A loaded question that causes me to stop and think nearly
every time.
"How is he doing?"
This comes up in many different venues from close friends or
family to complete strangers that seem to be in on our little extra chromosome
secret. Why is it loaded? Mostly because
there are a million ways, it seems, to answer the question. Also, because I
sometimes find myself more questioning the intent of the question, rather than
taking it as just a question.
From a stranger…
When someone I have never met before strikes up a
conversation about Sir Owen, I can tell quickly whether they see his almond
eyes and Brushfield strokes. It seems to be those beautiful blues that tip
people off to the 47th chromosome.
It almost always starts with a comment like, “He is so ________!” Fill
in the blank with: precious, beautiful, special, handsome or smart. (yes, smart
has been said. Apparently you can totally tell cognitive ability by the way he
does long division in the shopping cart at Target while sucking his toes, but I
digress…)
Regardless, when a stranger asks, it generally is my cue
that they see that Owen has Down syndrome and that they too probably are part
of the “club.” (See a friend’s awesome post on this phenomenon here). It almost always leads to a cool connection to
someone and it is nice to know that we are not alone out there in the
world. Comforting and encouraging. But,
a little part of me is a bit surprise that someone noticed since I very rarely
see DS when I look at my son. And that tiny piece of my being then begins to
wonder how many people just see the DS when they see us out.
From an acquaintance…
When someone I don’t know very well asks, it can be for all
the same reasons that a stranger might.
Often there is a connection they have to DS and they encourage me with a
story or two about their cousin or friend and the amazing things they are
doing. When Owen was first born, this
drove me insane. Now, I look more
towards the future and fear it a bit less, so I do find the stories
encouraging. I like to hear the awesome things that people with T21 are doing
and how normal life really can be. It is a nice boost to hear these days.
The only time I get irritated by this question is when someone
I vaguely know asks it along with a sideways nod and concerned look. You know, the one that is really asking: “How
bad are things going, really?” That always puts my on the defense and,
depending on my mood, sends me into a monologue about how fantastic life is and
how awesome he is doing. Or it may get an
abrupt, “He’s great!” before I move along.
This is the question that bothers me because there is that deep
assumption (that I totally also had before I had Owen!) that because he has
Down syndrome life must be awful and terrible.
From someone in the
DS community…
Can be loaded…I think this actually more relates to how well
I know the parent. I have learned that
just like in any community, there are people I identify with and people that I
do not. I have been incredibly fortunate
to have met many families that I can share this experience with in an honest,
vulnerable way. So much so, that as I have
branched out, I forget that the supportive groups I have come to know are
unique and special for a reason. If
someone asks in some arenas, I know that I can give the real answers: the good
and the bad. They will cheer on the good
and offer support and advice in the bad.
They will not judge my feelings, for they are just that, mine in that
moment.
In some venues, however,
it is a very different question. There
is a sense of comparison and need for validation. There can be a sense that they are really
only asking, because they know that their kid can do XYZ and O is not even
close yet. It leaves me with a sore
tummy, generally, as it reminds me how natural comparison really is and how we
really all just do want our kids to fit in, somewhere. Anywhere.
Thankfully these are few and almost always online, but it is
a reminder that even a generally welcoming and loving community as this still
has all kinds of people in it. Which
also, as I consider that, probably speaks volumes to how TRULY AMAZING the DS
community is. We are a subgroup of the
world that is comprised of people from every background, belief and status;
yet, in my short blip of time on this journey, I have found it nearly all
supportive and welcoming. This is also
why I generally chalk up this question being asked in “that” way to “one of
those days of a special needs parent.” Because even when your kid is “doing awesome”
you can still have those days.
From a close
friend/family…
These are the moments of warm fuzzies for me. These
are the people who have walked this journey along side us from the
beginning. They concealed their fears
and worries and have learned and grown in this with us. They have really stepped up the the ultimate
plate, in my opinion. This has not been
all fun and games and I have run the gamut of emotions since receiving our
diagnosis. I have not also been the consummate
pleasure I believe myself to be (most days).
Yet, they have given me grace and understanding and time. They have been a soft place to fall and our
biggest cheerleaders. I know that when one
of these folks ask “the question,” they
want to know his progress. They want to know how I am feeling about it
all. They want to support us and let us
know they care. Whether it is an email,
text or phone call, I know they are thinking of us and genuinely wanting to
know how things are going – just like they are about anything in my life.
 |
| thank you @ aubrey kinzie |
Generally, when people ask “How is he doing?” they really
just want to know that they are thinking of us and hoping that everything is
alright. Aside from the few that are
just nosy or trying to feel better about themselves, it is a great question to
hear. To know we have cheerleaders and
supporters is great. To know that our little guy might give someone a different
perspective or challenge their current thoughts or beliefs is also
awe-inspiring. Little people making big change.
And for the record, if you asked me how he was doing today….I
would say he: has the greatest smile, is a terrible sleeper, has been pretty
healthy, is getting molars, is getting close to taking independent steps/walking, is using several words, has us wrapped around his finger and has changed my life.
17 months in the blink of an eye.
