“Mom and Dad can hardly wait for school to start again.”

My son showing off his new haircut!

School is starting next week, and I am over the moon. Do not get me wrong, I love my sons. So much so, I pretty much eat, sleep, and breath them. I am not sure when I got the impression that the best way to show love for your children is through self-deprivation. Is it our culture? That I do not “work” therefore I earn and save my family nothing? Hence it would be selfish of me to use time or money on myself.

If I have learned nothing else in the past 6 months, it is my family environment is much improved with my own self-care. As a person living on disability, the spoiled sound of that phrase has made me see $$$$. I am here to testify, however, that all aspects of self-care have to cost beaucoup bucks or require a week’s retreat to a remote spa somewhere.

Some last-minute artwork for my son.

Self-care I am learning is not only a desire but actually a human need! It can be as simple as reading a book alone in your room with the door shut. I am building an arsenal of things I enjoy and can do when I have those increasingly carved out times for myself. Yay, school!!! coloring, thrift store shopping, reading, face masks, audiobooks, exercise, and blogging, to name a few.

Guess what else it has taken me 36yrs. to start learning is, that, people no matter how close they are to you or how good their intentions are, can not read your mind. I know, that fact shocked me too! I am really working in explicitly saying I need…….. I need you, my husband, to take our almost 4-year-old to the playground for an hour or 2. I need some alone time. I realize, that this statement sounds oversimplified and even ridiculous, but if your goal is to have your needs met it is necessary to express them clearly to said person.

My most recent act of self-care is to join a gym for the first time. Now, that my son can drive and has a car we can join a gym together. The first gym I personally have been a member of. Last year, I spent almost an entire year in physical therapy, and now I can use the exercises and tips I learned on my “own”. I say “own” because almost every other part of my life, I rely on the help others. My son and PCA’s will be there helping me get on and off the machines, driving, while my other son is either in preschool or sleeping at home with Dad.

The third day at the gym!

I was told at the time of my diagnosis 2001 “I did not need to exercise since my muscles would slowly disintegrate anyway”. I have found although this a significant side-effect of my disease there are notable benefits to regular exercise for someone with FA. The first and highest on my personal list is the improvement to my mental health. Here comes another “news flash”, depression runs rampant in people with disabilities. Whether one wants to blame the reason on genetics or the fact that having to rely on others to maintain one’s personal hygiene, blows, it doesn’t really matter. Just like others or “able body” people say gains matter! Even if in this case gains = maintenance for a few more years. Even though, I may never look like, or run like, most of the other women at my gym. It is MY gym and my family does benefit from the best me, I can provide.

My kids are starting school next week, and I? I, am continuing to better myself and appreciate myself. And at the end of this school year hopefully, we all will have learned a little. The goal being, that with this added knowledge, my household will become even stronger.

3 thoughts on ““Mom and Dad can hardly wait for school to start again.”

  1. You are amazing – fighting for what is best for you & therefore your family too is an inspiration! 🙂 Can hardly believe how fast your sons have grown and all the milestones they are meeting. You set an awesome example for them! xoxo Hope I can support you in this in any way I can.


  2. I had no clue you had FA when you sent me a friend request , did you find through my relative Jessie who has it ? You always are so positive , smiling , . I am more in awe of you than ever . stay strong , keep smiling


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