Mourning…

Late tonight, Samuel, a little boy from back where we used to live lost his battle against an incurable mitochondrial disease.   He was only 4 years old.  His mom was a wealth of information for me as I was trying to navigate the Texas medicaid system, and she has been such a source of strength and understanding since then.    When I heard the news from a mutual friend, I just lost it.

Before Hannah, I never knew anyone who had lost a child personally.  I knew of people who knew someone, but that was the extent of it.

This week, two other young children lost their lives against rare, incurable diseases.

• Mallorie, a beautiful little girl whom I met when Hannah was in the PCU this summer, passed away earlier this week.    Her mom and I shared quite a few conversations during those two weeks on the PCU floor before we were transferred.
• Mario, a handsome young teenager, lost his battle against Gaucher’s disease type 3.  Yes, type 3.  His death also hit me hard as it was a slap-in-the-face reminder that type 3 is just as deadly as type 2.  It may not happen as quickly as type 2, but in many cases, type 3 also robs children of their lives.   His mom was one of the first people to reach out to me when Hannah was diagnosed.

Before learning about Samuel, I had a wonderful phone conversation with an old friend who had lost her son almost a couple of years ago when he was just 11 months old.  I love talking with her because we both can be very frank about our kids situations and how we are feeling.  No beating around the bush, no candy coating, no avoiding.  Just flat-out, this is how I feel.

It was actually just about 20 minutes after I got off the phone with her that I learned about Samuel.

I feel really devastated right now.   Scared.  Heartbroken.  Angry.  Anxious.  I’m glad Daddy was sleeping because I even found myself crying tonight.

This new world I have been thrust into, a world where children die because of lack of research, treatment, and cures.   A world where there are no telethons, no celebrity public service announcements, or no major fundraisers to help save our children.  A world where conversations between moms don’t include gardening or gossiping but talk about medical situations and fear of our children dying way too soon.    A  world where moms and dads talk about funeral arrangements instead of elementary school.

Three children that I knew about personally passed away this week.   Three.   There are quite a few others whom I have grown close to over the past two years that I worry constantly about because I know that their lives may likely be taken away way too soon.

I know saying “It is not fair” is just not the politically correct thing to say.  But screw it.  IT IS JUST NOT FAIR!!