Life goes like this: Grow up, get married, have kids, live happily ever after, right? Well, somewhere in there, life gives us a reality check.
We were told when MaryEllen and Kevin were young, to not expect them to live past 2 years old. When we got past that hurdle, it became 5 years, and then 10. Why we have been blessed with all these ‘extra’ years with them, I don’t know.
Yes, doctors don’t know everything and they are not God. They do know though, that children like MaryEllen and Kevin, are more likely to have complications like pneumonia and seizures that could lead to devastating consequences. Like a note that is scribbled and stuffed in a back pocket, these thoughts are always there. Is this bout of congestion going to lead to pneumonia, and then hospitalization, and then never getting better? Was that seizure something I shouldn’t have taken lightly because it was the one that caused more brain damage that would never get better? We march on day-to-day, though, living in our rosy world of another tomorrow.
We’re not alone. Many families carry that note around in their back pocket too. Families in the special needs world know all too well the fragility of life. In our small circle, we always know of loving parents whose child is very ill, or on hospice, or constantly in and out of the hospital. It chips away at my heart, knowing that our family could easily be ‘the one.’
To all the families we know that have gone down the path no parent ever wants to travel, please know that through your stories, and loving dedication to your children, I love my children more. I take the advice you give; the same advice you all share after losing a part of yourselves: I hug my children more and love them more and appreciate them more every time I hear your heartbreaking news.
Know that I am always thankful for another day because I know you didn’t get one. You and your children have taught me so much. Thank you.
That crumpled note has good advice for all of us. I pull it out and through the wear and tear of life and back pockets, I can clearly see, “Dear Mom, Love me today.”