Like most 9 year old’s, one of Anna Cate's favorite movies she loves to watch is High School Musical, you name the number; one, two or three, she likes them all. I only thought it was appropriate to base today's blog on one of the main songs from HSM, “We’re all in this together”. Listen to the words in this one verse:
“Everyone is special in their own way
We make each other strong
Were not the same
Were different in a good way
Together's where we belong”
Raising children is difficult enough, but raising a child with special differences is extra challenging. It takes a team working together to create the type of environment Anna Cate needs in and out of school to succeed. At school Anna Cate's team consists of six people on a daily basis and nine on a weekly basis. Anna Cate needs constant attention throughout the day to help her from daily activities of living to school work. Her school team help her with occupational therapies, speech and language therapies, to coordinating how to adapt the regular second grade curriculum to a level she can understand and everything in between.
Anna Cate not only receives therapies 3x a week in school, but also 3x a week outside of school, with her physical therapist, another speech and language pathologist and her aquatic therapist, yes therapy in the pool…which is her favorite by the way! She doesn’t realize she is actually working while having a fun time! It is so important that the therapist or teachers working with Anna Cate (or any child) must believe in her. She knows! We are very blessed that the confidence of all 12 (yes, I did say 12) professionals who work with Anna Cate on a weekly basis, is as high as it is. They know she can do it, so they push her and Anna Cate let’s them. She wants to do just as her peers and you can see how hard she is working. Little things like drinking from a cup that we all take for granted, took months for Katie to learn-not because she “couldn’t”, but because her “apraxia” wouldn’t let her. We were very persistent and encouraged her with repetition, repetition, repetition and she got it!
Anna Cate's second team that is “all in this together” is of course her support at home. But please know that her support at home, goes way beyond me and Will. If we didn’t have the amazing support from our families, I honestly don’t know how we would do what we do daily. My parents help out tremendously and then some….whether it is driving Anna Cate to therapies, Betsie to dance, picking Eli up from school, making a dinner for us one night, spend the night so we can get one night of decent, uninterrupted sleep, driving out of state to take Anna Cate to her doctors, you name it- they are there! My mother-in-law comes over almost every night to help me get through the making dinner, feeding dinner, bath time routine…you never know what the day is going to hold, and I want to make sure we try to stay on our routine as much as possible.
When there is someone in your family who has special differences everyone’s perspective of life changes. Betsie, our 6 year old, and Eli our 3 year old, are incredible siblings for Anna Cate. They are honestly the best gift we could have ever given to Anna Cate.
Below is what Betsie read at our event in November. I asked Betsie some questions and then she answered while I wrote. These are her words 100%! All I did was type it up in a big font with big spaces for her to read.
Hi, my name is Betsie and I am Anna Cate’s 6 year old sister. I am going to tell you what it is like having a sister with Rett syndrome, what I don’t like about Rett syndrome, and what I love to do with my sister.
Rett syndrome is not fair. Rett syndrome has robbed my sister of her voice. Anna Cate has some words, but she can not talk like me. Pretend that her whole class had to do a test and Amy was not with her and they did not know she had special needs. Then when they talk to her she would not answer.
Because my sister can not talk she gets frustrated very easily. When she gets really frustrated she gets fiesty. I do not like it when she gets fiesty because she hits her head really hard and she gets bumps on her forehead.
I also do not like that she can not answer me when I ask her a question. So I have to give her choices with my hands and ask her to point to the right answer.
Because Anna Cate has Rett syndrome, it makes fun times hard for her. Like, at Easter when we have Easter Egg Hunts she does not get that many eggs in her basket because she can not run fast and spot the eggs hiding as fast as I can. So I have to give some to her to make our baskets even. It does not matter though how much I have because she has Rett syndrome.
And when she is sick it is hard for us to know since she can not tell us. Sometimes we really do not know until she has thrown up, that she is sick.
I do not like Rett syndrome because:
I wish my big sister could do the things other big sisters do with their little sisters
I wish Anna Cate could go down the slide with me, but because she gets nervous easily she does not like to do this
She can not ride her bike with me and take me out for a walk
All my friends sisters can do this and I wish mine could too.
But with all this, I love my sister and we have fun together. I love to play ball with her. She has a great drop kick.
Color with her when she is in the right mood and does not throw the crayons.
Swing with her, she loves to swing.
Sleep with her sometimes when we have guests come to visit…like tonight!
Swim with her…she is a little fish in the water.
And play teacher with her school work. She loves to learn and I love to help her learn.
Please help me to get the chance to have a normal relationship with my big sister one day, by being a hero tonight. Remember, we are all in this together.
Anna Cate is a blessing to us all and she teaches us all daily on the power of believing! Anna Cate, we do believe and we are with you every step of the way!
wow.
ReplyDeleteThis is one of the most amazing, sincere things I have ever read.
Thank you for sharing this with us. Seems to me you have TWO angels!