A Little Something Extra

Saturday, February 19, 2011

There, but by the grace of God...

I blogged about Lois dying a couple of weeks ago.  So sad and tragic.  I think of her parents often... how Lois spent so long fighting against leukemia, only to lose the battle in the end.  In that post, I mentioned that when we hear of a child with Down syndrome dying, it feels as if a member of our family has died.

It has happened again.  But this time, to a child we know in real life.  A child whose mom sat next to me at our last Down syndrome parent group meeting.  A child whose mom was in Orlando last summer at NDSC to learn more about how to advocate for and teach her daughter.  A child whose mom went to a retreat for moms of kids with special needs at our church last November.  A child whose parents adopted her... chose her... love her.

Ten months ago, we heard a critical care doctor utter the words no parent should ever have to hear: "I'm concerned about Micah's ability to survive this."  I don't know if Mary Jo heard those words from a doctor or if things went too fast for that conversation to even occur.  Elsey, age 11, came home from school on Thursday with what they thought was a GI bug.  They took her to the ER that evening.  She died at 1:00am.

I've been a mess about this.  No parent should have to bury their child.  I don't know what Mary Jo and Winston are going through right now.  But we came very close to knowing just 10 months ago.

The same week we almost lost Micah, there was a little girl, Carly, in Michigan who died very suddenly.  I had visited Joany's blog and read about Carly just a week earlier.  Micah was still on the ventilator when Carly died, but he was stable.  I felt horrible. Guilty.  I don't understand why God spared Micah and not Carly.  Joany and I have over 100 mutual friends on Facebook but I haven't had the courage to "friend" her.

I'm so intensely sad for Mary Jo and Winston.  Please pray for their family in the midst of their grief.  And Elsey... may you rest in peace in the loving arms of Jesus.  We'll miss experiencing your smile and joyful heart.


Runningmama said...

Oh I can so identify with what you write here. Lois death has not left my thoughts over the last weeks especially since my Emily is currently undergoing treatment for leukemia as well...and this week her parents were on my mind even more as Emily got a bacterial infection and then sepsis and it was the first time I had really feared for her life and I just can't even imagine what Lois and Carly's parents are going through, it's just too painful. And to think that some people don't think a life with DS is valuable pains me even more!

Andrew said...

So sad, thanks for sharing. Will pray.

Cory said...

It is so heartbreaking to hear this story. I know when you posted about it on FB, I questioned "was it menengitis?". I hate unknowns. :-( And I feel like it is it a loss of a family member often too. I Love our kiddos so much. Life is so fragile, and I find myself trying NOT to take anyhthing concerning my own kiddos health for granted or the days we have together.

CJ said...

Joany is a good egg, go ahead and friend her! Tell her I sent you, if it helps! You guys are one step closer to God with all you endure with your kiddos. So much strength. I'm honored to have you in my Downs family!

Ria said...

So heartbreaking. :-( i'm praying and giving my kiddos extra hugs and kisses.