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.

Matthew and two candles

More photos to come soon.  But I thought I'd share a video of Matthew blowing out candles on his birthday cupcake.  He somehow had it in his mind that he HAD to say "two" before each blow.  Trust me... it repeated many more times than I will share in the video. :-)

Lois

You might remember me posting about Lois in October.  She had leukemia.  She kicked it.  And then it relapsed.

Lois doesn't have leukemia anymore.  Lois died yesterday, peacefully at home.  She was just three years old.


It's difficult to explain to those outside the Down syndrome community that when a child with Down syndrome dies, we feel it at a personal level, even if we didn't know the child in real life.  Maybe that's because, as parents, we exert a lot of energy advocating for our kids.  Yes, we all do that for our kids, whether or not they have Down syndrome. (Just thinking... Am I destined to offend *someone* in this post? yep, most likely).

Maybe it's because our children with Down syndrome are just a little more "vulnerable" than average.  Maybe it's because we have a pretty good idea they are going to experience discrimination and bullying in their childhood and beyond.  Maybe it's because we KNOW those things and we are passionate to try to CHANGE those things.  Maybe it's because we spend so much time helping them reach milestones that typical kids reach without much effort.

For whatever the reason, I feel intense sadness over Lois' passing.  And I know I'm not alone.

Rest in peace, sweet little girl.  Enjoy your snuggles in Jesus' lap.  I can't imagine the depth of sadness your mommy feels because you're not sitting in HER lap today.