Like a Hurricane

Wednesday Haven received her official Autism diagnosis and as prepared as I thought I was for it, I took it so much harder than I thought I would. A couple people asked me, well didn’t you know it was coming? Well Yeah, I did, but it feels like when you know a hurricane is coming, so you prepare yourself but you never know how actually damaging the hurricane will be. You don’t know know the toll it will take on you and your life until the storm is over and you sit down and look at the aftermath. Assess the damage. I had been so busy preparing for it, that I didn’t stop to think how bad it was actually going to hurt, how damaging it would be. I was so prepared for the appointment, had all my ducks in a row, did all my research, knew what to expect with the tests and questions. I had done it all before. I was so prepared for everything, except myself. Our specialist noted how well I was taking it, how prepared I was. I knew it was coming, of course I was fine. I sat there rocking Haven and I was fine. I was fine. Then the panic set in, the shakes. Why was I shaking? I knew it was coming, I should of been fine. I had gone alone and wasn’t okay to drive yet so we went to the cafeteria to grab lunch. I called work to let them know I wasn’t going to be able to make it in. Thats when it hit me, As soon as I said it out loud to a person I knew and trusted I lost it. I started to cry and I couldn’t stop. I cried all day and most of the next. That pain I felt at the beginning of they year was back. The pain where i  have 24/7 tears just waiting for me to let them loose. The lips sealed tight, all consuming, physical aching pain was back. I wasn’t expecting that. I was expecting everything, but that. 

So what’s next? We have quite a long list of orders from the specialist. Havens speech is very far behind. Her ST thinks she may have speech apraxia. She’s measuring at about 12-16 months instead of 28. We’ve been ordered to start additional private Speech therapy, which means another trip to Fort Wayne each week. We will also head to Riley’s soon for an overnight sleep study as they are better equipped to handle a kiddo like my sweet and extra resistant Havey. We will also go for our Genetic Testing As soon as they can get us in, maybe while we are at Riley’s. The Genetic testing will help us to see Havens makeup, whether she has the MTHFR gene mutation(which has been a concern of mine since she’s been under anathesia so many times) and if she carries the Fragile X gene. If she is a Carrier more than likely one of her parents carries it as well. I am very eager for these results and hopefully more answers. There was pages upon pages of new referrals and recommendations we are weeding through but those are the major things. 
As hard as the diagnosis is, it’s the best thing for Haven. Now she will be able to receive all of the services she needs to thrive and grow without me battling toothe and nail with insurance and whoever else. Havens doctors, Matthew, Mia, and myself have no doubts that she will do such big things. With the right services and the support and love of our family and friends she will continue to amaze us and become the perfect person God planned for her to be. We are so lucky to get to love her and be loved by her every day. I am so lucky God gave her to me.

 I ask everyone for prayers, and understanding during this time. Thank you to those that have already reached out to us, you really find who’s there for you during life’s most trying times, Blood is surely no thicker than water.

Happy Halloween to you and yours and God Bless. 


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