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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


The looming cloud of death

None of us know when our last days will be.  None of us know when our child’s last days will be.  All of us should treat life like it is precious and treasure every moment with our kiddos.  This is true for all parents, but…

For parents of children with special needs, death hits a little closer to home.  It’s a rarity for typical families to have to bury their child.  For us, the rarity would be that our child lives into adulthood.  We know it’s coming.  We aren’t afraid for her of what will come afterwards because we trust in the complete perfection of eternity.  But there is a gaping wound that the scab often gets abruptly pulled off and we grieve what’s to come for us again, and again, and again.

Grief hits at the most random times.  Sometimes it’s watching a father walk his daughter walk down an aisle to a groom, knowing Shawn won’t have that opportunity.  Sometimes it’s a child’s graduation, speculating if that will be something we will get to celebrate with her.  Or hearing parent’s complain about their teenagers, just wishing that Maggie could try to sneak out of the house.   It could be a birthday party and realizing how we aren’t at the same typical milestones.  Or not being invited to a birthday party, because she can't build the same relationships and nobody knows what to do with her.  Or other times, it’s listening to brothers and sisters bicker, as I try to understand what Maddox’s perspective is on siblings and how it will be to walk him through the grieving process when she is no longer with us.  All the things that typical families take for granted and even wish they didn’t have to deal with, we grieve over and for.

Other times, it’s even more in our face.  When another family no longer has their little in their arms to hold and love.  We know it’s coming.  We don’t know when, but we know the inevitable will come to us too.

Our sweet friend Harper’s death has hit hard.  Real hard.  Harper was one of the first children I ever found similar to Maggie.  And to this day, Harper is the one child that is the most like Maggie out of any kiddos we know.  The Howards’ perspective on not allowing a disability to stop them is very similar to ours.  Harper is just a few years ahead of Maggie.  Early on, Shawn would hear all the time, “Harper is doing this,” or “Harper’s mom said this or tried this.”  At one point, Penny told me, “Your child has a seizure disorder.  You can’t take her to the hospital every time she has a seizure.”  We didn’t know what we were dealing with or up against at that time.  They were already 2 years into this beast.  We did get admitted that time, but from then on took the same perspective of “we only take her to the hospital if we think she is dying.”  And…we haven’t been back to the hospital since.

When Maggie was tested for the same genetic disorder, CDKL5, I was convinced she would come back positive for it (it was negative though).  She presents just like Harper.  Some pictures I look at of Harper recently, I have to do a double take even, thinking it’s Maggie for a moment.  The girls have the same mischievous grin (when we see it), the same sassy personality, the same sparkle in their eyes, the same confident boldness, and the same fighter spirit.

We would see Harper try something and it would plant a seed for us to make something happen for Maggie.  Swimming, putting her on the horse at my mom’s (side note…Mom started offering therapeutic riding at the campground and ironically went to training at the same facility that Harper used), therapies, vision stuff, supplements, food, equipment.  This list could go on and on.  If Harper tried it, we would put it on our list to try at some point.  They shaved the back of Harper’s head, which made me more aware of Maggie’s head becoming aggravated and her hair getting matted from the friction of her head moving back and forth against the wheelchair headrest.  I took notes as I saw them invest in their marriage and actually leave Harper for them to go on a quick vacation.  Harper even welcomed in a baby brother just months before Maddox was born.  We watched as they proved it could be possible to have a little one and still care for each child well.

Unfortunately, I wish I could stop taking mental notes and leave off at the end of 2015 with the best year of Harper’s life.  But unfortunately, like Harper and many of our special kiddos, the tide quickly turns and suddenly they are gone.  We anticipate that we will be in that boat at some point.  We don’t know when, but every little cold and unexplained increase in seizure activity puts us in the point of wondering if this could be it.

Last Sunday, after already dealing with a weird skin issue, Maggie was clearly not feeling well at all and looking very pathetic.  As I told friends that day…”I don’t have the emotional energy to deal with her not being well right now.”  That looming dark cloud had already been hovering over us.

So what do we do…

We quietly mourn alone.  It’s too much for others to deal with (we get that and don’t expect it to be any different).  It’s even too much for Shawn and I to try to talk about with each other most the time.  It’s unspoken and we both know the cloud is there.

I wish I could say the dark cloud causes me to step up my game as mom and love on and celebrate every little thing with the kids.  While I do hold them a little tighter at times, I also find myself distancing myself from Maggie, in attempt to protect my own heart.  I find myself not as responsive and not having as much fight in me for her.  Her needs are met and she is still well taken care of.  She just doesn’t have my whole heart right now.  She needs that and will get me back, I am sure, but for now, Mom retreats a little for self-preservation.

We rejoice that we have others lifting us up in prayer.  Since Maggie has started her antibiotic she has been in a great mood and even better than I could ask for as far as temperament right now.  God knows my limit and an uncomfortable seizing child right now could just be my breaking point.  Keep praying for her please.  The skin issues are looking better too.

While others run away, we run toward those that are coping with death.  It is still so difficult for us to comprehend, but we try to encourage and support the best that we can.  We know that someday we will need others to run towards us.  Maggie and I are pumped that we found SUPER cheap flights and a rental car.  We will be flying into Texas for Harper’s memorial party and back out all in one day for less than $100 total!!  We will go, and I will take mental notes, even throughout Harper’s memorial, to get ideas for what we will one day have to do.  Being there to let the family know how special and important they have been in our journey is the least we can do.

We keep on keeping on. Curling into a ball won’t get us anywhere.  We know this isn’t the first child, and we sure know this isn’t the last.  Sometimes Shawn and I will even say, “when this child or that child goes, that is really going to suck”.  (yep…how many of you have that dinner conversation?!?)  Shawn did have to remind me the other day of the lesson a dear friend taught me as we stood in our first ER way back at the beginning.  “Whatever is true…let your mind dwell on these things.”  The truth is we have 2 sweet children right now.  The truth is we long for eternity.  And while we regularly witness parents burying their children, some are more difficult than others.   This is a difficult one for this Momma.

The cloud is a little darker and closer and lingers a little longer.

**I know this is kind of a downer of a post.  In the nature of transparency, with hopes that it might help others, getting these emotions out there is part of my healing process.  We are ok and we will be ok.  And…we are ok with saying that sometimes life just sucks!!**
To learn more about Harper, look up Hope4Harper on facebook or at www.hope4harper.com