Fragile X, Autism Spectrum issues, PDD-NOS....oh how I wish I could say I only heard about those things. My son has PDD-NOS. He is going to be tested for Fragile X syndrome. I am crossing my fingers that this test will come back as negative. He does have some of the features. I wonder how many parents out there know what it feels like to be here, not knowing. I would rather not know I think, because a diagnosis of Fragile X may take away my hope.
I have two boys and one girl. Both of my boys have issues. Davy's, I wrote about the other day.
Hayden's...well that is another story.
We sat in the doctor’s office yesterday. She asked question after question. He made no eye contact. He fidgeted nervously in the chair. He acted "Autistic". Nothing is worse than seeing your child disappear in front of your eyes. Nothing is worse than knowing that you might do everything right and that child still might not have a future. How do you explain this to other people? I don't think you can. They can try to empathize. This walk sucks.
Hayden was originally diagnosed at age 2. He is now 11. He has always had issues. Hayden is loving, kind, smart, and funny. He is sweet, thoughtful and fair. He does not see the bad in people. He is good. He works harder than any child I have met. He is a gift. I treasure him. I love him. Every day is a day we try to teach him how to be as normal as possible. Hayden is special. Not "special", but truly a special kid who fills us with love.
Hayden is high functioning. I cannot imagine what it must feel like to have a low functioning child. I want to tell other moms who deal with these issues, you are wonderful people. This is hard.
It is different with David. He has food allergies. I cannot do anything about that, except watch his diet and try to keep him safe.
Hayden, we can teach him. He has learned so much more than anyone ever thought possible. Hayden is a character. He can do this. If he doesn't, he will not have the life he dreams of... My job is to give him the tools.
Dear Hayden,
If I can do anything with this life, I will give you the tools to have a job and a chance for a wife. I would give you all that I had, just so you would not have to go through this life being sad. I will help you heal. I would give up everything I am, to help you become a man. The most important thing that I want you to know.... is that I believe in you. You can and do anything you set your mind too. You are perfect just the way you are. You can and will go far.
-mom
P.S. I love you
I am grateful for this life, but I am going to allow myself to cry today. Perhaps for just five minutes. Then, I will get back on my feet and move forward creating a new plan of action. We have until he is 16 years old to get this right. Then...we must start planning transitioning into adult life. 4 1/2 years... that is not a lot of time.
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