29 Days of Purple... and I'm Exhausted!

We’re 29 days into October, and my entire Facebook and Instagram feed has been purple this whole month with posts about Rett Syndrome Awareness Month. Yet so far, I’ve remained silent. It’s not that I didn’t want to join in and publish advocacy posts alongside my friends this month, informing my handful of followers about Rett Syndrome. It’s just that EVERY DAY is Rett Syndrome Awareness for me. Every. Damn. Day. And I’m exhausted.

I’m exhausted waking up two or three times a night… not with Kaitlyn, my four month old - who has been sleeping 10 hours straight through the night for the past two months already; but with Madison, my five year old daughter who has Rett. I’m exhausted just knowing this will likely never end. That the chances of me ever getting a solid, good nights sleep, are slim to none.

I’m weary of the monotony each day brings me. Madison’s schedule doesn’t change. Her routine remains the same. She is locked in as a two-year-old. While her body continues to grow, and I believe her brain does too to some degree, her mannerisms and habits don’t change. Spontaneous decisions don’t exist in my home. To be blunt, it’s boring. Many days I don’t even remember what I’ve done, because I’ve just been going through the motions.

I’m worn out and drained physically of all the demands a non-ambulatory child places on me. In the beginning it was easier. She was smaller. But she continues to grow. I don’t think people understand the physical toll having a child with Rett Syndrome puts on their caregivers. Getting her out of bed in the morning. Diaper changes. Getting dressed. Moving her to a chair. Bringing her to the table. Sitting her on the floor. Getting her into a vehicle. Feeding her. Taking a bath. Diaper changes. Putting her to bed. It hurts. I’m constantly in physical pain. I’m not strong enough for this, and it’s just going to get worse. No!!! Things do not get easier! Rather, we must get stronger. So, it’s off to the gym every night once she’s in bed; even though I’m completely worn out.

I’m finished explaining to friends and family members that there are no treatments and there is no cure for Madison. I am employing every possible strategy and therapy for her in an attempt to make her quality of life the most enjoyable and tolerable, but they are not “fixing her”.

I’m empty as I continually give all I have to Madison. There is a fine line of deciding whether to put yourself first, or the needs of your “Code A”, completely dependent and severely disabled child first. Furthermore, I have found it to be damn near impossible to find the time or opportunities to recharge, leaving me continuously empty.

I’m depleted of all energy and the mental grit needed to get though each and every day. Never did I ever think that having a child like Madison would be so mentally and emotionally exhausting. I often liken it to a video game. You know how at the beginning you have those 5 red hearts in the top corner of your screen, and then with each battle, challenge, or obstacle you’re faced with, your hearts start to fade away. That’s how I feel every single day. The only problem is at best, I begin my day with only two or three hearts - and often they’re not even full. What crushes me even more is that Madison has to share me with the other four members of the family, and I don’t get a new user or “account” for each person. So if Ethan or Liam have a bad day and I need to attend to their needs and help them, they will often drain me completely, leaving me with half a heart and “fighting for my life” while still having to give Madison my all.

I’m shattered every time I let my mind wander and think of the “should have, would have, could have” scenarios. I recently posted my favourite, most precious “father daughter” photo I have with Madison. But if you look closely, you’ll see a sadness in my eyes. Not hers! She is overjoyed and on cloud nine. But for me, every day is a struggle to push those thoughts aside and embrace Madison for who she is, and not for the hypothetical daughter I wish she had been.

I’m fatigued by the overwhelming therapy schedule and medical appointments a child with complex needs such as Madison demands. Madison alone has between 8-10 sessions or appointments each week. Oh, and the paperwork. The binders and binders of papers. If you thought the world has gone digital, you are so very wrong. Just walk into a special needs families home - I guarantee you’ll find the mountain of papers somewhere. None of us have trees in our yards anymore, because our therapists have cut them all down to fuel their paper addiction.

But then I’m also filled with guilt. How can I complain about this all when it is Madison who is the one living with Rett. I didn’t know a disorder like this even existed before Madison came into my life. I had heard of the big, common ones like Cerebral Palsy and Epilepsy and Parkinson’s and Autism, but I never though for a second there could be a rare neurological disorder that encompassed ALL of those disorders (and then some).

How can she live like that?!? How can she still find the courage and ability to smile?!? How is it that she hasn’t just given up yet?!? How does she keep fighting?!?

Today (and the entire month of October) is Rett Syndrome Awareness Day and if you’ve read this far, I’m assuming you were already aware of Rett. But perhaps you didn’t realize just how devastating or exhausting it is for both Madison and me - not to mention the rest of the family. For me and most if not all of the other families living with Rett, we are doing everything we can just to survive.

Our life runs on a different timeline. We have different routines. And sadly, our priorities are much different than yours. Our life is busy, over-scheduled and complex. But we still crave the good times. The experiences that help us forget about the bad times. We still want your attention and friendship - in fact, often we NEED it in order to survive. Just to make it to the end of the day.

So, don’t take this post as me complaining. But rather read it for how it was intended… to spread awareness! This year instead of informing you how many girls are born with Rett Syndrome each year, or what the common symptoms are, I decided to provide a more real, raw and vulnerable look at what life with Rett is all about.

And finally, don’t be shy. I need you in my life. So does Madison. We can’t do this alone. I ran into a person this past weekend who recognized me and admitted that they “secretly followed my account from in the shadows”. I don’t like that. Leave me a comment. Send me a DM. You never know… it may be that small action that helps me get to the end of my day.

Thanks for following along with our journey.