Rett Syndrome Awareness

NOTE: This blog started as a Facebook post. I had intended to write more for Rett Syndrome Awareness Month, but Campbell was having seizure activity, and that's all I could focus on for the most part.

October is Rett Syndrome Awareness Month(also Domestic Violence and Breast Cancer Awareness). As most of you know, my Campbell has Rett Syndrome.

When she sleeps she seems free of Rett

I've come to terms with the reality that she *may* never walk or talk, and yet I hold hope to science that makes amazing strides, almost weekly. Treating Rett means potentially treating conditions like Parkinson's, anxiety, epilepsy, autism, MS, you name it. It's referred to as the "Rosetta Stone" of neurological disorders, as Rett has all the symptoms of so many other conditions.

Awareness is terribly important. Though rare, it is as common as ALS, but almost no one is aware of it until it hits them personally in some way. Being aware of Rett, and how important it's treatment can be to more than just the Rett community, is a big deal. A light needs to shine on this condition that takes our girls away from us.

"Hey, dad, tell then how great I am!"

There will be fundraisers. There will be a lot of posts on social media. You may even be reading this as one.

Google "Rett Syndrome". Read my earlier posts. I wrote this one just a few months after Campbell was diagnosed, so the feelings were fresh. I wrote this one much later, when I had more come to terms with what Rett Syndrome meant for us and would continue to mean to us.

What this means for me, is that I have a 6 year old who, while non-verbal and (so far) non-ambulatory, has taught me how to be happy. She manages a word or phrase now and then, and is even taking initiative in learning to walk, for the first time. She has a long way to go, and if certain treatments are found to work, the road for her may be shorter.

She is the happiest child I know. Unless something is truly bothering her, she is happy. She is smiling, her eyes are showing the fire in her soul, which will not be quenched by limitations she has for the moment.

cuddles.

Even in school, around "normal" kids, people love her. She smiles and laughs, and when she's doing therapy rather than mainstream classes, the children miss her, and ask about her. In circle time, if she clasps her hands, a child on each side of her will hold a hand each. She has a way of bringing out the best in everyone..

As my three girls grow into amazing young ladies, each one very much themselves, I realize two won't need me forever. I'm proud of that, and it's also one of the hardest things for a father to accept about his little girls. Campbell may always need me. We're buds. Although I'd do anything to make sure she has every chance in the Universe, I also wouldn't change who she is for anything.

Finally, to anyone and everyone: When it comes time to make your charitable donations, don't forget rettsyndrome.org. 

Rett Girls: It's not all Giving.

 There's something I've noticed about Rett girls, not just my own: Their presence can make the best difference in someone's life.

Nothing else in this world so peaceful.

 There's a lot of yourself you must give, juggling doctors, nurses, other specialists, therapy, and still making time to treat them like the wonderful people they are, as well as siblings.

 It's not even close to being an all-give situation. These girls, just being themselves, teach us so much about life. Campbell is the happiest, and in some ways, easiest child I've known. If she gets her basic needs met she is happy. Sometimes she has painful gas or other issues she can't tell me about exactly, but for the hand she was dealt in this world, she is happy and content. She may want more, but doesn't make a fuss about it. She's good company, and just a smile from her can change the course of a day.

 It's not all giving: You get so much back in return without always realizing.

More infectious than ebola.

 I'm getting close to a solid two-month, stabbing headache. Any time I tell someone it feels better, my optic nerves decide to have knife fights, and they both constantly and epicly LOSE.
  The only time my head has hurt this bad was when I was in the hospital with a nitrous patch. My blood pressure has been too high for close to 15 years now, and lowering it HURTS. This was confirmed by my doctor - with all the extra meds I got, the ones for the blood pressure are working perfectly, FIRST TIME.That's a huge relief for me.

  I mention the headache for a reason. I was feeling it hard last night, eyes watering and all I wanted to do was lay down. I couldn't until I filled Cam's feeding machine at 10. I hung my head down and closed my eyes. Cambell, oh so gently, grabbed my finger and pulled my arm so that it was around her, and when in place, started stroking my forearm as if to reassure me. I opened my eyes and looked at her and she gave me the biggest smile and laugh. Then she farted and we both laughed.

  Most people won't appreciate what a miracle such intentional hand motions are for a Rett girl, but I think most will appreciate what a miracle she is as a human being.

HEY! I Thought you was Supposed ta be Bloggin'!

Having a child with Rett is a profound experience.

Blogging is a terrific way to get some thoughts, important and otherwise, out into the world to share.

Blogging about your child with Rett is hard. For my personal ramblings, stories, poems, geekish writings, I'll post things without a second thought. Nothing is ever good enough to write about my girl.

Campbell is 6, going to school, and making a ton of friends. So much has happened I want to share. As I reach brief moments of calm, long enough to put thoughts and experience into words, more happens. Sometimes a setback, sometimes amazing things happen. The latter is more often the case lately.

I'll do some elaboration in the "near" future, but here are some highlights:

• Campbell had a g-tube put in. For those unfamiliar, it is a feeding tube. Hard to think about anyone putting holes into my angel, but it has been terrific for her.
• Campbell lives with me full-time now, with her little sister.
• We've moved to a new city, with new resources, though completely unfamiliar territory with no established network of support. As scary as that was and is, it was one of the best things I ever could have done.
• Campbell is finding, on her own, new ways for her to communicate with us.
• She's just an awesome kid, and that warrants it's own bullet-point

There's so much to share when it comes to my little peanut. She's brought out the best in the world around her, which shows that much more since moving to the "city". There's a lot to do, and it feels like I'm feeling my way in the dark here, but never has anything been so worth it. I hope that sharing my experiences can help others, even if it's just to get an idea where to start.

To those new to the journey, welcome. To those already sharing the journey, feel free to add in the comments to any of my posts. There's so much that we share, and so much more that's unique.