A Name is Very Important

Take 2 of this.  I lost the other saved draft.  Add in it has been SUPER busy.

When my son, Noah, was diagnosed with asthma, it did not take 6 years.  It did not take long at all.  We were in the ER with him.  He was coughing for months & his pediatrician put him on asthma medication (nebulizer).  He was on different meds, but the coughing was not going away & it got worse.  We knew the diagnosis was coming.  Diseases like asthma, diabetes, arthritis does not take years to diagnosis.  

With Ashleigh's diagnosis, it took SIX LONG YEARS.  Yes, you read that correctly.  In the beginning with Ashleigh, we had the diagnosis of developmental delays.  That general diagnosis is vague. In 2008, Ash was given the diagnosis of Spastic Paraparesis.  I think I was in denial with this diagnosis.  I did not want this diagnosis.  The more I read the more afraid I become.  In Ashleigh's website (link below) you will see my talking about CP.  That is in my denial state.  I am now okay with the diagnosis.  Spastic Paraparesis is hereditary. I am afraid of Ashleigh's future, but we now know what Ashleigh has.  In 2006, Ash was diagnosis with Benign Joint Hypermobility Syndrome on top of the Spastic Paraparesis.  To read more about the entire story about Ash:
Ashleigh's Site

The thing that made me so mad was people comparing her to kids her own age. Ash is not like kids her own age.  She has never been like kids her own age.  

The reason for this blog post is because the last week I read Anne's blog, What's in a name?  Her daughter, Gracie, does not have a diagnosis.  Anne is right.  Each new school year the kids gets new teachers, the moms start new things.  Noah has a new soccer coach with new team mates (before he was on the same team with the same coach for 2 or 3 seasons.)  How do we say explain about our special needs child?  

Reading Anne's blog post reminded me of the time when we did not have a diagnosis for Ashleigh.  The Unknown.  All the what if questions.  When Ash was little, we did not know if she would walk, talk, etc, but she did all those.  Ash had to be taught how to walk, climb, etc.  When you don't know yourself, how do you explain it?   If we had the accurate diagnosis in the beginning, we could be getting Ashleigh better help, better answers for us.  

Before the diagnosis, Ashleigh started having major pain in her legs (2006 this started).  No doctor, or nurse wanted to hear it.  They said it was growing pains.  I did not believe this.  It was more. Ash would scream.  I think if we had a diagnosis then we would had been receiving help right away instead of waiting & fighting.  It was hard to explain to people what was wrong with Ashleigh.  

A name is very important especially when it comes to an illness of one of your children.  So, if you are one of those that ask us moms of a special needs kids, listen to what we have to say.  Don't be critical with the information we give you.  Remember it could be hard for us to explain the unknown.  Be supportive.  Think what if this was my child.

I hope & pray some day really soon that Anne gets a diagnosis for Gracie.  

I am working on 3 different blog posts.  This past weekend I made Noah's month.  More to come!
Melissa