It’s a strange thing to be heartbroken and thankful at the
same time.
Recently, I was talking with a loved one about this state
that I find myself living in. They
couldn’t understand the grief I feel over Connor’s diagnosis. That this grief isn’t the same as
disappointment or the hope for a different child. This grief accompanies the unconditional love
I have for him yet grinds against it in ways almost too deep to express. I can’t blame this person for not
understanding. I don’t think I could
have fully until I was living it for myself.
When I learned that my child has severe disabilities – disabilities that
will alter how he functions in the world and may limit the goals he will
achieve – there was an immediate sense of loss.
This loss didn’t diminish my joy or love over this little baby, it just
changed things.
When you’re a parent, especially a new parent, you can’t
help but think about and hope for all the wonderful and exciting things the
future will hold for your child (and all the scary things, but mostly you try
to think about and hope for the good ones).
You think about their first words and selfishly hope it’s your name they
will squeak out. You think about their first day of school and how adorable
they will look with their very special backpack on as they scurry to the bus
,stopping only to give you a final wave and “love you, mom!” as they
board. You think about birthday parties
and play dates with little friends from school and hope your child finds
friends who encourage their sweet nature, creative soul and adventurous spirit.
You think about the tense hours spent sitting in the passenger seat of a car as
your teenager learns to drive and the pride you will feel when they pass their
driver’s test after only one try. As a
new parent holding your baby, you think about the day they will leave you to
continue on their journey of college or work.
You hope for love in their life and for them to find a special someone
to spend their life with and you hope for grandchildren that will live nearby
who can spoil with love and treats. You
even think about the days when this tiny child will take care of you when you
can no longer take care of yourself and you hope that he will do so with the
love, patience and faith that you have dedicated yourself to in raising him. All these thoughts and hopes plus so many
more fly through your brain and instantly this little person’s present and
future become your life’s mission.
And so, when you’re told that your baby has a condition that
will limit the possibilities or at least make them much, much harder to achieve
you are heartbroken. You grieve for the
little things that will be lost and for the big things that may be out of reach.
The strangest part though of this journey as the parent of a
special needs child is that while you may be grieving the things that will
never be, you rejoice in the beautiful creation that is your child and you
honestly can’t imagine them any other way.
Clara has said to me, “You know sometimes I wish that Connor didn’t have
all these challenges and problems because then things sure would be easier, but
then he wouldn’t be my brother and I love him.”
And so it is. Stuck in this weird
place of wishing things were different and thankful that they aren’t because
then you wouldn’t have this love in your life.
As reality sets in you start to think about and hope for
different things for this child you hold fiercely close to your heart. Some of these new things seem like mere
adjustments to previous thoughts and well within reach, while others are
distant hopes, but hopes nonetheless.
As we work through therapies with Connor, I hope that he can say words
that strangers can understand (and I still want him to say “mama” with clarity
and excitement!). I hope that Connor
will go to public school on the little yellow bus and wear the confident smile
his sister did as he waves good-bye to us.
I hope Connor has friends.
Friends who find delight in him and his interests. Friends who do not
pity him, but who gladly meet him where he’s at on his journey. I hope for Connor to be independently mobile
and to experience the freedom that movement brings. I hope for Connor to be self-sufficient enough
to leave home one day and make his mark on the world, to find joy in serving
others and to do something with his life that brings him joy and contributes to
his community. I hope for long lasting
love in his life. I hope he cares for
others in his life – family, friends, pets, colleagues, strangers – with
kindness, openness, patience and love. I
hope from these first days of his life to the very last, he knows, trusts and
loves the God that created and sustains him.
I am so thankful for the gift Connor is to my life, to our
family’s life together. I am heartbroken
that his life will be harder than most and I grieve the things he will not be
able to do. But that is the rollercoaster of parenthood, of life, really. On the good days you cling to progress and
hope. On the bad days…well, you pray for
tomorrow to be a good day.
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| Clara made this adorable playdough art of she and Connor. It says "Sibs Forever" on the top. |
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| Connor gives Clara the "GO!" signal |
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| So much fun on a snow day! |
