The last few years have been very…trying? Although trying doesn’t feel like the right word. Challenging? Whatever the word, it’s been something. In 2015 J was diagnosed autistic. We knew this was coming but hard to hear nonetheless. It was like suffering a death of sorts. Emotionally it felt that way. I have myself 24 hours to grieve what could have been and then moved onto what do we need to do for him. You have to have this attitude to make it through a diagnosis like this. For J, being non verbal and very sensory, we knew we had a long road ahead. Every day it’s own challenges, with great things and not so great things. My job consisted of organizing therapy and making sure the insurance kept it together. They should really pay me to deal with the insurance.
I finally got my routine together with J and A. When they asked if we wanted genetic testing after the diagnosis I said sure. We had no history of anything genetic in our family. Fragile X here we come. To say it was a bit heartbreaking is an understatement. J was just under 3 and A not even a year. To find out I gave my son the mutation that ultimately caused his autism was very crushing. I love him for who he is but I would take the autism away if I could. To make life easier for him. He’s J cause he has autism but he would be J without it to, Just different.
So naturally after J’s genetic testing, I watched A like a hawk. Watching for any sign that she might be following J. She hit every milestone except expressive language. She fell a bit behind so I had her evaluated with early intervention. She qualified for speech and nothing else. J qualified for everything. Big sigh of relief but I followed up with genetics because she was delayed. We had her blood work done and surprise, she also has the full mutation. Well damn! I’m 0-2 in the genetics department. A will need the information as she starts thinking of her own family. At least we know.
E. Baby E. She was a surprise. A wonderful surprise but a surprise. After batting a thousand with fragile x we were decided on no more kids. My husband had the vasectomy scheduled and oops. Baby E is loved. We knew there was a 50/50 chance of fragile x for her too. We still don’t know yet if she has fragile x but she’s our special baby with rare genetic mutation number 2. I mean what the fuck?!? Sorry. But seriously? What are he odds of having to rare genetic mutations? That cause very different but very serious things to children. What are the odds? After finding out about her cf I balled. I spent 24 hours crying off and on. Especially after freaking myself out on google. Never do that. It’s terrifying.
After my 24 hours I decided no more tears. It is what it is and how can I help her. Learning her diagnosis wasn’t as severe helped a great deal. It allowed me to breathe. She has it. There is nothing that can change that. So what do I need to do? I have one child whose specialness is neurological and the other one is medical. Craziness. Sometimes I wonder if I can handle it all. Shuffling all 3 kids from appointment to therapy to appointment. But then I realize I have to. I can’t be sick. I can’t slow down. I have to be there for them for whatever comes up. When I stop everything crashes. I miss having a job. I miss going to school. I miss having the things that were just mine. I miss having time. But those are the things you give up so that your children can thrive. When they’re all in school I’m going back to school. I don’t care if it takes me 10 years I’m going to get my degree and do physical therapy. After seeing J and his physical therapist and seeing wounded soldiers, I think I’d like to help. Working with autistic kids and wounded vets are tepntghings very close to my heart. I think I’d be good at it. It’s my goal. A goal just for me.
So I’ve decided to be 1% selfish. To start taking better care of myself. To do things that make me better, because when I’m better everything is better. To make an effort to spend a little more time 1 on 1 with my husband. To take a few moments for myself. Take better care of my health and try to have a healthier lifestyle. To destress my life.
Because in the end you need things for yourself. You need to have goals separate from your kids. I love my kids but they are not everything that makes me me. They are just the best part.