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 I do love writing on my blog, even though many posts stay unpublished!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!

Thursday, November 24, 2011

And the journey continues...

A pretty incredible event has happened since my last post. Emma became a big sister. Carter Tate was born on August 22 weighing 7 lbs. 8 oz.  It is amazing how easy he just fits into our family. I feel like he has always been here. He is smiling and cooing. He looks at his big sister with amazement and that he should, Emma is pretty amazing. I can't wait to see them grow and play together.

Emma has been communicating with the help of an IPad. Just the most basic apps have open up this whole new world between the two of us. She is answering questions and communicating her needs for the first time in her life. We will soon start working with more complex applications in hopes of having continued success.

There has been some pretty exciting news on the research front. Clinical trials will be starting soon on an FDA approved drug that reversed some Angelman Syndrome symptoms in mice. We found out this week that another scientist has found a compound that will turn on the maternal UBE3 gene that is silenced in Emma's brain. This would be a potential cure for Angleman Syndrome.

Several AS parents were having a discussion recently about their opinion of a cure and clinical trials. I was pretty surprised to find such a difference in opinions. Since Emma's diagnosis, I have dreamed of a cure. This summer, my dreams and what if's became more realistic. For the first time ever, I had reason to believe that it was possible. I guess I didn't realize that others looked at things differently. These parents, regardless of opinions, are warriors in their own right. They are all fighting a battle. Some are choosing to fight for a life of acceptance for their child despite having Angelman Syndrome. They are facing the future head on knowing the challenges that they will face. Others, are choosing to fight for a cure or treatment for their child. They are letting faith and hope lead the way. One thing that they all share, they want the absolute best for their child.

I don't know what a cure will look like for Emma.  I know that there are risk. Putting a child on a new drug is a scary thing. There is also the chance that my dreams of a cure won't be all that I imagine them to be. What will it be like if these meds don't work. These are all risk I am willing to take. Today, I have hope.


by Emily Dickenson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Saturday, March 5, 2011

But for the Grace of God

I have often wondered when the stares from strangers would go from looks of envy to looks of pity. I think we might be crossing over. I have seen the faces of friends, familiy, and strangers when they see Emma struggle to move. When they see us to all the work in getting her into a stroller, highcair, carseat. I see the look on their faces when I talk to them about AS. I call these the "but for the grace of God" looks. I can almost see some of them thinking, but for the grade of God, my child is healthy. But for the grace of God, my child does not have seizures, can walk,. can talk. I could agree with them. I could come up with an entire list of why they are the lucky ones. What good will that do me or Emma? I can also think of a million reasons of why I can say the same thing. Here are just a few...
But for the grace of God I have a child who has a smile that can light up a room.
But for the grace of God I have a child who knows how to work harder and is tougher than any adult I have ever met.
But for the grace of God, I have a child who has taught me patience.
But for the grace of God, I have a child who finds pleasure in some of the simplest things. Emma loves life. She sees good in everything around her.
But for the grace of God, I have a child who has taught me a new meaning of the word intelligent. There is so much going on in the head of hers. Who cares if it is not the norm of how we define intellegent. She is the smartest two year old I know.

We don't want pity. Emma's life is nothing to feel sorry for. She is going to have a great one. Of course she will have to overcome obstacles that I wish I could take away. It won't be easy and we will shed our share of tears. I have every bit of faith that she will make her stamp on this world. She already has.

Friday, November 26, 2010

              I know that this blog was written to share Emma's journey with AS, but this experience has been such a journey for me as well. It is not all sunshine and roses in my house. I have some days where I am just plain ticked off at what Angelman Syndrome has done to our lives. I think about what Emma would be doing if she did not have AS. I can actually sit and imagine the conversations I would be having with her today if it were not for this diagnosis. I can honestly say that I despise Angelman Syndrome. This is where the guilt comes in... how can I despise something that is such a big part of my daughter? I recently told a dear friend in the AS community that we would "get through this". We seem to have our bad days at different times, which works great because I know I have someone to pick me back up. After making this statement, I started to think. Emma's life should not be something that I have to "get through". I need to enjoy every moment of the life we have together because I'm just not going to get another.
                This has always been my favorite time of year. We have had a few losses in the family around the holidays in the past several years. Although I think of these people often, I try to not let it damper the holiday spirit. Yesterday I woke up and immediately thought about how fast we were approaching the one year mark to Emma's diagnosis. I thought about how our lives had changed since our last Thanksgiving together. Do I really want to spend every holiday from now on a bitter and angry person because Emma can't tell me with her words what she like on her Thanksgiving plate or what she wants Santa to bring her? No way, I will not let AS sabotage my time with her.
             I know that there will be some rough days ahead. I also know that we will get through them. Emma is so happy and healthy. Our journey will be a different one than we had planned but it will still be a great one. My goal from here on out: I will no longer let my worry over the future, rob me of the days I have with her now.

Friday, November 5, 2010

A Little Late....

Wow! So much has been going on. I guess I have been a little neglectful to this blog. We have sailed right through summer and now I am hearing Christmas songs in stores. I will try to catch everyone up but I am sure I will leave some things out. We had a great summer. I enjoyed every minute I got to spend with our little girl. We had a couple of great beach trips thrown in. We got so many great pictures of Emma enjoying her wagon on the beach. I hope that next year we have pictures of her running on the beach. We shall see! The Anat Baniel Therapy has been going great. I have noticed so many differences. Emma was never really transitioning into and out of sitting until we started this therapy. Now I am happy to announce that the baby proofing has begun! Emma is pulling up, cruising furniture, and can beat me in an army crawl across the room. Still not putting her hands down to crawl but she gets where she needs to go. She also is doing well pushing her walker around the house.

We have continued to work on the Alphabet Therapy with Emma. She really has done well with that. I think I mentioned in an earlier post that she has learned to identify her colors. We are working on shapes now. I am in awe at our sweet girl. She knows so much! She is showing me everyday how much she really does understand. How incredibly frustrating it must be to understand what people are saying, to have your own thoughts and feelings, but have a body that does not cooperate in sharing them. We will go in January to see a specialist who will advise us into which augmentative communication device will be best for Emma. Until then, we continue to work on using picture cards for communication.

Well our first Fall Fundraiser to benefit Angelman Syndrome, was held last weekend. It was so much fun and I am extremely happy that we things went so smoothly. We raised almost 3,000 dollars for research. A huge thank you to our wonderful friends and family that worked so hard to help the day become a success and to everyone that joined us for our first festival. We would never have been able to do it without you! We love you all very much!
We are going to take a little fundraising break before we start planning for our golf tournament in the spring.

Brian, Emma, and I are headed to Nashville this week. We have enrolled Emma in the Natural History Project at Vanderbilt University. She will see some of the top neurologists and geneticists associated with Angelman Syndrome. I am looking forward to spending some much needed time with my family. I hope that one day we will make this trip to start Emma in some sort of clinical trial for a treatment for AS. I think about this every day and will never give up hope that the day will come. One of our many dreams for Emma is that she will one day be able to say the many things on her mind including a thank you to all that have supported her.

Tuesday, July 20, 2010

New Friends

We took Emma to Nashville in June for an Alphabet Therapy Workshop. We took away a lot of information that will help us teach Emma. The workshop was very inspiring and made me excited of the things to come for our girl. Emma leaned very quickly that it was work. We have been trying to do a session a day at home. She has already learned four colors. We are very proud of her. The most challenging part is getting Emma to cooperate. She is one stubborn little girl!
The most exciting part of our trip was the opportunity we had to connect with other angel families. It is strange how connected you feel to people you have never met. I wanted to just reach out and hug them all. We only had a little time to spend together but the relationships formed are like no other. We will forever be connected. I look forward to watching our children grow together.