Thursday, July 12, 2012

I realize this blog is seriously lacking in pictures. I had bought a domain from Google in order to start a website. I wanted to post videos, pictures, links to AS websites, etc. Truth is, there is no time. I try to keep in touch with families via Facebook and my new obsession..Pintrest. I try to get up early, stay up a little later, and squeeze in five minutes every now in then when the kiddos are playing nicely. Finding the time to stay on top of a website seems a little out of reach at the moment. I do love writing on my blog, even though many posts stay unpublished!

We just returned from the spending a week at the beach with family. It was a tough week. Emma has become very unsettled when away from home. We spent many nights in our vehicle listening to music because it was the only thing that calmed her. Brian and I love our time at the beach. We have always been so excited to share these times with our kids. It scares me to think that vacations won't happen as often because Emma is so unhappy. I don't want Angelman Syndrome to take that part of our life also. Emma woke screaming one night at about 2 a.m. I did not want to wake everyone in the house, so we snuck out to the truck. I was exhausted because I had decided to stay up a little later after I put the kids in bed. I was drained physically and emotinally. Everything outside was so dark and still. I felt so alone. I had a little pitty party after putting in a DVD for Emma. We did get to watch the sun come up over the ocean, so there is something! When I have a night like that, I like to do something challanging the next day. Feeling so hopeless the night before, I wanted to do something that just felt right. Something that would be typical yet still provide a challange. Something that would let me know that I could do this, that everything would be ok. I fed Emma a quick breakfast and we headed out, just her and I. We shopped, without putting Emma in the stoller. I made her push behind the stroller. I let her cruise the aisles, let her push the buggy though Marshalls. She seemed so typical. Mom and daughter shopping trip. We then went to luch by ourselves.  I talked to her, she smiled back. It was a great day. I felt recharged and ready to take on the rest of the week.

Sunday, June 17, 2012

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!