All Night Long- My dance with my daughter’s Cerebral Palsy

All Night Long- My dance with my daughter’s Cerebral Palsy

A couple of months ago, I took some self-care advice from Jen the Bitchin’ Housewife. I was up early on a Friday morning and wanted to do something different so I went for a run. I got myself out of the house sans kids and got some exercise in. Little did I know that along my route I’d put some serious ducks in a row. Thanks Jen! When those ducks get out of line, I practice some of my “Living with Vitality” techniques from Anat Baniel, and remind myself of what worked for me that day. Onwards I force myself to go.

 

So much was going on that particular week that was coming to an end when I went for that run. I had nothing left in my emotional tank. Cerebral Palsy, testing, medical appointments, puffers, nasal sprays, therapy, and so much more were dragging me down. We needed answers and weren’t getting any. I hate the process of trial and error. Especially when it comes to my children. It’s like torture. I also hate being told that a Cerebral Palsy symptom or observation doesn’t really exist by a medical professional, when it so very clearly does exist. I shouldn’t have to look to someone on Instagram who actually has Cerebral Palsy for reassurance that I’m not crazy. There was a lot of build up to these powerful emotions and rarely am I given a chance to sort them out for my own wellbeing. So as I was beginning my run, I figured out my playlist and Lionel Ritchie came up. My mom used to play me his records (yes, real records) as a child and we’d dance and laugh together so whenever Lionel Richie comes on, it takes me back to a happy emotional place. Our favourite was, “dancing on the ceiling.” That day, however, it wasn’t “dancing on the ceiling” that caught my eyes and ears- it was “All night long.” I began listening to all of the words and the tears began to flow. They flowed and stopped, flowed and stopped.

Now, if you’re a Northsider here in YEG, seeing someone crying while running down the sidewalk would be placed on the “less weird” end of the spectrum compared to some of the stuff you see. Once I realized this, I just let myself feel…and took more side streets. I listened to the words and I envisioned Cerebral Palsy being a physical being- an opponent. We were in a fighting ring in our fighting stances. As the song blasted through my brain, we danced and fought, and danced and fought. Cerebral Palsy in my precious child, you are not going to take me down. We are going to dance. Our music is going to play on and we are going to lose ourselves in wild romance. We are going to party- All. Night. Long. For as many nights as we have to- for the rest of my life if we have to. Together we are going to ride this Merry Go Round and dance our troubles away. I now feel it in my soul and am going to take control to make my beautiful Breanna the best person she can possibly be with you as a passenger, not a pilot. This exhaustion, dark places, and loneliness is what I make it and if I let it take me down, what am I showing Breanna? I’m not the one actually living with CP affecting my brain and my body. Is it harder to watch it from a parents’ perspective, wanting to take all of the pain and struggles away? Maybe. But that doesn’t matter right now.

As many of you know, nights especially in our house are exhausting. I get less sleep with B at this age, than I did with her as a newborn. If I’m exhausted, I can only imagine how B’s body feels. I’m not the one up because of pain- begging for it to stop. I recently told my husband, “I am constantly amazed with each new level of exhaustion that I can function at.”

This past week has been a trying one. I woke up one morning towards the end of the week after little sleep, ready to give up, shut down, and retreat from the people around me. A pity party was what was going to start that day. This week’s score- Cerebral Palsy bazillion : Mercedes & Breanna 1.┬áBreanna’s first ABM intensive treatment at the beginning of July was one of the most amazing transformations that I had ever seen and she had ever felt, however, we weren’t sure how long it would last and at what point certain characteristics of Breanna’s Cerebral Palsy would begin to return. They’ve begun to reappear and in full force. It’s as if the ABM has allowed Breanna to take a mini vacation from Cerebral Palsy affecting certain areas of her body and now that it’s reappearing, it wants her to know tenfold. The stress on her body and metamorphosis of how much less she is able to carry and control herself this week has been depressing to watch as a parent. We were housebound with the exception of short and necessary outings in the event that Cerebral Palsy wants to make sure we know it’s there. Instead of giving in to that pity party, for some reason, Lionel played in my head and the week of All Night Longs, bedding changes, and tears that had been occurring stood up and said “not today Cerebral Palsy.” ┬áMaybe it’s the second book that I’m reading written by Anat Baniel “Move Into Life: The Nine Essentials To Lifelong Vitality” that tipped it off, but I had a choice to let it get to me or party. I chose to party all day and all night long. Maybe with a little wine, immune boosting supplements, adrenal support, and essential oils, however if I don’t care for myself, I can’t properly take care of my children.

I feel like this week, I had a closer opportunity to experience what it is like for so many families that I love to follow on Instagram, who have children with more severe degrees of Cerebral Palsy. This week was a different beast. Cerebral Palsy comes in so many different forms and personalities with no two alike. For Breanna, it’s milder on the outside and painful behind the scenes. It’s increasingly more prominent as she grows and ages. What is to come? I have no idea. It it is always full of surprises. It is important for me to raise awareness and to tell our story because as a parent with a child with Cerebral Palsy, there is shockingly very little information and support that comes from medical appointments. It is from other parents and other people living with CP that I find the most support and gather some of the most important knowledge.

So now that I’ve shared something personal about how I’ve grown to learn to focus on the positive, because I have to stay focused. How do you bring your A-game? Is it some self-care that helped you along the way? Do you feel it’s naturally a part of who you are? Competitive nature? Is it a meaningless song at the right time that you play when you need? Is it a poem? Is it a family member? I’m not always a believer in “positive thoughts create positive experiences,” but when you’re family depends on it, what do you have to lose?

~Mercedes

Share:

6 Comments

  1. Heshma
    August 26, 2017 / 7:10 pm

    You Always amaze me M ! U rock! Keep fighting !

    • liveitallin
      August 30, 2017 / 9:14 pm

      Thanks Heshma <3

  2. Alan
    August 27, 2017 / 9:35 am

    Thanks Mercedes for allowing us to better understand what you are all going through.

    • liveitallin
      August 30, 2017 / 9:16 pm

      Thank you for the comment! <3 It means a lot to me that you took the time to read my jumbled post.

  3. September 6, 2017 / 6:20 pm

    Oh wow, do I ever know what you mean. It’s so easy to go down that pity road at times. I feel overwhelmed and alone. I tend to retreat too. Three books that have really gotten me through tough moments are:
    Mamma Zen
    When Things Fall Apart
    The Untethered Soul
    A trifecta of awesomeness.
    Running is my exercise of choice. I find it really meditative.
    Sending good vibrations your way! <3

    • liveitallin
      September 8, 2017 / 11:01 pm

      Thank you for the book recommendations Suzanne! I’ll have to look those up! I’m doing a steps challenge for CP this month and I’m finding running meditative as well. <3

Leave a Reply

Your email address will not be published. Required fields are marked *