Since the new title of the blog is Learning How to Bend... I thought an appropriate post would be about what I am learning along the way.
Life isn't always what you think it should be. Three years ago I thought that this year I would be signing our little girl up for her ballet class. I never would have imagined that we would be ordering her first wheelchair and walker. Three years ago, I imagined the questions she would ask me. The conversations we would have. I never imagined that we would be searching for the best communication app for her Ipad.
Accepting what I can't change. This is a tuff one for me. I still struggle with emotions when I see little girls Emma's age or younger doing so much! The differences are so apparent now. I remember the first time these feelings hit me. We were on the beach two summers ago and a little girl Emma's age was walking on the beach with her mom and grandmother. She came right up to us and had a conversation with me. It took everything I had not to run into the house and cry. Birthday parties, family gatherings, weddings, etc. are all just a little bit harder now. I can't help but to think, why Emma?
I know that learning is a lifelong process. I also know that even though it gets easier, these moments are still going to sneak up on me. It will be how I learn to handle them.
Learning who I can turn to on the darkest of days. I think it may be easier for them to see us at our best. It is easier for them to go home and shut their door and forget about Angelman Syndrome for awhile. Maybe it is that I come across strong and that I don't need the help, the advice, the shoulder to cry on. I know that I can count on my husband. We make a pretty good team most of the time ( with the exception of the sleepless nights... he can sleep through anything). I have also formed some unbelievable friendships that I will have for the rest of my life with other special need moms. I know they are only a phone call away when I need them the most.
Push past the worry and the fear. Anyone that knows me well, knows that I worry about everything. Try adding a child with seizures who will need life long care to the mix. I don't know if I am learning to push past the fear or just learning to live with it. I think the top of my concerns is who will take care of Emma if something happens to us. It is a terrible feeling knowing that you don't know who will fight for your child. Who will care for her for the rest of her life. If I die, will she feel scared and alone? I can't constantly live this way. When the feelings creep up, I try to push past them, enjoying every moment that I have.
I am tougher than I thought.
The shock and hurt of having a special needs child never really goes away. It is a hurt that I can't explain, the pain does get easier. I am so much more aware of the comments of others. I hear some pretty hurtful ones. I know that these people (some even friends/ family) would never mean to hurt me. They are just unaware. They aren't living this life.
There are these moments that sneak up on you. They feel like a knife is ripping open those wounds that are starting to heal. What I am learning? These moments are quick. I am learning how to have a good cry, knowing that is okay, and then moving on.
I am learning all of these things from the greatest teacher I will ever meet. She is about 34 inches tall and weighs 30 pounds soaking wet. She teaches patience, kindess, love, virtue, bravery without saying a word. I have learned that defines incredible!