Today is Aaron’s birthday. This day is always a day of
disbelief and reflection. For some reason I can never believe that he is actually
getting older. My reaction usually starts a week or so before the big day with
exclamations like “He is going to be 6!” “Can you even believe it?” “How is he
already 6?” This year proves to be no different. I stand in utter amazement
that my baby is growing up. For some reason, this particular birthday is
hitting me rather hard. He is 6. Age six is not usually a BIG year to reflect
upon or get extra excited about, but I am having a hard time. Maybe it’s because
he finished Kindergarten, or knows how to swim or rides a bike. Maybe it’s because
we still have three long and torturous days of school left before summer break.
Or just maybe it is because I have finally realized that Aaron is JUST SIX. There
is no miracle, no fireworks, no coming of age party every time he makes it to
another year. You see, when Aaron was born with Down syndrome, we were shocked,
surprised, sucker punched. We were not prepared and not ready to accept the
world set out before us. We were scared as noted in my original post: Aaron's
news. For lack of a better term – we were uninformed.
As we celebrate Aaron’s birthday, I have been wishing I
could go back in time. I wish I could speak to myself 6 years ago and tell her
a few things. I know she was scared. Those emotions are still so raw. Every
time I go back to the day we learned our destiny, it brings tears to my eyes. I
remember those feelings of loss and sorrow and fear. I remember wanting to run;
wanting to change the situation; to change the outcome for the sake of my son.
But if I could, I would take myself out for a cup of coffee (or a bottle of
wine), look myself in the eyes and tell her IT WILL ALL BE OK.
If I could actually do that – this is what I would say:
SELF – it is seriously going to be fine. I’m not just saying
that. It is for real, 100% going to be OK. Aaron will have good days and bad
days like everyone else. He will actually not even be your most challenging
child. He will fit in with your crazy, busy family and survive.
Aaron will represent change. He is the future. He is a way
of life that people will long for. He brings a smile to others when they feel
tired or weak. He is the hug people need when they feel sad. He is a drink of
water for those that are thirsty. His pace is slower and shows others how to
stop and enjoy small steps in life.
DO NOT BE AFRAID! The
road is long but not impossible. There are many who have paved the way before
us and are more than willing to lend a hand.
Aaron will walk and talk and tell me he loves me and use the
potty (praise God). He will kick a soccer ball and tease his sisters and swim
and laugh and dance. (Boy can this boy dance!) He will hog a microphone and
don’t even try to sing “Let it go” with him. The stage is all his. Aaron will
have friends and get notes from classmates and be invited to birthday parties. Aaron
will have opinions and not be afraid to express his feelings.
You will grow. Aaron will test you. He will try your
patience. There will be days when you want to give up, throw in the towel, wave
the white flag. Just keep pushing. Over each of these mountains, you will witness
the most glorious accomplishments. You will weep tears of joy when Aaron reads
for the first time, call every friend you have when he speaks a full sentence
and perform actual cartwheels when he goes on his first playdate. You see,
everything is a bit sweeter for Aaron. Maybe it’s because you are not expecting
it. Maybe it’s because he is not “normal.” Maybe it’s because of our fear.
Whatever the reason, Aaron will succeed. And when Aaron succeeds, JOY is
defined.
Here is what I now know about 6 year old Aaron:
He is BRAVE.
He is stubborn.
He craves adventure.
He loves to laugh and make others laugh.
He is NOT always happy. He feels every emotion and will show
them to you in full force.
He does not hold a grudge. Ever.
He is consistent and every day after school I get a giant
hug and am told “I missed you!”
He will shut an open door or drawer without fail – every single
time.
He will do just about anything for a piece of raisin toast with
butter.
He is smart – brilliant actually.
He has special powers. To know him, is to love him. Even if
he makes you frustrated or mad – you can’t help it.
You will get frustrated with the world as you know it. You will
want to change society for the sake of your son. You will get mad at the school
system and sports and organizations because you son doesn’t fit the mold. It’s
OK – he is not supposed to fit the mold. He will change the mold.
Eventually after our long conversation and perhaps more than
one bottle of wine, myself 6 years ago would be calmer, more prepared and a lot
less afraid. Today I still have worries and fears. But they have a different
context. They are more “normal.” The questions are: where will Aaron have the
opportunity to go to college? Where will he live? Who will he marry? What will
he choose as his career? I wish my former self could have skipped the grieving
and transcended straight to hope. Aaron is hard and tiring and exhausting. So
are his sisters. It is called being a parent and Down syndrome does not limit
my son. Recently we have taught Aaron to say “Don’t limit Me!” I think this
should be printed on every prenatal testing result, sonogram picture or karyotype
print out. Don’t limit me by my diagnosis.
We are only limited by the pace of life, by the square we
are supposed to fit in. Aaron doesn’t fit the mold. Don’t limit him to the box.
Happy Birthday Aaron – you are loved fiercely.
