I would really like to be the mom that has it all together.
You know, the mom that has the diaper bag full of tricks for every possible contingency (oh, did you forget your sunblock? Use some of mine.), early for every appointment, and manages to do it all with a fresh blow dry and painted nails.
I am not that mom.
People are generally forgiving when you have a child with a disability.
I vacillate between feeling tremendously guilty about this and allowing myself off of the hook for my lack of togetherness.
On one hand, I want Danny to be treated like any other child.
So, why should I be treated any differently than any other mom?
We moms can be terrifically critical and sometimes it is almost refreshing when someone scoffs at my disorganization.
On the other hand, the hard truth is that I am very different from most other moms.
He is beautiful.
He is hysterically funny.
He is the light of my life.
He is also extremely difficult to take care of most days.
That is the reality of it.
Danny requires hours of daily therapy, tube feedings, and extensive personal care.
Danny is a typical three year-old in that he wants to play, talk, and interact all day long.
During any given activity, I am an extension of his body.
I build every tower so he can knock it down.
I provide his voice and imagination to every pretend restaurant.
I hold him as we slide down every slide.
Behaving like a toddler is an exhausting endeavor.
It is not for the faint of heart.
I did not work on his hamstrings enough, and now he is having spasms.
I am saddled with anxiety about when the next seizure will happen.
Also, does his chest sound a little congested to you?
Scheduling and maintaining Danny’s appointment calendar requires color coding and spreadsheets.
We coordinate school, various therapies, and doctor appointments.
We live quite close to several of the hospitals we frequent, but we still manage to chronically run five minutes behind.
Luckily, tomorrow is yet another day, and another opportunity to get it right.
I can be realistic about our challenges while striving to get it all done and to be on time.
I will pour another cup of pretend tea and assuage my guilt about the hamstrings of yesterday by extra stander time today.
I will buy yet another calendar and promise to keep this one updated on the refrigerator.
I will do these things all.
Just ignore my piles of laundry.
If a venue improved its changing facilities, would you be more likely to visit it with your disabled child?