Cowgirl Up!: What I Would Tell You

This past weekend we celebrated and rejoiced in Joey's first year of life. I'm working on going through the 400 photos I took this weekend and will hopefully be able to put it all together sometime this week because it was not just a celebration of Joey and his fighting spirit, but it was a celebration of community and of all the amazing family and friends who have been part of Joey's village.

In the meantime, I read a very insightful and moving article by Julie Keon of www.whatiwould tellyou.com.

She writes eloquently, honestly and beautifully about her daughter. Each of her posts are so powerful and they resonate deeply with me. With Julie's permission, I am posting her article called "What I Would Tell You". Other favorite's are "To Say or Not to Say" and "In Celebration of the Other Mothers". I hope you enjoy it as much as I do and I thank Julie for allowing me to post her article here.

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a
particularly traumatizing dentist appointment at the Children’s Hospital.
I looked up and saw you staring at us from across the waiting lounge. I
didn’t pay much attention, as I have grown accustomed to the curious eyes
of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack
of oxygen at birth, she changed the course of our lives forever. Perhaps, our
lives unfolded exactly as they were meant to — they just didn’t unfold in the
way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief
break before putting her through the next traumatic experience of the day ~ the
car ride home. Having cerebral palsy is the least of her worries but this condition
can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I
noticed you were holding an infant. It was difficult to know for certain how old
she was.

I knew immediately, though, that you were one of us. I knew that only recently
your life had changed drastically and you sat here in this Children’s Hospital
wondering, “How did we get here?” I should have recognized that shocked stare
because I once had it, too. And I assume that the man sitting next to you, looking
equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled
at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be
okay. I would tell you to dig deep within yourself because you will find the strength
and resilience somehow and it will surprise you. I would tell you to honour your
feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might
even want to run the other way. But I would tell you to hang on because he is
scared and he really doesn’t want to leave you. I would tell you to look after yourself
so that you can care for your daughter. Don’t underestimate the power of good
nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can
something that brings such joy also bring such sadness? I would tell you to
let people into your lives to help you. Our children really do require a village
to raise them. Access all of the services and resources available. Find
someone who can learn how to care for your child so that you can have breaks
and so you and your partner can go on dates… even little ones like a twenty
minute stroll outside holding hands, sharing wine on the deck or even catching
a movie.

I would tell you that you know your child best of all and no matter what you are
told by the doctors and other professionals who will be a part of your life, YOU
know the answers. You will teach them about your child. At times you will
question the validity of your intuition but after a while you will become profoundly
aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous
focus and unimaginable energy and it can burn you out and make you sick
when you least expect it. I would tell you to let your guard down along the way
so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the
road less traveled and you will feel very alone along the way especially in
the company of healthy children and their parents. Yes, you will feel very
isolated but know that we are here. Sometimes you have to look a little
harder but we are here. You can find us online,in support groups and
wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy,
neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on,
than a mother should ever have to know. I would also tell you to do some
research to inform yourself but be very careful not to be overwhelmed by
the internet and all of the information available to you. Having some trust in
what your child’s specialists tell you can be very grounding. Other mothers
and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it
but you are very capable and the rewards are great. You may never see your
child graduate from university, walk down the aisle or give birth to your
grandchildren but you will feel pure joy when your child laughs for the first
time at the age of 3 years and 8 months. You will celebrate the moment
when you connect with your non-verbal child. You will call your spouse at
work to tell him that she has gained 4oz. because weight gain is always a
struggle with our children.

I would tell you that you will have to witness procedures and surgeries and
suffering well beyond what any parent should ever have to bear. But, I
would tell you that you will be courageous and comforting because your
child will be experiencing far more suffering than any child should ever
have to endure.

I would tell you that your life will not resemble the life you had planned. It will
be as though you landed in Holland instead of Italy but after some time, you
will adjust the dreams you had and this reality will be normal to you. You will
dream new dreams.

I would tell you that you might find yourself staring death in the face during
close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms
and although you might make decisions to not resuscitate in the event of
a cardiac arrest, when the moment arises, you will panic to think that it could
all come to an end.

And I would tell you to not feel guilty in the darkest moments when you pray
to God to take your child if it would mean the suffering would end. This might
horrify you but know that your love for your child is so great that at times you
will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and
complex journey on all levels. We cannot expect anyone to get it. And I would
tell you that people — the cashier at the grocery store or your insurance broker
or even your hair stylist — will say stupid things like, “God only gives these
special kids to special mothers” and “God will only give you what you can
handle.” You will nod and smile but eventually you will look them right in the
face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a
Plan A and a Plan B. Plan A will be what you will do if your child outlives the
predicted life expectancy set forth by the experts and Plan B will come into
play if they do not. You will catch yourself casually discussing your future
with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed
and you least expect it like at a wedding when the father and bride have
their first dance or when you hear a birth announcement. It will also creep
up on you when you see yourself in a new mother who is just beginning this
journey.

I would tell you that you will recognize her because she is you from 7 ½ years
ago. And you will want to run to her and hug her and tell her that everything
will be okay. You will want to save her from the pain and the hardship and
the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital
and you see a new mom and dad who are just starting this journey, you smile
at them and walk by as they have their own path to travel and it will be
different than yours. It may be longer or shorter. It may be more or less
complicated.

I would tell you that her searching eyes are looking for some sign that she
will survive this. And you, smiling as you pass, with your child arching
all over your shoulder, will let her know that yes, she will survive this and
may even thrive.

Julie Keon

June 29th 2011