Tuesday, August 30, 2011

What I Would Tell You - By Julie Keon

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
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
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
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
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
© Copyright 2011 by Julie A. Keon. All rights reserved.

Julie and Meredith
Julie and Meredith

Saturday, August 27, 2011

One Year Later -- The 2 Percent Miracle -- Happy Birthday, Precious Son

If you had told me one year ago when I was anxiously pregnant, going to 4 doctor's appointments a week for ultrasounds and BPP's that we would be where we are today I would not have believed you.  From 12 weeks into the pregnancy with Joey we had been told that he would never survive.  That surely the hydrops (fluid around his body and organs) would take over.  If that didn't happen we were told that the septated cystic hygroma surrounding his head would eventually take over his entire body and consume him.  We were told he had a 2% chance of surviving the pregnancy.  We were told this at 12 weeks after undergoing a CVS (chorionic villus sampling) in which a long needle is inserted through the cervix and a tissue sample is taken to be tested.

Three days later, we learned from a phone call from a genetics counselor down at OSU that our baby was a boy and that he had an extra 21st chromosome.  Down syndrome.

We grieved hard.  Super hard.  Tears, anguish, sleepless nights. All over an extra chromosome.  We were told by a high risk doctor that termination would be advisable given the low chance of survival and all that Joey was facing.  I was told that terminating earlier rather than later would be better because if Joey passed away in utereo I would likely have to go through with a "delivery" of a stillborn because the pregnancy would never last past 20 weeks.  This weighed heavily on my mind for days and weeks.  I went to bed every night wondering whether or not he was still alive.  Instead of planning a nursery I thought about planning a funeral.  I wondered, "Do people have funerals for stillborn babies?"  I asked myself how anyone could possibly ever have the fortitude and strength to do such a thing.  I wondered how I would ever explain such an event to Tommy.  I thought surely I would die before this baby would.

I spoke to a friend who had gone through an abortion many, many years ago.  She told me that she thought of that baby every day of her life.  I will never forget that conversation and how it sealed what I already knew and believed in my heart-- that Joey deserved a chance to try and survive.  That whatever was going to happen to him was going to be God's choice-- not mine.

Another friend encouraged me and said, "You know what-- 2% is still a chance."  I was stuck in the grieving and the anger and this also turned things around for me.  She was so right--2% was still at least a chance and doesn't everyone deserve a chance?

I went throughout the pregnancy longing for a "normal" pregnancy.  Longing to be excited and not to have so much weighing on my mind.  Every day was a struggle, but I had a full-time job, a husband and a little 2-year-old who needed me to be Mom every single day.  I didn't have a choice other than to put on a brave face and pray for the best.

When we finally the 24th week of the pregnancy I felt more relief than ever.  No longer would "termination" even be an option for people to bring up anymore.  

Relief quickly turned to a new despair when we found out there was structural defect in Joey's heart.  For the remainder of the pregnancy we were followed by pediatric cardiology as we watched and waited to see what his heart was doing.

At 28 weeks we learned that I had gestational diabetes and that Joey had a new symptom.  He was diagnosed with "fetal ascites" as fluid was building up in his abdominal cavity.  Was this related to his heart?  Where there bowel issues?  We didn't know.  This is when the 3-4 doctor's appointments per week started.  There was also talk of delivering during this appointment and I went in to get the steroid shots to try and speed up the development of his lungs, but eventually one of our doctors decided to wait a little longer.

As the pregnancy went on I saw other people be pregnant and they looked so happy.  So carefree.  I would never wish this kind of stress on anyone, but I longed for that kind of joy and happiness.  I wanted "normal".   I've gotten comments this year to the effect of people saying, "Well, you probably won't have any more children because you wouldn't want to go through this again."  That took me by surprise and yet it didn't.  Is there a higher risk of us having another baby who has Down syndrome?  Yes.  Our statistics are 1 in 100.  We now have a 1% chance of having another child with Down syndrome.  I've already decided that if this is something we ever pursue and anyone ever asks if we are worried I will say, "No way! I'm worried this child won't have Down syndrome!"  And I mean it.  This is our new "normal".  I thought I wanted "normal" so badly, but we are living our normal. 

When we finally went into the hospital, one year ago on August 27, 2010 we were surrounded by family and loved ones who were at the ready no matter what happened on this fateful day.  We had the "luxury" of a prenatal diagnosis, so we never had the disillusion of a "perfect" baby.  Instead we had weeks and months to prepare for a baby we were told would never survive.  We had time to "accept " the diagnosis.  We had time to prepare.  For most of the pregnancy I resented the early ultrasounds and early definitive diagnosis.  I resented not being able to celebrate and enjoy being pregnant.  It took quite awhile to realize that this pregnancy was "not about me".  My dear friend, Brenda, who passed away not even a year ago from cancer, used to wear a shirt to our Wednesday night tennis that said, "It's all about me."  It was so irreverent and so funny because that is the opposite of Brenda's life.  Her life was spent apostelizing about God.  It was quite honestly-- never about Brenda.  Just like Joey's pregnancy and life-- it has never been about me-- it has always been about him.  Just like our amazing new friends Meagan and Matt (who just happen to have amazing twins Connner and Casey who have Down syndrome) say in their email signature "God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome doesn't TAKE a special family, it MAKES a special family...."

Joseph David wasn't able to breastfeed-- ever.  He still is on "thickened liquids".  When he was born he spent almost 5 days under the bilirubin lights and it was torture.  I wanted him in our room and with us.  We had worked so hard to get him here and now he was stuck for about 22 out of 24 hours a day under lights far, far away from our room. 

In the meantime, as hard as we grieved-- we celebrated.  I mean we celebrated hard.   To this day, I am pretty sure the maternity floor never knew what hit them!  

We had champagne, chocolates, gifts for all nurses and doctors and everyone in between.

If this baby was going to survive, I was bound and determined to celebrate and SHOW the world that Down syndrome did not mean a thing to this family.  Extra chromosome or not, this is how we roll!!!  We truly and sincerely wanted to set the "tone" for our family and how we wanted to exist.  Was Down syndrome a defining moment in our lives.  Yes.  Does it define us as a family or Joey as a human-- hell no!  

Young and old-- from across the country-- we celebrated.  Mr. 2% had finally arrived and despite the most dire of predictions and expectations, he spent only a brief time on Oxygen, he had no immediate surgeries and the jaundice and 5 days under lights were his only major issues for the time being.

After such an incredible year, we now have an amazing one year old son.  In just the short twelve months since he arrived via c-section at 37 weeks (keep in mind that Thomas Henry came at 42 weeks via c-section) so much has happened.

He was diagnosed with aspirating.  He was diagnosed with hypotonia.  He was congenital heart defects were confirmed and then on June 8th he had open heart surgery to repair them.  He has had plagiocephaly and torticollis.  He was diagnosed with Nystagmus.  He wore a helmet for three months.  He had 6 months of $5,000 RSV shots and then got RSV in month 6 1/2.  He has been to doctors appointments in 3 different states.  He has started sleeping through the night.  He has started saying his first words-- "Ba Ba".  He started sitting on his own.

He taught us what living is all about and what true love means.  He has not only brought us together as a family, but he has shown us what being a family truly means.

He has helped us to be grateful for every day.  He has shown us what being a parent means and he has taught us to be grateful.  He has been a fighter and a lover every single day of his life.

He has made us who we are.  

Please don't ever, ever be mistaken.  We are not special or extraordinary parents.  We are just people who were blessed beyond belief with having an extraordinary child.