What I Haven’t Said

The cold rain comes down from a sad, cold sky.  The windshield wipers do their best to slap it away, but it’s still hard to see.  It feels as though the clouds are crying and aching with us.  I feel numb, yet so raw at the same time.  A juxtaposition of my soul.  Afraid yet strong.  Weak but steadfast.  I once heard someone say they were “strong at the broken places” and oddly I felt that exact same way.  As my hands gripped the wheel, my knuckles white with anxiety, I cried.  I cried like I had never done before.  I heaved so hard it actually felt like my ribs were going to break, my lungs might collapse.  It was animal-like.

Beside me sat a white box addressed to a genetics lab.  Inside was a small vial of Moseby’s blood that was taken at the local children’s hospital.  {He had laid so still while they took his blood.  Large tears rolled down his cheeks and he looked at us, questioning us, but he did not move.  My sweet boy!}  Now I was on my way back to the genetics lab so they could ship it for us.  I couldn’t help but look at the box at every stop light I came to.  Perhaps I should just throw it out the window and drive home.  Act like this was all some dream and that we didn’t need to know.  We could just pretend that this wasn’t a possibility for him.  But my head told my heart that it didn’t make sense.  We needed to know.  We had to find out.

Oh, my dear, darling boy.  Our much prayed-for blessing.

When Moseby was a little over a day old, still in the hospital in fact and before any paperwork had been signed, we found out he had a 50% chance of having a rare genetic neurodegenerative disease called Machado-Joseph Disease or SCA3.  It’s specifics are easily Googled, but suffice to say it scared us to our core.  Not enough to walk away from the “situation”–an adoption term that means baby–we were already so head-over-heels in love that we just laughed when the caseworker mentioned that we didn’t have to accept his placement.  He is our fate.  Our destiny.  He is our son just as much as if he had come from my womb.  So we signed the papers, cried happy tears that we were a family of four, and began our lives together.

At our first appointment with our pediatrician when he was two days old I mentioned the possible condition to the doctor.  His happy, jovial mood instantly changed.  ‘We’ll get you into with the best genetics doctor in Atlanta as soon as possible,’ he said somberly.  I think that’s when the reality set in that this could be something bad.  And later C. held me as I sobbed in the pediatrician’s parking lot, our newborn son asleep behind my seat.  We came home and told our families about this possibility.  They all said to not worry about it until we knew for sure–after all, there was a 50% chance he didn’t have it!  We had to think positive!

And it turns out genetic testing and counseling is a very busy business.  We were told we would have to wait over nine months for an appointment and that they could see us first thing on December 12th.  They asked if they needed to send us a reminder card and I laughed nervously.  No, 12/12/12 would be forever etched in my brain.  We began the wait for our appointment.

I was certain as the days turned into weeks and those weeks turned months I would forget.  And I did during the day.  I would see this wonderful, perfect little boy checking off milestones left and right.  Gaining weight, growing.  Smiling, cooing, being an absolute joy.  But at night I remembered.  Each time he awoke I would look at his face in the soft moonlight as he sleepily drank a bottle and I would pray.  More often than not I would pray with such fierceness that tears would roll down my cheeks unto his head.  Please God, PLEASE.  Please let him live a long, healthy life.  Do not make him suffer.  Do not give him this disease.  Please keep him healthy. I said the same prayer every time.  Repeating it like a mantra.  Oh, how I prayed!  Oh, how I hoped!

Because as parents, what do we really want for our children?  Happiness and health.  Sure, success and grandbabies and closeness are all wonderful things, but in the end we want them to be healthy–able to physically do what they want–and happy.  The thought that my baby may not get to experience a healthy life and that his life would be cut short?  Well, it physically hurts my heart.  And so I prayed.  And prayed.

The genetic counselor said that normally the test takes only one to two weeks {instead of looking at his entire DNA, they look simply at chromosome 14q}, but because of the holidays it would be after the first of the year before we knew the results.  So we celebrated Christmas and New Years the best we could.  I would often find myself staring off into space, realizing my cheeks were wet.  Sometimes I would cry and C. would hold me and say, ‘Natalie, you can’t think this way.  He might NOT have it!’  But I cried still.  I honestly didn’t understand why my soul hurt so much, of course, now I know.  I was grieving the loss of a “normal life” for my son.

Finally, we received the results.  Our genetic counselor called us last Thursday.  As soon as I answered the phone, I knew.  Her cheerful, upbeat voice was replaced with sympathy.

Oh.

But as she told me the news, I didn’t cry.  I realized during the phone call that my heart knew he had it all along–that’s why I had cried so much the past ten months.  This mama’s heart–this mother’s intuition–knew that my perfectly created son has Machado-Joseph Disease.  We don’t know when the onset of his symptoms will be–we are now fervently praying the onset of this disease will be early adulthood, as oppose to…well, much sooner.  We’re praying for the researchers that will hopefully find all sorts of treatments for the symptoms he will have.  We’re praying specifically for some studies going on in Portugal that are trying to block a molecule called Calpain {…which makes the extra protein that Moseby’s brain will produce eventually into fragments…and those fragments are what start the neurodegeneration, if that makes sense}.  If this research that is being done on rats now can be done on people…well, it would be the first-ever treatment for MJD.

The reason I’m telling you this very private, very personal story is because I’m begging you to pray for Moseby.  Pray for him please.

5 Responses to What I Haven’t Said

  1. Drena January 8, 2013 at 10:52 am #

    So sorry. I had never heard of this disease. Sending love and hope.

  2. Mimi January 8, 2013 at 11:14 am #

    Praying for our special little boy…I ask God several times a day to please, please heal him and I know HE can!!! Moseby is so very precious and it was meant for him to be with our family…I just thank God for Mary Magaret and Moseby daily AND also for their sweet Mommy and Daddy! Until the day I no longer have breath in me, I will ALWAYS be here for ya’ll. I love you forever and always!

  3. cindy r. January 8, 2013 at 7:33 pm #

    Praying for a cure, praying for his health and praying for your family.

  4. Janessa January 9, 2013 at 12:36 am #

    Hi! I am praying for your sweet baby boy! just know that God has a good and perfect plan for your boy! try not to live in the future and be thankful for the day you have! When you said you were mourning the loss of a normal life for your boy, that hit me. I have done the same. You are blessed! With many prayers, janessa

  5. Joyce Hughes January 11, 2013 at 8:08 pm #

    I find myself so very angry that Moseby has this disease. And I know that being angry is so futile and wrong, but it’s how I feel. I am praying that my anger dissipates, and that I can begin to see the blessings in all this. Because I know there are bound to be blessings. God’s hand has been with all of you and Moseby since he was conceived. Much love to all of y’all…

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