life puke.

The weeks seem to become more of a blur. 

Spring has arrived, the trees are in bloom, the tulips have already appeared and withered away.  It's hot; humid, stuffy.  The kids are anxious for school to be out for summer while I'm a little more nervous about what the days with them will look like.  I'm excited to have them home and hope we have the chance to make some really great memories here.  It's just that the happy high I was on for quite awhile has faded and the heavy grief has swooped back in.  And not just for me, I see it in them too.  The worry and wonder.  It's our life so I think it goes unsaid often, but we all feel it. 

 

The kids attempted the carnival yesterday.  Braden puked and Nora was on the verge.  I had to laugh because that seems so very typical of how our life is.  The fun and excitement of something lasts for a time before we all get hit with the twirling, dizzy reality and we find ourselves at one point or another standing around on hot pavement barfing.  I couldn't help but watch them literally puking and think of the irony; the figurative spilling our guts out over life's wicked ride. 

 

This week has been another really tough week for me.  Better in some ways, harder in others.  It took a long time for me to finally write it when Mabel stopped sucking and taking a bottle because I knew in my heart what changes were to follow.  Now I'm here, just weeks into those changes and it's still overly difficult every single day to face the new reality we are in.  I look back and I almost can't wrap my mind around the fact that my once healthy-looking baby is so very sick.  But then I have to try and comprehend that even when she was healthy looking (and in a lot of ways acting), I knew she was this sick.  It's a lot to wrestle with. 

[photos from 3 years ago]

 

So where are we now?
Well the changes are drastic. 

Mabel's tummy isn't absorbing her food properly.  She went from eating 8 ounces, 5 times a day to eating 5 ounces, 3 times a day.  Essentially she cut her feeds in half.  And now, of the 15-20 ounces a day that she is getting, she is only absorbing about 9-10 ounces of that.  She isn't absorbing her meds properly from what we can tell and she has now vomited several times in the past week which she hasn't done in well over a year.  

 

Her body that was once so jerky and agitated has stilled.  For the most part her body is very calm, without medication, which is a strange thing to experience.  For almost 5 years I have watched in horror as her body has twitched and jerked and then suddenly, nothing.  I think back to the batten disease conference that we attended last summer and asking several parents what medications their children were taking to make them be so relaxed and when they answered, 'nothing,' I was almost horrified.  It was helpless for me knowing that no medication had helped Mabel and yet these kids were still on their own.  What was I going to do? 

Most of the parents remembered a time when their child had jerked in those ways but said that at some point they just stopped.  It was a phase that they no longer really remembered, thankfully.

 

In that way, I think my prayer for mercy has been answered but I almost hate to speak too soon.  She has still been agitated as far as crying goes but a new medicine seems to be helping some, though it takes hours to kick-in when truly, it shouldn't.  I've got the timing down now so by noon each day we are in a little bit better way.  A couple hours of screaming compared to twelve is truly nothing at this point. 

 

Last night after the house was quiet and I was just up alone with my thoughts, I snuck in her room to check on her.  Typically I try not to do this as to not wake her but she had puked before bed and I wanted to be sure she was propped up and safe.  Her color had me worried and I checked her respirations.  She stirred just slightly, but with a smile.  I climbed up in bed beside her and put my ear to her little chest and laid for a long time and wept over my baby.  I felt her start tapping and heard her giggle as I cried.  Normally I'd be so careful not to wake her but in these last few weeks I'm just so thankful to see her awake at any chance I can get because for me there is an urgency to see her eyes as often as possible.  I held her for a very long time, wiping my own tears and her saliva.  She turned her head gently to one side and her heavy lids consumed her.  As I watched her sleep, I silently thanked God for her.  All of her. 

And all of this.



Every day that she wakes is a really great day. 

Though they are only going to get harder, they are still incredible.  I am locked in and really ready for the road ahead but it sure doesn't come without total consumption. 

My body literally aches from the sadness and exhaustion.  It is difficult to eat, difficult to sleep.  The emotional energy that I've worked so hard to store up for such a time as this is being spent rapidly.  But I'm amazed at the grace that is poured out over me each morning. 

 

God is really faithful in carrying me through each day.  And He shows up even when I'm cussing him on a country road all alone.  He shows up in my anger and frustration, in my filthy, self-consumed sadness.  He shows up in my belief or doubt.  He shows up and brings a peace I can't explain. 

It's all over her and I pray, all over me. 

Because death is part of life and the journey toward Heaven can be beautiful.  The suffering that I have watched her endure is nothing compared to the joy that she will one day experience. I think she knows that as much as I do.  I pray I can be as strong in these comings days, weeks, months, or years that she is with us as she has been all along.  She inspires me every day, without even trying. 

Thank you to everyone who is reaching out to me. 

Your texts, cards, calls--I so appreciate them. 

 

I'm a little inside of myself lately and I am grateful that you're patient and that you understand.  I am thankful that you're faithful to love me through it and see me on the other side of it all.  That is the most profound proof of love and I'm so lucky to have such amazing friends, near and far.