months now.. I agree with you about how precious and delicate life is. Guess we should live life with "Don't worry and be happy!"

    Take care and looking forward to your next update. Thanks very much for your inspiring blog.

    Betty

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    1. Hi Betty,

      Thanks so much for your kind comments and for taking the time to read my blog. I am so happy to hear that your son is doing well after having Kawasaki disease. That is definitely something to be grateful for! I wish Ethan continued good health.

      All the best,
      Carin

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  2. What a wonderful post! I love all the things you are grateful for. I think having a child sick really puts life into perspective! Thanks you for sharing this and commenting on my FB page.
    XO
    Kristin

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    1. Thanks for your kind comments, Kristin and for raising awareness of Kawasaki disease through your much-followed blog. I wish your son continued good health!

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