Now seems like a very appropriate time to point out that my birthday is exactly 1 week and 1 day away! Yes, I will be 39. No, I don't lie about my age or really care what the number is. Yes, I LOVE my birthday! LOVE it! No, that is not sarcasm, I really do love it! There can be absolutely nothing planned (which, would be 100% accurate at this moment as nothing is planned) and I'll still love the day. There is just something about my birthday that always makes me feel good. I believe I will always be that girl who gets excited about her birthday... I hope I am. 8 more days!
I'm glad I'm starting next week off with my birthday on Monday (the 21st) because on Thursday (the 24th), we have Parker's IEP and God knows I will need every ounce of positive energy and good spirits I can find to get through it. Not because Parker's team is horrible and his IEP meetings are the worst ever - because that is not at all the case. He has an incredible team who really believes in and pushes him. But this IEP meeting is more than just an IEP meeting. It's a transition to high school meeting.
I could be wrong but I'm pretty sure this boy who towers over me was just born yesterday. Yes, I am sure that yesterday was May 4th, 1999.
Since Parker's Fragile X diagnosis almost 10 years ago I have faced many "I really can't do this" moments. Yet, they weren't really "I can't do this" moments, they were "I don't want to do this but I know I can" moments. I knew I could. I knew that even when my back was against the wall and I was walking alone into the wind that I could do it. And I did. I paved the way for children in the school district following Parker to walk on. As I made the road, I gained support from family and the school and soon, we paved together.
In my head I have been telling myself that this transition to high school is another "I don't want to but can" moment and I was starting to believe it until his teacher called me to verify a couple things and let me know that by the 24th a decision will be made as to who Parker's teacher will be next year and I fought tears through the entire conversation as we talked - she talked. I stopped and just silently cried and listened. After I hung up, I realized, I'm not in the "I don't want to but can" moment, I'm in an "I can't" moment.
I can't do this. I can't leave the team I love and trust. I can't leave the school where he is surrounded by the most amazing teaching and support staff. I can't send him to the high school. High School. HE WAS JUST BORN YESTERDAY. Did they miss that? Did they overlook that minor detail? Because he's not old enough. He's not ready. He's not.... I'm not.
I'm not ready to do this again. A new school. A new team. A new schedule. A new beginning. A new group to educate. A new group to trust. I can't. I'm not ready.
I talk a lot with his typically developing peers. I know they are scared. I know there parents are scared. I know it's a big change for all of us. I know we are in the same boat. But my job on this boat is a little different. I can't get on the boat and say "sink or swim" because if the boat starts to sink... Parker can't tell me. He can't scream for a life preserver. He can't jump in the row boat and paddle to safety. He can't. My job is to put that invisible life jacket on him that will hold him up no matter how much water that boat takes on (while praying it doesn't take on any). My job is to be certain that the boat is over flowing with life preservers, life jackets and emergency row boats. That each jacket is tested and works, that each row boat has ores, that we test this boat extensively before I ever let him step foot on it.
He's just my baby. Oh my God. He is just my baby. BABY. I had a dream a couple nights ago that I was with Allison and friends swimming and a baby (not mine someone else's) fell into the water and drowned. While I've been racking my brain trying to figure out all of the little things in the dream and piece them together for meaning (which I never do but can't help with this one) it just dawned on me that Parker is my baby and that baby didn't have on a life jacket. Maybe my dream wasn't about Allison at all but about Parker and my need to get a life jacket on him before he drowns. Or maybe it meant absolutely nothing at all and I'm just avoiding the next paragraph where I admit I can...
I can do this. I can send my 13 year old son who was born yesterday and now towers over me to the high school next year with his friends. I don't want to but neither do their parents. And that's not at all a negative reflection on the high school - it's a realistic reflection on all parents not wanting their kids to keep growing up but to hold onto their youth as long as we can.
Parker can do this. I've never let him go anywhere without a life jacket. He isn't always wearing it all buckled up with straps pulled tight, sometimes his hair gets a little wet but he's always had it.
I have a plan. I have a voice, actually 2 - mine and Parker's. I don't want to do this... but I can. And he can.
I'm still going to cry.
To learn more about Fragile X Syndrome please visit the National Fragile X Foundation's website.
*Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of Autism.