A couple of weeks ago, I posted “A Poem From a Parent-RD” on social media. I had been keeping it for a while, waiting for the right moment to share, and that was it! It fit perfect with the day that I had had.
At the beginning of November, B went for her first Botox treatment in her legs. Botox is a common treatment to relax spastic muscles in a person with Cerebral Palsy. I’ve shared this before, but sleep is a mystery in this house. There are good nights and bad. The bad, are nights of constant unrest and painful legs for B. Aside from the benefits with movement in general, we were hoping that the Botox would bring rest and painlessness to nighttime. This however wasn’t the case. The changes in walking, falling episodes, toe dragging, gross motor skills, and confidence have been incredible and without a doubt one of the greatest things I’ve ever witnessed, however the pain didn’t quit.
At B’s first physio/OT appointment post-Botox, everyone was so pleased with the changes and ready to encourage activities to begin strengthening those muscles that could now engage. How exciting this was! It was also so amazing to have others as excited as I was about the difference in movement. We left that appointment with some movements to include into routine and ideas to begin this strengthening.
It then came time, after a month, for the second post-Botox physio appointment. This time it was only a physio appointment and not a joined physio/OT appointment. I was nervous. For the first time in all times bringing B to physio, I was nervous, anxious, and embarrassed. Usually I have progress to announce when OT is involved because we homeschool preschool and tips and suggestions from B’s OT were some of the reasons why I chose to buckle down and do it. I had observations to bring to the table for this appointment, but no progress to announce. How much I felt like I failed B that month.
I had so many reasons in my head why there was no progress. 1. I was exhausted. Some nights I wonder, what is the point of sleeping because I never really go through all of the stages of sleep anyways. 2. Some days are so long. The added time to do things with braces, physical instability, therapy, and a toddler with a real zest for life really adds up. I’m not ever complaining when I say that- it’s just a fact. The need to remember everything in a normal day’s schedule is already overwhelming enough, and to have to add strength building to all of this was so much more! 3. As mild as B’s CP is, there are huge differences between her and her brother, who is younger that her. There are with all siblings, but I’m not talking about the ‘regular’ differences, I’m talking normal skills like jumping and running where the older one notices that the younger one can do things and “why can’t I, I’m older?” comes into play. I knew this time would come and it’s not creeping in anymore- it’s invited itself in. I’m an active person and always have been. Exercise is part of my lifestyle and here it’s been the hardest part to incorporate without a recreational class. To find the one-on-one opportunities amongst the craziness is difficult as I know so many of you can attest to. As a parent, on top of trying to reel one in and physically assist the other, building resiliency and confidence now becomes more important than ever.
But I’m not an excuses type person. To me there were no excuses that justified no progress. At the end of that physio session, B’s physiotherapist asked if B could come once a week up until Christmas to get things moving along quicker while the Botox was still working. Of course I said yes and expressed my gratitude, but I almost fell apart. Usually I struggle with asking for help and accepting that I just might need it. Today was different though. I was so upset with myself but I let my guard down and accepted the fact that I needed help to offer B the best chance of strengthening and developing more of those “normal” gross motor skills. After all, that’s what therapists like B’s physiotherapist are there for! So after that appointment, we quickly left the building before sobs erupted, I hugged B extra tight, and had a little cry on the way home.
“I have never been so exposed and so vulnerable.
I know you care.
I know you are good at your job.
I am thankful for you.”
It was at home that evening that I remembered a poem that I had saved in my photos and it was calling me to read it again. I did and whomever wrote that poem, I swear, couldn’t have been more bang on. B has the most amazing medical support system at the Glenrose and really we couldn’t be luckier to require their help, but as a perfectionist parent, this explained everything for me at that very moment and helped me feel not so alone.
So why am I telling you all of this? Because we are all struggling with something, we need to know that we are not alone, and that we are doing ok. We are not perfect and we will need help at times. We are all trying to do the best that we can. I’ve always believe that struggles are subjective to a person’s situation as well. What is a struggle for one, might not be for another, but we are all dealing with something subjective to our environment.
I find for myself that hearing other people’s trials and tribulations as parents make me feel not so lonely and/or incompetent. As parents we often feel so judged by others and we are scared to share the ups and downs for that reason. Whether you are a working or stay-at-home mom or dad, caregiver, aunt, uncle, grandma, grandpa, etc,…hearing those ups and downs make us better parents. When your child flips off the change pad on the dresser for the first time and you feel like the worst parent ever, what makes you feel better?- Hearing that someone else’s child did the same thing. Maybe it’s hearing of someone else’s child touching something hot, falling down the stairs, getting into a childproof container, swearing or saying something inappropriate out in public, or someone forgetting their child at school or daycare, etc… that made you feel better and less of a failure as a parent. Maybe it’s hearing that another mom went back to work before a year maternity leave, that another dad is unemployed or works out of town, that another couple is struggling to stay together, that another couple is concerned about bills- nonetheless, hearing that someone else is going through the same thing is therapeutic.
There are always going to be those parents who judge and act like they are perfect. The ones who will never share what has happened in their house because it might make them look less perfect. The ones who make you feel like crap for sharing your stories. Just like everyone else though, these parents are also struggling with something and are doing the best they can.
Now go on with your day or night and remember that you are doing ok, if not great! It is ok to ask for help, it is ok to break down, and it is ok to toot your own horn too because you are fabulous and you’re doing the best you can.