I joined a Congenital Neutropenia group on Facebook. I know this is a severe condition, but Selene is doing so well that I had no idea how bad it can be. Also, with people from all types of situations and different countries posting here, I found that there are so many struggles. While it is easy to say "Why us?", I realize that once again, we are beyond lucky, even in this situation.
We are blessed....
1. Between our primary health insurance and a secondary plan through the state of Pennsylvania (I promise to never complain about state run liquor stores or taxes again) we have minimal to no medical costs.
2. Dan works incredibly hard so that I can be home with the girls.
3. Because I made the decision to stay home long ago (thus unknowingly adding a layer of protection to Selene while undiagnosed), we planned our financial life around that. Many neutropenia parents have to work and then stress over the sicknesses their children pick up at daycare.
4. We have so much family who readily help us.
5. We live so close to CHOP. Many families drives hours, across states, to get their children to specialists.
6. Selene has never been hospitalized.
7. Selene has no other compounding conditions/illnesses, which seems to be quite common with neutropenia.
8. We have two beautiful girls who absolutely love each other and will be there for one another always.
9. Ainsley will forever know the joy of saving her sister.
10. And finally, clorox wipes were invented and can be purchased in bulk. I have a feeling we will use millions of them in the next year :-)
....and I fall asleep counting my blessings.
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