The fall is here. It has always been my favorite time of year. Summer has ended and I have to say I am breathing a sigh of relief. This summer did not turn out quite the way I planned. I had images of Bella and Zackary running around the yard together, exploring the beach and reporting back with what they found. Bella leading the way with Zackary trying to keep up.
But it is ok.. because those images were replaced with what are now my memories of Summer 2011. Countless beach days with our FAMILY. The meaning of that word has always held great importance to me. Family is where you come from, constant, unchangeable. Since June 21, 2011 however I realize that family is all of that but it is much more as well, it expands beyond your blood, it is more than lineage or heritage. Family is pure love and support. Our family has grown this summer, ten fold.
For those who do not know it, October is Rett Syndrome Awareness month! So take out your purple and wear it proud!! Spread the word to a friend, encourage people to find out what Rett Syndrome is and how they can help the fight!
Since I have last posted we have started to reach out to other Rett families and support resources. It took me some time, but I was finally ready. I really needed to connect with other Rett families. When Bella was first diagnosed there was just an immediate sense of isolation, of life never being the same and that everything we knew had changed. Reaching out to those who have been there before us has brought a comfort that I cannot describe.
I met 9 other Rett Moms this month at a dinner. All 10 of us varied in age and our daughters varied in age and severity. Now you might think a dinner with 10 moms of daughters with a pretty devastating neurological disorder would be about as much fun as root canal..actually it was the opposite. It was WONDERFUL. You could immediately feel the love and bond that ties us all together.. we laughed and joked, in spite of ourselves and this Rett world we live in. What I took away was these women, most of whom have been on this road for the better of 10 years, still laugh, still live life and I cannot tell you how hopeful that felt to me.
Now for a Bella update...which is always the most important part of this blog of course... day after day Bella is just the happiest, most beautiful little girl in the world. Her smiles are endless and her giggles just keep the sun in the sky.
Bella is always on the move. I would say that is the biggest progress I can report. She now will rise up on her knees without the support of the couch or the table. When she is laying on her back on the floor and I go to lift her up she will actually put her feet down so that instead of me picking her up, she pulls to stand. She is getting stronger I can actually feel it. She hasn't started "cruising" yet. So although she will stand against the couch or coffee table she doesn't take steps around it. Slow and steady...
Bella LOVES her Kid Walk. We actually took it with us down to Bonnet Shores two weekends ago so that while we all watched the football game, she could have some mobility and independence, like Zackary. I will tell you, that took some deep breathes as it was the first time we took Bella out in public in her Kid Walk. I think Jeff and I went into immediate protective mode.. fear set in that people would somehow look at Bella in a negative, hurtful way. But to our most pleasant surprise..it was the opposite.. strangers just smiled at her and encouraged her to keep moving. And Miss Bella stole the show.. and a bunch of hearts along the way, of that I am sure.
The smile on her face was amazing. She was just so proud of herself being able to move around and that took all my fears away. I was filled with a sense of pride and found myself saying "that's MY girl". I felt that others should somehow be envious of me. Because that smile means that much, it is that powerful that I actually feel bad for those who don't feel it like I do.
On the medical front.. Bella was finally seen by the gastro doctor and was put on Previcid for her acid reflux. We explained our concern over her coughing and gagging and the doctor was hopeful that the acid reflux medicine would calm that down. Unfortunately Bella has to do a "Swallow Test" It is a modified barium test where she has to drink liquids of different thinkness to ensure that she is not aspirating any of her food/drinks. I need this test to be over and the results good..because when they start talking about "other methods of feeding" should she be aspirating, well let's just say I can't go there.
Bella's sleep still remains unpredictable but we have had many good nights in a row and that is such a relief. Her weighted blanket arrived tonight. For those of you who have never heard of a weighted blanket (geez where have you been??? LOL!) it is a soft cozy blanket filled with beans that weighs about four pounds. Apparently, the little bit of weight in the blanket, when put over someone with sensory integration issues, like Bella, it sends a signal to the brain to calm the body! Now of course I used it tonight and I know it could be a fluke, but Bella fell asleep QUICKLY and has been out like a light!! Got my fingers crossed on that one.
Bella's speech seems to be the most elusive. Gosh do I long to hear her voice. I ache to hear her mis-pronounce words like toddlers do. I just want to hear what she has to say. I look into her eyes all the time and I just feel that there is so much in there that she wants to say. Sometimes I just get tired of being the one doing all the talking. I know, hard to believe.
Bella and I do communicate though. Lately I feel this closeness to my little girl that I can't explain. Sometimes she just reaches over and pats me with her little hand, just at the right time, when I haven't said anything.. yet somehow knowing how much I needed that little pat. She laughs when I do our songs or our inside jokes. She is so smart. So unbelievably smart.
Tomorrow we go to the Augumentative Speech Department of Children's Hospital. Bella will be evaluated and we will have recommendations on what kind of communication devices or therapies are best suited for her. I am anxious for this as I just feel lost on this front. I know how to support her to walk (hold her hands, help her up) yet its very hard to figure out what is best to help her communicate. I just want to unlock the door..find the key and unlock the door that is holding my daughter prisoner.
So as one season ends, another one begins..kind of like the phases of Bella Kai's journey. She just keeps keeping on.. her endurance and strength are way beyond her two years. And we keep hoping and praying that before the end of another season we are that much closer to the cure.
