Tuesday, June 12, 2012


I glanced down as my feet hit the pavement, step after step.  I watched as his head bobbed perfectly in sync with the rhythm of our worship music.  My gaze shifted as I noticed that her feet were trembling perfectly in sync with her seizure.  The wind blew perfectly in my face and as I closed my eyes I could feel that familiar anxiety.  I listened.  To the sound of birds chirping in early morning sunlight, workers starting their day, and cars passing quickly by us on the street. 
Then I focused in on his voice, singing out to Jesus as we stroll through our small town and her noises-none of which have rhyme or reason.  Grunts and giggles are the only sounds I hear from my sweet [almost] two year old girl.
 Almost one year ago I posted a comparison post between what Braden was doing at 10 months old and what Mabel was doing.  I wanted so desperately to show people that something wasn't right with her.  And today as I walked my 4 miles, pushing these two kids side by side in their double stroller I felt an urgency to prove it once again.  But then I snapped out of it and reminded myself that this needs no explaining.  This is my life and it does NOT need justified just because someone wants their issues to be bigger than ours. 

Yes, someone stated that they believe we are exaggerating Mabel's medical issues. 
And I believe they want their child's situation to seem worse; which is sick because who wants that...really?
And I wish to God that I were exaggerating and I was just some crazy mom who thought her little girl was sick.  I wish to God that I could look at them in the eye and feel deep pity for their child who is typically developing with a few minor issues.  I wish that I could open just one report and see that everything is normal with Mabel.  I wish that I could listen to our geneticist talk about a cure for a simple disease that our daughter may have and not 10 deadly diseases that do not have one single treatment or cure.
But I cannot. 
 I wish my little girl could be fed without throwing up.  I wish that she could consume calories and that they would be substantial enough to help her grow.  I wish that I didn't have to insert my finger into her rectum every time that she has to poop in order to make that happen.  I wish that she could sit up longer than 2 minutes without falling over.  I wish that she didn't laugh at nothing and cry over everything.  I wish that she could see me consistently, or at all.  Because we don't know either way.  I wish that her body would stop moving for ONE freaking second.  I wish that she could chew without gagging and recognize that she is being fed a bottle.  I wish that my two year old wouldn't need a bottle, or a g-tube for that matter.  I wish that she would give me hunger cues.  I wish that she wasn't at a 3 month old's level developmentally.  I wish that she would roll over.  I wish that she would not seize all day and night.  I wish that she would bare weight through her legs.  I wish that she could be aware whether something is hot or cold and let us know.  I wish that she could feel pain-yes I wish that.  I wish that she didn't take multiple medicines a day and see multiple therapists a week.  I wish that we didn't have a dozen specialists, all who are as perplexed as we are by this little girl.
 I wish there were answers.  I wish that her muscles were strong.  I wish that her body didn't fail her.  I wish that she wouldn't grind her teeth or bite into her tongue.  In fact, I wish I never had to see that tongue sticking out for no apparent reason.  I wish that she wouldn't twist her legs backwards and that her fingers weren't starting to criss-cross. I wish that she would go to someone other than me for a minute of my day.  I wish that she had enough energy just to make it through a feeding without making me feel guilty for even trying.
 I wish that people weren't so mean. I wish that God would intervene.  I wish that my little girl was walking and running and may have the chance to do either some day.  I wish that we weren't facing a hard reality no matter how you slice it. I wish that she would get better. 
 But wishing doesn't get me anywhere.
I wish a million things-none of which are going to change by doing so. 

I do not have to justify Mabel's condition to anyone.  If you lay eyes on her for one second it is far beyond obvious that this is one special little girl.  No one has answers and because of that I feel like people are free to make their own judgements.  It's sad when a diagnosis, even that of a rare and deadly disease, would be a blanket of proof for a family who has only asked for support. 
 Of course I was devastated to hear that someone would talk about our girl in any way other than that she is a gift and a gem.  In my moment of anger I felt like the only way for people to truly see how bad it is would be if she were lying in a baby casket.  Again how sad and sick for a mom to have to think those things and feel that way.  But the truth is, we don't really know how real of a possibility that is and so for someone to say such petty things about our family in the midst of a life that is very dramatic already is just plain ignorant. 

My whole goal has always been to take the best care of Mabel that I can, to seek the best doctors, and to educate people in the process.  I refuse to let such hurtful things affect how I do any of that.  One of my greatest flaws has always been that I want everyone around me to be educated or at least to try and act smart.  In this case I feel like you cannot argue with stupid.  I cannot explain the things that go on in Mabel's body to someone who simply will not understand and therefore I would never try. 
I will continue to try desperately to show grace to those people who choose to exercise in incompetence and ignorance.
I would give my life for things to be normal for Mabel for even one minute.  I would give my life if I could make it all work for her just right.  I would trade everything for a chance to correct what needs correction and change what needs saving.  But I don't have those options.  The only option I have is to be here with this little girl now and do the best I can.  In this home, in my day to day life with her, nothing changes by how other people view us.  Nothing changes.
I wish that by someone saying we were exaggerating this that it would be so.
That suddenly I would snap out of my exaggeration and my little girl would be whole and well.  But sadly that is not the case and it will never be. 

I will continue to pray for this family as they deal with their own child's issues and I can only hope that they would just be grateful for the things in their life that could be so drastically different.  Like I have mentioned before, no one is exempt from having a child with disabilities like Mabel and I just hope that people can stop for a minute and thank God that their life is the way that it is. 
Even now, even in the midst of it-I sure am.
Neuro appointment tomorrow.  Please pray that we can find a solution to all of this crying before I literally beg to be admitted.
Love to you all.  You are my rock.


Diane said...

Hugs and prayers. We too have dealt with others not "seeing" how sick our daughter is...

Thank you for sharing this today- I feel less alone.

Amy said...

R, So glad to see/read you back here on your blog. I am unsure how to put into words how I feel for you & your family re: this news of "exaggerating". Bless you for cont to pray for them & their child. Please know that your "internet family in Christ" is always thinking & praying for your Mabel and your sanity. I don't pray enough for that, starting today,I will. Again, your words are powerful, moving, heartfelt & begging us all to try & understand what it is that you go through each & every day. I pray for God's touch on Mabel & that she would have one great testimony :) Love ya.