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A Mothers Pride:
Dear Jake
I’m so proud of you today! You were wonderful at child
care and walked beautifully there and back. When I came to
pick you up and C---- told me how good you’d been and
how much fun you had, I felt great.
Sometimes I wonder how confusing life must be for you. You
smile every day, and I’ll be forever thankful of that
because I know so many are not quite so lucky as your Daddy
and I are. I am always proud of your accomplishments, however
small. Walking to child care may not seem like such a big
deal to anyone else, but I know how hard it can be for you.
You get distracted easily, and Mummy can’t always devote
all her attention to you because she has Brandon and Megan
to think about as well. But you behaved so well today that
I feel energised.
When you were diagnosed two months ago it was still a shock,
even though we had suspected it could be possible for a while.
I still remember that day. I am especially proud of how you
have learnt - in the last few months - to walk calmly beside
Daddy or I, and how this allowed us to take you to the Botanic
Gardens for a picnic lunch on the day of your diagnosis. Daddy
and I weren’t feeling very happy because we’d just
had some sad news, but you behaved the same as you always
do, which is exactly what we both needed. You laughed alot.
You sat on the grass with us and ate your sandwich. You looked
around and seemed to enjoy being somewhere so green.
There was a group of mothers and children not far from where
we were sitting on the grass. I think they were all friends
- there was maybe another eight little boys and girls, and
they were all doing what we were doing - having a picnic on
a nice day. They were all different sizes, but most were probably
close to your age of 3 years. But they were different too.
The boys and girls chased each other. They talked. They teased.
They laughed at the silly things each of them said. They played
games. I wondered what you would do if you could be a part
of their little group. Would you observe them for a while
and then try to join in their strange ways of playing? Would
you get angry because a boy was playing with a toy you wanted?
Would you become "pushy" and make one of the girls
cry? And I wondered what they would do if you "asked",
in your own non-verbal way, if you could please play with
them. Would they laugh because of the way you flap your arms
when you’re excited? Would they ignore you because you
wouldn’t have understood the rules of "chasey"?
Would they whisper to their Mummies because of the strange
"language" you speak only to yourself?
I try hard not to think about this, and other situations like
it that I know will come up as you get older. I can make myself
cry thinking about how harsh other boys and girls might be
towards someone that isn’t quite like them. I wonder
if you will ever make a friend. I wonder if your "choice"
of friends is going to be restricted to other boys and girls
like you. I wonder if a "normal" kid is ever going
to see past your strange habits. I hope so sweetie. I really
do.
Sometimes I wish you would stay three years old forever. A
child’s innocence is special. A "special" child’s
innocence is amazing. You take everything at face value. You
don’t lie - you couldn’t even if you did have a
good grasp on verbal language. You don’t have the capacity
to tease someone, because you don’t understand that the
differences in other children that might make them the brunt
of someone’s jokes - such as a wheelchair, or a lisp
- are anything different to the norm. I’m not sure you
realise you are different. I’m glad of this, for now.
To be different is one thing, to know it must be crippling.
You have bad days and you have good days. The bad days must
be so hard for you. Everything hurts - noises, lights, Mummy
not understanding what you want, Brandon taking your toys,
Megan crying. You react the only way you can. The good days
are very special to me. I love you ALL your days, but your
good days make me feel special. On good days, you smile and
laugh, and I know you are happy and that I’ve done at
least part of my job as your Mummy right. Your kisses are
the best thing. Even your acceptance of sitting in my lap
to watch a game show makes the rest of the day perfect, even
if it wasn’t.
You are a beautiful child. But I’m your Mummy and I would
say that anyway. Your stare when you are in your "comfortable
place" and the relaxed way you curl up under a blanket
- with only your eyes peeking out - to watch TV only serves
to illustrate your personality. Daddy and I have a big photo
of you, framed and on the wall. It is my favourite picture
of you because I can’t believe how well it captured the
essence of YOU. It was taken when you were just two years
old but you looked wise. A huge mop of blonde hair and those
blue eyes. Perfect.
I delight in any - and all - of your achievements. You don’t
just acquire a skill - you earn it. This time last year, when
you were just two-and-a-half, you had only a few real words.
You worked really hard and now you talk like an angel. Sometimes
the words are still warbled, but to me they are like music.
Words and phrases repeated from television programs remind
me of the fact that you were happy enough while watching them,
that a part of them stayed with you, to be repeated for more
enjoyment later. Others might look at your words and dismiss
some as pure repetition, things you say without comprehending
their meanings, but I know how hard even these were to begin
saying. You’ve come a long way in only a year. I love
your persistence.
I love that you are so attached to your Daddy. I know it makes
him feel special. We feel very lucky that you are able so
share so much enjoyment with us. I don’t think Daddy
or I could live without your smiles and hugs. I know it must
be confusing for you right now because Daddy is gone alot,
but I know he loves you very much and misses you everyday.
In a funny way I’m happy that I’m able to spend
so much extra time with you now - I enjoy walking you and
Brandon to child care. I’m really happy that you seem
to be fitting in well and enjoying your time there. I was
worried that you would be frightened and confused but you
are doing so well.
Life is not always going to be easy for you. I need some time
to understand that myself - I know I’m not there yet.
I want you to go out into the world and get the most from
it, even if the "getting" part is going to be harder
for you than for another boy or girl. Sometimes though, I
get scared for you. I thank the powers that be that you don’t
understand how hard the world is going to be right now. But
I do. And when I think about these times I just want to wrap
you up in Nana’s quilt and watch Wheel of Fortune with
you forever. I struggle with the division of needing you to
find your own way despite the hard times and protecting you
from the exact same world at all costs. I think this is the
hardest thing I - and Daddy - are going to face as your parents.
"What makes you different, makes you beautiful"
I love you,
Mummy
xxx
(Copyright - Karen Smart 2002)
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