Wednesday, July 29, 2015

But on the other hand...

This is a sequel to my last post, "The Hunch". The fear of the unknown can sometimes be so overwhelming, and long-lasting that it really gets the better of me, and I hate that! I hate it! I am the boss of me, not fear. So after posting that drag of a post, I then suddenly thought, "But what about all of the GREAT things that have happened in the past three years?" Yes, things have been taken  from Lu, but we can't let all of that overshadow the good in her life and that she has accomplished, learned, and experienced.

As I've mentioned many times, Lucy can communicate with us! This is huge considering the symptoms of Rett Syndrome and how hard it tries to trap her in her body.  So even on bad days full of seizures and anxiety, she can still talk to us. She has learned work-arounds for her own body and all that it tries to throw at her so she can still be heard. Here's a couple of awesome things she has said recently:

And then one day she said this which was beyond awesome:

And she's made great friends over the past three years. Just this past Friday her buddies Miles, Isaac, and Chase came over for lunch and swimming and Lu asked me this at breakfast before they came:

This summer she's been doing a lot of swimming with more independence than she's ever had and she loves it! And I love it for her!

Yesterday, after watering her garden and swinging on her swing set she walked this far, from her swing to her wheelchair. She still needs quite a bit of support, but her legs are taking amazing steps forward as we practice and practice each day:

Lu and I work on reading and literacy every day also. She knows all of the things that kindergarteners should know, for the most part. She loves to learn and we do our best to fill her brain with whatever interests her. Right now she and her daddy are reading the children's book series by Stephen and Lucy Hawking about outer space and she loves it! Her and I are working on a collage of birds we've seen at the feeders and she's been in charge of using her special scissors to cut out the pictures. 

Her love of art continues:

She got to be a flower girl in her Aunt Ashlee's wedding:

And we are surrounded by family and friends that love and care for us. It can be hard waiting to see what Rett Syndrome will throw at Lu next, but I need to remind myself to always be on the lookout for what amazing things might also happen next. Who might Lu meet? What might she learn, or say, or do? How might her life, and ours, keep getting better, in spite of Rett Syndrome's persistent efforts to ruin it? I guess we'll see!

Friday, July 24, 2015

The Hunch

Three years ago my body went from experiencing a normal amount of occasional stress to seeming to be in a constant state of "preparedness". By that I mean, I feel like I am in a constant state of waiting for whatever's going to happen next. Throughout the day, I often remind myself to stand up straight as I feel most of the time like I am always hunched over, bracing myself. Imagine a wrestler getting ready to begin a match, but I know my stance is probably barely noticeable to anyone but me. When I remind myself to push my shoulders back and relax, I am not actually crouched down preparing for battle, but I instantly recognize that feeling within myself, and I try to relax a bit. 

I don't believe this feeling of waiting, watching, and worrying about what dreaded thing will happen next is exclusive to parents of children who have received a diagnosis such as Lu's. I imagine people can wind up feeling this way for jillions of reasons: a terrifying car accident, the sudden death of a loved one, being in remission from cancer, a home invasion...the list could go on and on.  And maybe there are only certain personality types that would react to traumas in their life this way, I don't know. But, as is the nature of Rett Syndrome,it never stays the same; Dr. Sasha calls it "a moving target".  It is always changing and so how can I not constantly be on my guard for what it is going to throw at Lu next? How?!

Since the time of her diagnosis, she has lost the rest of her functional hand use. One day I had to admit that she couldn't turn the pages of her board books anymore, which was something she used to love to do. She had little bins of them and she would pull them out and flip through them and look at them so intently:

Back when these pictures were taken we had no idea that within two years this simple act would be an impossibility for her. 

Here is a picture from the summer where she began losing her ability to sit up on her own:

And before she lost the ability to scoot all over the floor, which she could do for a very brief time:

Of course there was her mouth losing the ability to eat enough to maintain a healthy weight and the placement of her feeding tube:

And now seizures that leave her exhausted afterward, and even recently made her lose consciousness before the seizure had ended because she was not breathing:

Tooth grinding, hyperventilation, breath holding, constipation, changes in muscle just never ends, and never stays the same, and never stops terrifying me. I guess the old cliche "waiting for the other shoe to drop" is fitting, but in this case I am waiting for her spine to start curving, or waiting for her first case of pneumonia, or for her heart beat to become irregular, or any other number of things that can go wrong, and may or may not. 

So, while it would be beneficial for my body and mind to be able to relax a little bit and "un-hunch", I just can't. Lucy's life and health, and well-being are in Chad and I's hands, all day, everyday. It is every parents' job to keep their child alive and safe, but when extra health concerns are thrown in, I am literally, day in and day out working to keep her healthy enough to live. Not only JUST healthy enough to live, but to live AND have a quality of life that helps her to make friends, have new experiences, become educated, and happy.  Not worrying about these things is not an option, we must be ever-vigilant, always standing guard and trying to keep Rett Syndrome at bay the best we can.