I remember the day like it was yesterday. Sitting in a nondescript doctor's office, thinking that it was going to just be a routine checkup for my child. Husband deployed of course. As I watched my child, who on the floor happily playing and stimming away, the doctor quietly hands me a piece of paper. As she gives me what is the lab work done on my child, she is explaining to me that these is the result of the Fragile X testing we had done on my youngest son. It has come back positive. There is a feeling of numbness, that I don't think any parent who, when faced with getting a diagnosis regarding their child, can forget. Everything just goes blank. There was a point,for me anyways, where I could literally feel my heart break. I sat there, not being able to see clearly. Although, this wasn't the first time I had sat in a doctor's office and received a diagnosis for any of my children, but it was the first time where I thought, " What more can this child handle?" and " How much more do I have to do as a parent to make sure he will be ok?" Of course it meant more doctors to see, more specialists to talk to and more time that I need to make for this child. That day I am surprised I was able to drive home without getting into an accident.
It has been one year since that day and what has transpired? The good, the bad and the ugly. To be honest, it has been a bit of a roller coaster. While we have learned to accept this diagnosis as this is part of who my son is, we have also seen some of the challenges he will face growing up with this diagnosis. We have endured testing through out the year from EEGs to Neuro-psych evals, with results that have either been informative to devastating. We have had to re work IEP goals with our school in order to find a way to incorporate what comes along with this diagnosis. Our biggest challenge this year, was dealing with the insurance and medical aspect of having a new diagnosis tacked on the all the other ones. For us, at least, it seems to be an upward battle to get people to see your child as not just a number but a person. Our struggle to get things approved or even recognized by some who are part of this child's life, has been frustrating to say the least. So what do you do? You push through it.
One year after the fact, we have learned how to fight a different battle for our child. I have educated myself more on Fragile X, as I had to for the Autism part of our lives. I made sure that I researched all I could about my son's disorder, so that way, when I come up against a wall I was somewhat prepared for it. Each new doctor or specialist got added to our list, each with different questions that need to be answered. I relied on the support of my family and friends to get me through the days that I didn't think I would be able to make through.
With any diagnosis, the support is essential. Knowing who is going to be there for you and who isn't. Its the people who ask you what you need to help get you through it all, are the ones that are important. Anything from an ear to listen to you vent in frustration to the ones who offer to give you a moment to yourself. In the past year, I have discovered more online resources and support regarding my son's diagnosis. There is something to be said about an online community, we may not know each other personally, but we all know too well just what boat we are rowing in.
So a year after. We have all grown. We have all learned how to take things as they come. One step at a time. We will continue to move forward, the best way we know how. And as each Diagnosis Day Anniversary comes and goes, we will continue to live our lives, grow and prosper. For anyone who is just getting their first diagnosis and is in that state of disbelief, I feel you. I understand you. The first year, will be rough, but in time you will find your groove. You will learn and understand just what it means to have, or have someone you love have a diagnosis that impacts your life. It isn't going to be easy, but know there is a ton of support out there, we are here and we understand.
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