Loving Landan

Why blog? That is a fabulous question that I don’t quite have an answer to.  While Landan was hospitalized, I shared more on social media than I ever have before.  We’re pretty private people.  But I felt called to change that.  I thought at the time that it was to gather prayers – let’s show this community what the power of prayer can do.  But our prayers didn’t bring about the miracle we had hoped for so that can’t have been the reason.

While in the hospital, I had multiple conversations with nurses about doing something like this.  Proposed by them.  Encouraged by them.  They felt that Andy and I had something to share.  I’ve been trying to figure out what that might be.  There are plenty of platforms out there with multiple sources for child loss, medically complex children, Down Syndrome, bereaved parents, you name it, you can find it.  And it is wonderful.  I’ve utilized some of these over the past year.  In preparation for, support for, and support after Landan.  I love this movement towards widespread normalization and support for hard life experiences!

But why would I have anything different to say?  What were these different people seeing that I was missing? The only thing I can figure is the specific journey we ended up on.  Landan had an amazing prognosis – Andy and I were so excited for our long life with Landan.  What we went through was on nobody’s radar.  He ended up being so incredibly unique and far more complex than expected that even his doctors struggled to figure him out.  He was not lost after a quick and sudden illness – his hospital stay was long and hard.  Landan’s third and final stay in the PICU was 133 days, and it resulted in a loss.  We didn’t get that wonderful survival story I love to read about. He is our fifth child and our ENTIRE family sacrificed to give Landan what we felt he needed and deserved.  Somehow, Andy and I managed to stay on the same page, united in our fight for Landan, while juggling living separate lives, split between a critically ill child in the hospital an hour and a half from home and four other children at home, homeschooling, working, working on a degree, loss of a parent, and everyday life stressors.  For many, part of the healing process is having another child.  That’s not an option for us – I had my tubes tied. 

Any loss of a child is devastating.  And to some degree, similar.  But there are unique aspects to it as well.  I will never fully understand those who struggle with fertility or experience miscarriage/stillborn births because it’s not a journey I walked.  I can fully understand the pain of losing a child and the difficulty of navigating life moving forward. 

Congenital heart disease affects approximately 1% of births each year.  Down Syndrome occurs in about 1 in 700 births.  The average length of stay in a pediatric ICU is 5 days.  Landan’s story isn’t one that occurs very often.  I was once asked that if I had found anything that could have related to what I was walking through, would it have helped me through it.  And I can’t answer anything other than yes.  So my hope is that somehow this falls into the lap of someone walking a similar path. But even if that’s not you, and you’re here because you’re curious or nervous, looking for reassurance or testimony.  My prayer is that somehow, someone, somewhere will find this blog and find hope.  Find joy.  Find strength.  Find Jesus.