Slo-Mo Option


I consider myself a fast paced person.  I make lists, I check them off, I take too much on at once, I multi multi task, and when I exercise I do yoga to slow myself down.  And then I crash.

Since Jack was diagnosed I have been constantly teaching myself to be SLOW and to appreciate.  At many times I am but mostly I am forced to be focused (medical care).  As Jack progresses in this horrific disease the slowing down has become crucial. He is reliant on me for everything he does and MPS care providing duties just can’t be rushed.  For example we have had to start managing certain feedings with him.  Meal time has changed.  Remember when your baby was able to do finger foods and you were like yay I can give my child some food and have some free time to do other “stuff”.  Well we are at the opposite turning point, so this freedom is gone again.  I must slow down and to be okay with letting that “stuff” be on hold while I tend to the task at hand, Jack’s favorite time of the day.  The watching of proportioned food move about the mouth and being swallowed is far more important now.

Another example of changes around here, Jack continues to lose his ability to communication so I have started to prioritize understanding his thoughts.  Which entails slamming on the brakes to be present and still.  I study his face figuring it out… Wondering if my questions are accurate?  My answers are true?   Is this what you want?  Is this what you need?  It’s surprisingly insane how many non verbal cues are given out when we are attentive.  When I am slow I see them.

Again applying the brakes has never come easy for me.  For a long time, I resisted this notion of slow motion special needs mothering.  I continued to run faster than a speeding bullet to every type of therapy, specialists, school meeting, advocacy groups and such.   Often slowing my pace only slightly as I dragged my overwhelmed son along.   It took quite awhile to realize that providing Jack too much sight, sound, smell, touch and taste information resulted in emotional overload.  And caused myself to turn into the anxious mother.  Neither of us benefited.  Now racing time is for my daughter, and it entails a start and finish.  Jack is slowing down and therefore I must slow down and I am getting the hang of it.  And amazingly enough the panic is my chest ceases to be there because I can breathe.

I know I am often overtired and find myself screeching to my halt, but I do find time to edit this new life skill within my ever so challenging journey.  And I recognize that slowing down looks different within each family unit and even within our family.  Shoot it changes day to day in our home.  And it certainly isn’t about doing nothing, I have learned its about doing thing consciously and at the right pace.  The right pace for Jack.

Don’t we all want attentiveness and unpressured time?

May we all take time to be thankful and grateful this Happy Thanksgiving.

Road leading to the ocean with 'slow' painted on it

5 thoughts on “Slo-Mo Option

  1. Thank you for sharing such a personal journey. The courage involved in your journey and other families impacted by MPS 2 is not unseen. It is physically and emotionally moving to witness the strength and unconditional love that is demonstrated here.

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