Usually it is the female half of an older couple sitting behind us at church that speaks up. You have a beautiful daughter, I will be keeping her in my prayers. And I appreciate the kindness. I appreciate the prayers. But as I walk out to retrieve my 2 Sunday schoolers I can't help but wonder what exactly they are praying for, what need they are perceiving, especially after she sat quietly through the sermon. That is any parent of a 5-yr-old's dream. Amen?
We get to have a number of conversations on a
nearly daily basis with virtual strangers. I should probably print a script on some 3x5s and just hand them off. I think the same thing can be said of a many stages of
life, only these other stages you tend to move through fairly quickly
whereas we will hover here for her lifetime. When you are engaged
everyone wants to know the date, the venue and the honeymoon location.
When you are pregnant you recite the gender and decision on names, maybe
the nursery decor. When you have young triplets people want to know if
you were surprised and when you ever sleep. Also how they were conceived, but whatever. So when you have a child in a
wheelchair it is the diagnosis. People ask me all the time what Mya
'has'. And then I file through the list of diagnoses in my head
wondering which version of Cliff Notes to give this particular stranger.
I usually settle on Cerebral Palsy because that is the most often
recognized, even though it probably gives the least amount of
information. And then the conversation goes one of two directions. The
first I appreciate, when the stranger makes a positive comment about my
beautiful child sometimes labeling her as a blessing and sometimes
simply going about his or her day. The second I tolerate because most
people generally mean well. You, Stranger, really don't need to be soooooo so sorry.
We aren't really, not for the CP. We've grieved the typical life she will not have and for the most part embraced our present. You really don't need to acknowledge the
burden you perceive. I guarantee the life you are imagining for us
resulting from her disabilities doesn't match the real thing. You don't
need to label me a saint for loving my kid. She makes that pretty easy.
And, Stranger, you certainly don't need to do these things in front of my kids.
They sort of just wonder what the fuss is all about.
Yes,
it is complicated. Mya has to work really hard to continue to fall
short of society's expectations but on her own terms she is excelling.
Medically she goes through a whole lot that I would love to take off her
plate. She came off the bus needing oxygen today for a cough she refuses to give up and so we skipped the park. She has seized more than daily for 5 years and 1 month. We have exceeded our average length of time between admissions AND we are entering virus season and so there is a lingering fear in the air of this house that my essential oils haven't been able to quite clear. It will probably dissipate somewhere around Easter. These things are rotten but since I
rarely share them in the checkout or the communion line this isn't what the stranger means.
These things certainly aren't the whole picture. Well meaning strangers
don't get to see the whole picture. And so I remind myself of this as
someone pats me on the back and offers a prayer for my hardship along
with their long face (all.the.time). They don't know that my house often, like today, has oxygen tubing
tangling with princesses and matchbox cars because we keep playing. They don't know that she is
smiling again, vocalizing joy and making eye contact and that these
things are as huge for us as any milestone her siblings reach. The strangers don't know that this afternoon she was in control of our dance party music and she loved it. She is
making great strides at making choices of music and activities and that points
to a whole load of potential for communication. Don't be sorry for who
she is because we certainly aren't. I count her as one of my biggest blessings.
Yes, we could usually benefit from some prayers because her health is sort of a roller coaster ride but please don't offer them simply because you see a pink wheelchair. We love her pink wheelchair. It is heavy but it is making all of us stronger.
