balance between real life and therapy

for the past year and a half, we have been in intensive therapy mode.  currently, Mikisa has therapy every afternoon during the week…she has physical therapy twice a week, occupational therapy once a week, speech twice a week, and music therapy once.  this is all after a full day of school (where she also receives therapy).  we have seen huge gains in her development, perhaps because of the consistency of all her therapists.  but really, what’s the use of therapy if there’s no follow through at home?  a lot of the actual work of maintaining her skills falls on us in the house.  each therapist has a laundry list of activities and exercises that i am supposed to work on regularly.  it is hard to keep track of all my homework assignments!  i have learned to smile and nod and tell them i will do my best to make time for whatever they are wanting me to focus on.  and i try.  really i do.  but it’s time to start thinking about balance and settle into a more manageable rhythm that feels less like a race.
because Mikisa has multiple special needs and so much to catch up on, we spend a lot of time thinking about what she needs to help her function more successfully.  in physical therapy, we concentrate on her need for endurance, balance, core strength, coordination, and motor planning.  in occupational therapy, we focus on her fine motor skills, specifically the implications of only having one functional arm and hand.  we try to get her to use her left hand as much as possible as an “assist” but she still has not shown any signs of being able to control the movement in her hand.  she cannot dress or undress herself, can’t use the toilet without help, really needs help with most everything.  her speech goals are the most overwhelming…with so much of our daily lives being language-based, communication is an essential skill that we are really pushing.  she struggles with articulation due to her hearing impairment.  but more than that, the basic core language concepts are very under developed and her vocabulary is still really limited.  this affects her behavior, social skills, and educational goals.  sometimes it’s hard to determine which things should take priority and which things can wait until we have more time.  it’s so difficult to focus on all of it at once.
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her therapists are always wanting us to do more, to close the gap faster and increase therapy time during the week.  sometimes i feel guilty for not spending more time working on all her goals.  when we snuggle on the couch or play silly games, in the back of my mind i am often thinking of how to incorporate goals and make these everyday experiences into teaching moments.  it is exhausting!

so i’ve decided to just do what i can and be okay with that.  this is our life and we’re about to add another family member.  things are crazy enough without me putting unnecessary pressure on myself to please all her therapists.  we are going to start scaling back our therapy times so that we can have more family time.  and she will be fine. she will thrive, just as she is thriving now.  she is resilient and determined to beat the odds, and we will still do everything we can to help her achieve as much as possible.

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i realize there is a need for balance in our life.  i wouldn’t change all the hours we have spent at therapy, but i know that we need to slow down a little so that we can get into a pace that can be sustained over time.  it’s not our job to “fix” Mikisa.  it’s just our job to love her.  i don’t know how many years we will be going to therapy.  i want to see some light at the end of the tunnel…but for now, i am just going to keep taking one day, one week, at a time.  i don’t want to look back and wish we had done more for her.  but i also don’t want to look back on these precious years and only see how hard things were.  i want to enjoy my beautiful daughter and her amazing, unique personality.  i want to appreciate her developmental milestones, regardless of how long it takes her to reach them. and i want time for other things…more play dates and trips to the park, more lazy afternoons and spontaneous dance parties, more time to love each other.  more time to just live.

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2 responses to “balance between real life and therapy

  1. I so agree with you! Enjoy living in the moment! Know that by just being her mom and loving her unconditionally that you are doing what God wants of Us. He does not say to fix our children. Yes we want our children to be their best selves and our lives would be easier if they could o more for themselves. But at what cost?
    I think when we have special kiddos, it is so easy to get wrapped up in everyone else’s agenda to fix them.
    Think back on the 5 best memories you have together… Are any of them because you were working constantly in therapy? Mine are the moments when we are just being goofy or when she is her weakest
    and she clings to me and I know she is able to accept
    my love for that little bit of time. So play, dance & love 🙂

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