When Someone with your child's diagnosis passes away




Something really interesting happens when you observe a child die from the same catastrophic diagnosis that your child has.


Something really heart-wrenchingly hard happens when you watch other parents mourn the life of their child who passed away due to the same unruly syndrome that your child has.


It’s a transformation of sorts:



When you recognize that it could have so easily been your child--

When you realize that nothing, truly NOTHING is preventing it from being your child the next time--

When you have walked alongside these parents and you know that just like you, they have fought, and advocated, and done everything for the well-being of their kid—still they could not save him or her—

It changes things.


I’ve always known the statistic, but this year the truth of my child’s diagnosis hit me in a hard way as I watched one funeral announcement after another come across my social media feed.


And as my heart pondered these things, and ached with these people, and begged God for mercy for my own child--- I knew something was happening, a shift in my thinking.


It became overwhelmingly apparent that my number one calling in this lifetime is her. Yes, first and to the best of my ability protecting her, advocating for her, fighting for her. There is truly nothing more significant I can do with my time and energy.


With that in mind, with those other little faces in mind, the ones who are no longer here on this earth--- my first instinct is to hide my sweet girl in a bubble. Mama bear comes out in a hurry and all my protective instincts scream “just keep her alive—you need her—you need her to live.” And so I think of all the ways in which I could keep her from harm. I recognize that there are some very practical ways in which I am able to protect her and I better be doing those things. With everything in me I will fight to ensure I have the correct tools and resources to do EVERYTHING I can for her livelihood.


BUT, as I pinpoint all the potentially dangerous aspects of life—I realize that even if I did everything in my power to protect her, there are simply no guarantees. And man, to live in a bubble at all times—that’s just not much of a life, is it?


I became keenly aware that in my effort to protect her life… in some ways I could be stealing it.


So first, PROTECT HER—yes. That’s so important.



BUT THEN, let her live.


This is the big one that settled upon my heart. As if God was whispering these words to me over and over again as my own fear and anxiety crept in and threatened to hide her away from the world.


In your attempt to save her—don’t take away her life. Let her live. Let her play. Let her enjoy things.


Does that involve risk? Yeah, it does.


BUT being increasingly aware of her numbered days has inspired me to LIVE and let her LIVE.

It has inspired me to seek more than survival—but a life that thrives.

It has inspired me to be brave and to experience new things—even when I’m terrified.


My protection of her life goes beyond just keeping her physical body alive—it’s a purpose to make each day count—to fill it with love—to find the joy.


I recognize that there are portions of our journey where this isn’t do-able. There are portions of this journey which require us to give up thriving for a time in order to literally keep our children alive. Please know, I have been there and I’m not discounting the reality of this truth.


But when I look back on this journey as a whole— when it’s all said and done-- I want to see a child that LIVED. And I’m the one who sets the tone for that. I’m the one who gets to make that choice.


SO today, as I think of those lives that were unfairly stolen from this world too soon—I remember to purpose it in my heart—Protect her, yes—AND THEN let her live the most beautiful life I could ever create for her.


Tomorrow is not promised to anyone.


"Do not boast about tomorrow, for you do not know what a day may bring." Proverbs 27:1


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