Wednesday, November 21, 2012

Her Diagnosis

Today's gift is her diagnosis.

You may be wondering...how is her diagnosis a gift?

Not knowing what is causing your child to be "atypical" is worse than knowing.  Our daughter started showing signs something wasn't right at the age of 18 months.  It was primarily in the area of speech at first and then progressed to fine and gross motor skills along with hand wringing.

In a 4 1/2 year time period she also experienced other issues such as pulling out her own hair, head butting, screaming fits, constipation issues, serious sleep issues, and behaviors started.

We didn't know what was going on and why she was experiencing these issues...all of them.  We went from doctor to doctor crossing state lines.  We went from specialist to specialist crossing state lines.  She had test after test done to try and find an answer.

She had the Rett Syndrome test performed twice and both times it came back with a negative result.

We just wanted an answer so we could move forward.  By knowing what our daughter was facing we would not only understand her better, but would be able to understand why she was experiencing the issues she was.  All we wanted was to help her and all we felt was helpless.

However, six years ago today we received our answer.  Six years ago today the blood test for Rett Syndrome came back for the third time.  This time it was positive (the third test was sent to a different lab in Texas where it picks up all mutations, mild and severe).  Today is diagnosis day for our family.

Today six years ago our world for our daughter was turned upside down.  The next day was Thanksgiving and it was so hard for us to celebrate and be thankful with her diagnosis.  But we were...we were for her, for her sister, for the rest of our family and for ourselves.

While we secretly were praying nothing would come back positive, we were so thankful we had an answer and could move forward.

I'm not going to lie and say its been easy since "D Day".  Far from it.  But keeping things in perspective, it hasn't been horrible either.

Our daughter has taught us so much about her, about us and about life.  In a time when we were feeling extremely grey, we were given the news a week after her diagnosis we would be having a third child. At a time when we needed something to brighten our days, weeks and months ahead, we were blessed with the color blue...blue for a baby boy who would be part of our family in nine months.

God has a plan for all of us.  While his plan for us was to give us a child with special needs who would require extra care, he also blessed us with two healthy children.  I just can't help but think there was "planning" behind his timing...his timing of her diagnosis and us finding out we would be welcoming a third child into our family.

While I would give anything for her to not have a "D Day", the gifts she gives to me...us...daily, are life changing, and truly makes you appreciate every little and big thing differently.

So many families never get a diagnosis or the wrong diagnosis and I can not imagine what it would be like to still be in the "unknown".  I would always rather know, than not know.

We have come so far in six years and I can't wait to see what she is capable of in six more!  But more than anything I hope in six years when she is 17 we will be celebrating a cure for her and all her Rett sisters.  Instead of "D Day" being on our radar each year, it will be replaced by "HER Day" the day we Helped End Rett and the day she got her life back!

Here is one quote for today and a little story....

I prayed for this child and the Lord has granted what I asked of him- 1 Samuel 1:27


Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his
instruments of propagation with great care and deliberation. As He
observes, He instructs His angels to make notes in a giant ledger.

"This 
one gets a daughter. The Patron saint will be Cecelia"

"This one gets twins. The Patron saint will be Matthew"


"This one gets a son. The Patron saint.....give her Gerard. He's used to
profanity"


Finally He passes a name to an angel and smiles. "Give her a disabled
child".
The angel is curious. "Why this one God? She's so happy"


"Exactly," smiles God. "Could I give a disabled child to a mother who
does not know laughter? That would be cruel!"


"But has she patience?" asks the angel.


"I don't want her to have too much patience or she will drown in a sea
of sorrow and despair. Once the shock and resentment wears off, she'll
handle it. I watched her today, she has that feeling of self and
independence that is so necessary in a mother. You see, the child I'm
going to give her has her own world. She has to make her live in her
world and that's not going to be easy."


"But Lord, I don't think she even believes in you"


God smiles, "No matter, I can fix that. This one is perfect - she has just
enough selfishness"


The angel gasps - "Selfishness? is that a virtue?"


God nods. "If she can't separate herself from the child occasionally she
won't survive. Yes here is a woman whom I will bless with a child less
than perfect. She doesn't realize it yet, but she is to be envied. She will
never take for granted a 'spoken word'. She will never consider any
'step' ordinary. When her child says "Momma" for the first time she will
be present at a miracle and will know it. I will permit her to see clearly
the things I see...ignorance, cruelty and prejudice...and allow her to rise
above them. She will never be alone. I will be at her side every minute
of every day of her life because she is doing my work as surely as if she
is here by my side"


"And what about her Patron saint?" asks the angel, his pen poised in
midair. 





God smiles ……………"A mirror will suffice"




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