Somebody once told me that parenting is the art of letting go. It could have been my dad. And I thought about it in terms of my family. Three typically developing kids going through the normal stages of life. I'm not particularly good at letting go or facing change but as we started this parenting journey, I was sure I could handle anything.
When Ava was born I pretty much kept her all to myself. Yes, we had some rough new born screaming days when I gladly handed her off to somebody else but for the most part we spent our days (and nights) together. I loved being home with her. I loved watching her grow and develop her little personality. I loved experiencing life through her eyes. The night I went into labor with Emmy, I went into Ava's room and watched her sleep for a little while. I cried because in a weird way I was letting go. She was going to become a big sister and although I knew that was such a great gift, it was going to change things. This saddness was fleeting and quickly turned to excitement when our sweet Emmy arrived!
The first year of Emelia's life was such a wonderful time. She was an easy going baby and fit perfectly into our family. I felt so blessed to have two healthy girls. Life could not have gotten any better. And in that first year I pretty much kept Emmy all to myself. I loved everything about her. I nursed her, held her, giggled with her and thought about her future. I watched Ava love her and was so overjoyed that they would have each other.
After about a year, Ava at 3 1/2 was really ready to venture out to preschool twice a week. Yes, I had to let go a little but the girl was ready to go! I knew I would keep Emmy home with me the extra year because her birthday was late August. She wouldn't start preschool until she was already 4. The thought of all that time to watch my Em develop, to take her to library story time, to just be her mommy brought me such joy.
It was around the same time we began to worry about Emmy's development. She was a year and hadn't started trying to crawl or pull up on things. We brought up our concerns to the pediatrician and she suggested having Early Intervention come to our house to do an evaluation. Wow, that was only the beginning. I wasn't thrilled about having therapists come to our house to work with Em but she needed help and I didn't know how to help her. I watched as our PT and OT tried to get her to do things she had such a hard time doing. I watched her scream through so many sessions. I wanted to scoop her up, tell the therapists to leave, and keep her all to myself. But I didn't. I kept up the therapy sessions and worked with her EVERYDAY to get her moving. When she finally started walking at 26 months I could not have been prouder! She had worked so hard and I was confident she would only progress from there.
The therapy continued and at least three times a week I had to let her go. She wasn't ready and I wasn't either but we didn't really have a choice. I know this sounds weird but I would get her from therapy sessions and for the rest of the day she smelled like the therapists perfum. I HATED this. I didn't want this therapist handling her. It should be me. Things shouldn't be this hard for her.
And as she neared three and we received the Rett diagnosis I had to completly let go. She needed so much therapy and had aged out of the Early Intervention program. She would now receive her therapy at preschool. The preschool I wasn't ready to send her to. I had to watch her lose her speech, her ability to flip through her beloved books and her ability to play with her toys. I had to let go of what I thought her future might hold. This letting go has been the most painful so far.
I have had to open my hands, release my tight grip and trust in God's plan for her life. Whatever that plan may be, I have to find a way to make peace. And in a way letting go of the worries, of the future of the what-ifs has been a good thing. I am simply UNABLE to think beyond the near future. If I do, I will drive myself insane. What if she starts having seizures? What if one day she isn't able to walk? What if one day she never wakes up? Erase it all. Focus on today and find a way to HOLD ON. Hold on to the idea that one day there will be a treatment. One day there will be a cure. One day I will hear what she has to say!
I've realized this parenting thing is truly an art. Just when you think you've got the hang of it, you have to slowly let go...of all the control you THOUGHT you had. You have to open yourself up to whatever life has in store and make peace.