How did we get here.....

This is my first ever blog! I have to admit it is kind of scary putting yourself out there but anyway here goes nothing.
This is how our Fragile X story begins. I had my son Nathan 13yrs ago. He was perfect. Cranky but perfect. We didn't suspect anything was wrong until he was about a year old. Then his pediatrician sent me and my ex to a neurologist, his response was "Oh, he's just a boy he will grow out of it don't worry." Ummmmmm, ok. Another year goes by and he makes progress so we assume the doc was right. Somewhere around that time we decided to try and have miss Serenity. After she was born and Nathan was about 4 we went into the pediatrician's office with a list and demanded answers. It was then she finally agreed that there was more going on. About 8 weeks later we found out that Nathan had the full FXS mutation. Talk about a punch to the gut. I'm a control freak I will admit it. I do not like being blindsided and this one got me. I grieved for a long time. I use the word grieved because I can't think of a better word for what I felt at the time. We moved on, got therapy, special schooling and he improved. Unfortunately my marriage did not. After Nathan was diagnosed and after over a year and a half of trying we split. We had different ideas on how to help him and how to raise him I could go on and on. Ok so your wondering thats 2 kids so far and wait on facebook she's married and why the heck would she have more kids if she knew that there could be something wrong with them. Well yes I am married, I met my husband 9yrs ago and we have been married 7yrs. We have 2 children together and that makes 4. Now to answer the question I get asked a lot, why did I have more? Well it wasn't an easy decision. I always wanted lots of kids because I think I am crazy (I know I am crazy). Nathan was higher functioning so after talking a lot we thought we could handle 1 more, then came Haley. She was a little cranky as a baby but nothing like Nathan (that kid never slept ever). She wasn't behind in anything really the doctors told us she was fine. So me thinking 1 high functioning boy with FXS 2 girls who are fine lets play the odds again. (me and my big mouth) When Haley was 6 months old we tried for Ty. (yes they are close together and yes I know thats crazy too) This is where the story goes a little haywire. When Haley was 10 months old we started to notice a few things and I can't remember exactly what they were because my memory is shot now. I talked with Donnie and the doc and they thought I was looking for things but I insisted she be tested (should have done that from the start lesson learned). Several weeks later the test came back with the full mutation and another punch in my gut. What sucked more is I had found out a couple months before I was pregnant with Ty. I decided then Ty would be tested when he was born period and I would not tempt fate a 5th time. Needless to say when Ty was born his test also showed he had the full FXS mutation as well. I have to say that I wasn't surprised or I was numb by this point. Now fast forward to present day. Nathan is 13, Serenity is 10, Haley is 7 and Ty is 6. I never in a million years thought that I would have had to deal with the things I have had to deal with. What breaks my heart is the fact that I have to watch my babies go through it too and I can't make it better. I can only do damage control. Everyday is like the movie Groundhog Day where its the same thing over and over and over just to keep their routine the same so there are no meltdowns and they don't hurt themselves. Its exhausting both physically and mentally. They are just so darn cute though and when they come running up and throw their arms around me for no reason or give me a kiss out of the blue it makes everything worth it. I have no idea how well I did for my first blog entry but this is how we got here...