There are Hard Days

I have discovered in the last couple of days, that even though I love the journey we are taking because of Nichole's diagnosis, there are still some days that are hard. Actually, there are days that are very hard.

We are currently in the process of applying for an MR waiver. MR stands for Mental Retardation. That is right, we are basically in the process of applying for a waiver that will label my daughter as mentally retarded for the rest of her life.

Why are we doing that? Because this is the only waiver available in which she can get the services that she is entitled to. If we chose the other waiver for which she would also qualify, we might have to wait for two years! We have heard from some providers that things might change, and if she is not in a waiver soon, she might never get it.

In the "race" of time, there is no waiting list for the MR waiver. Can you believe that? Nobody is in line waiting to be labeled as mentally retarded!


Why is this so hard? Because nothing, nothing, nothing in me wants to give her such a label. I cringe at the thought of that. In order to qualify for this waiver, she has to have a psychological evaluation. This has taken us down the road of case workers, interviews, and developmental charts. Because I want her to qualify, I have basically painted a picture of my daughter that is not accurate, not because I have lied, but because all I have done is talk about all the things she cannot do and the things she has trouble with. Nobody has taken the time to ask about her abilities, but rather her disabilities.

I cannot even type this without crying. I have not only spent the last few days talking about the things that she cannot do, but I have really stressed those out. I have made it clear to everyone I have talked to that she is delayed in all areas of development, so why do they keep calling and asking more questions? What kind of advocate am I? I am passionate about teaching people about the beauty of Down syndrome, about all the wonderful mysteries I have discovered. I am passionate about showing people that the life of a child with Down syndrome has worth, value, and immeasurable meaning. But here I am, painting a stereotype, affirming it, all so that she can get the services that she deserves.

It has been hard on me. As a mother you can only do this so many times before your heart starts to break and you want to call it quits.

My child is NOT retarded! She is perfect! She has so much potential! Leave me alone!

I do not want my child to be called retarded, I hate that word, it is a word that is used flippantly and it hurts, this really hurts and most people don't understand what they are saying when they use it! People use a word that now will be used to describe my daughter in order to make fun of others and point out their flaws.

I hate the word retarded because of how it has been used. I hate it.

And the tears come fast.

Nichole is beautiful, she is smart, and her life has great value!

So here are the things that Nichole CAN do.

She can crawl, fast!
She can babble like no other! yah, yeah, hi, da, ma, pa, ba, bo, la, are some of the sounds she CAN make.
Her receptive language is very good and she follows commands and responds to signs(except for obeying when told "No" then she acts like she has no idea what we are saying)
She has about 15 signs (she does not always sign them, but she does understand them all)
Her social skills are above and beyond.

And there are so many more things she can do. Which makes it so hard to be going through this process. Yesterday was a very hard day. I realized, that other than initially dealing with her diagnosis, this has been the hardest thing I have had to go through with Nichole.

I feel like I am betraying her in some way, giving her a label that is repulsive to me, giving her a word that is sued in such a mocking and disrespectful way. I know this is what I have to do for her, I want her to be taken care of! But it is so hard, so hard for this mom.

I cannot wait for this process to be over with so we can just move on.