Wednesday, June 13, 2012

what a day.

There is nothing better than the feeling of a brand new pair of socks.  Tonight after coming home from 6 hours at the neurologist, I snuck upstairs and ripped open the new pack that I had bought yesterday.  I have never been more thankful for the comfort of socks than I am tonight.  It's strange but sometimes the little things; the familiar things are what pull me through.

As soon as Dr. K walked through the door and asked how things were going I started to cry.  I told her that I had promised myself I wouldn't (knowing that I would anyway) and proceeded to cry my way through an explanation and account of the last few weeks.  How do you tell someone in detail about the hours your child spends crying for no apparent reason?  How do you possibly portray the amount of madness that is contained in these 4 walls when there is no consoling your own child?  How can you put into words the amount of guilt you feel for your other children when all of your attention is being given to this one child who cries and cries and cries?
Well it turns out-all you have to say is that.
All of it.

With a knowing look and a gentle nod, Dr. K agreed that it is time to try something different in order to manage Mabel's crying and irritability.  We are starting her on a new medication immediately.  This is a scary phase for me, although I know it's best.  To start Mabel on a new medicine is hard enough.  We have to watch for changes, side effects, etc. just as we always do when switching meds or upping a dose.  But this time we are adding a medicine that is part of the sedative family and with that typically comes the need to up the dosage more frequently.  It's always a very tricky battle in my mind because without the medicine she is seizing and miserable and on it...well how long can she be on it?  And how much will she have to take for it to be effective?

...And then I try hard to stop myself and remember that we are only in the today. 
Today she cried and arched and stiffened and seized and jerked so much in the doctors office that I was confident in our decision to more forward with a calming medicine.  Of course when I say that it is part of the sedative family I don't want to give the impression that we are 'sedating' her.  We are not.  This type of medicine is given for irritability when the issue is a brain or neuro one.  We may have tried a mood stabilizer or even an anti depressant if the problem was more in the moods.  In Mabel's case, she has a neuro issue and that is why this decision was made.  This type of medication also tends to help with seizures that have sometimes been uncontrolled with other medicines. 
We're hoping that is the case!

In our visit Dr. K reminded me once again that finding a treatment that works for Mabel will probably not be any more likely with a diagnosis. 
Hard to hear but true nevertheless.

After leaving her office we walked down the hall.  Our neurologist and geneticist are in the same building and we needed to have blood tests ran for genetics. 
Remember the best appointment ever that we had a few months back? 
Today reminded me that God has led us exactly to the right doctors at the right time.  Dr. K (neurology) is very gentle, quiet, meek, and her approach is very rational.  I love that about her.  She is truthful and kind, compassionate and wise.  In the beginning of this process she was the first Dr. that I felt like would step up for us and help lead us in the right direction with testing and treatments. 

Today Dr. S (genetics) saw us in the hallway and wanted to see us even though we didn't have an appointment.  We got to visit with him for about 15 minutes and in that short time I felt encouraged yet again.  He, too, is very truthful and honest.  He knows that many of the tests we are running are a long shot.  We may or may not find answers.  This may not work for us.
He is very aggressive and quick.  He is witty and determined.  He is still as perplexed with our girl as ever but makes me feel like he is still seeking answers for her. 

While doing blood work I was told that the nurses who were entering Mabel's codes hadn't seen such complex tests.  Even our wonderful, beautiful nurse (who may or may not be reading this now--Hi there!!!) said that she hasn't seen something like this in months.

We got the blood work drawn and were on our way.
And I cried as I walked out the door.  I cried putting Mabel in the van.  I cried over her after she was buckled.  I put my sunglasses on and I cried for 15 minutes on the drive home. 
A hard, wet, hot cry.

Because days like today are a reminder of all the things in this reality that can be so discouraging.  Our baby's body is wreaking havoc on itself and we don't know why.  No one knows why. 

 People were watching me as I handled her in the waiting room and a kind woman told me that she could tell I was doing a great job with her.  I told her 'some days.'  She had gentle eyes and I shared this blog and our facebook page with her.  As I drove home, praying, I just kept thinking that if I'm supposed to do something in this journey and in this process I hope to God that I don't miss it.
Please God don't let me miss it.
So I'm getting better about sharing our story with people one way or another because she's worth it. 

Other people stare and don't say anything.  Who knows what they're thinking.  If I were on the outside looking in I would probably feel alot of pity for that tired looking mommy who is doing her best to just laugh and not cry.  Sometimes I get easy stares and anxious giggles.  Sometimes I get people who snap in her face and try desperately to get to look at them.  Sometimes people look away, uncomfortable.  I'm used to all of the above now.

I drove away from today feeling overwhelmed with news that I have heard a trillion times and news that my heart knows already.  Our little girl's brain is sick.  We don't know why and as of now there is very little we can do to help her.  In alot of cases, seizures can be controlled with medicine.  In Mabel's case, we haven't been so fortunate.  I don't know why and if I let myself ask, or even think about it I'll start the vicious cycle of anger and sadness once again. 
We don't know why and that's that.

What I do know tonight and what I can find rest in is this:
Our little girl, who is so beautiful to us is even more beautiful to our Savior.  He created her-perfectly.  He knit her together with a mere thought.  His hands formed her in my womb.  He called her to this life for a purpose [and a greater one that we will ever know.]  He knows every hair on her head and every part of her was designed in unique goodness.  He is her Father.  He cares deeply for her.  He nurtures her and caresses her.  He called her.

He knows me.  He designed me.  He called me for such a time as this.  He gave her to me.  I don't know the reason.  I don't even need to believe there is a divine reason other than the fact that I am her mother and that is the perfect plan.  Because although I don't believe he made her this way, filled with sickness and suffering..I do believe that He intends to deliver her from it whether here or in Heaven.  Because He is a good God.  A God who knows and understand and heals. 
The answer isn't always "yes" friends.  Sometimes the answer is just plain "no."
And I can accept that. 
Because I trust Him and all of His ways.

Nothing here on earth can shake what I know to be true of eternity.  My hope is in the Lord and the Lord alone and someday I know we will find rest and peace with Him.  Until then, this is all just a gift.  This is all just a delicate and precious blessing.  This one life that we get is beautiful and nothing can alter my thinking.  Not even a solid "no."

Tonight I am resting in the blessed assurance of Heaven and the Lord that saved me. 
It's the only thing I'm confident of at all.

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