Friday, December 14, 2012

So Many Words for Something that Defies Them

A lot of words have already been written about what happened in an elementary school in Connecticut today, and millions more will be written in the days to come.  I can already see the documentaries, the commentaries, the editorials, and one day probably a TV movie.

The shootings today will become a rallying cry for gun control, for homeschooling, for better school security. Everyone will have an opinion on why it happened, on how it could have been prevented, and on what we need to do to stop it from happening again.

But for some families in Connecticut, it will simply be the day that the precious life of a child they carried in their wombs, held in their arms as newborns, nursed through colds and flus, proudly watched go off to school to learn and grow, loved with every ounce of their being was coldly and cruelly murdered.  Their children.  Their babies.  That part of the heart, they say, that walks around outside the body.  Dead.  Gone, forever.

No words, no opinion pieces, no dissecting of the events leading up to the shootings or of the possible ways they could have been prevented can ever change that.  Those innocent children are never coming back, no matter what we do.

Today, as I met my son at the Kindergarten door with tears in my eyes and held him, confused and trying to tell me about his day, close to me while I took deep breaths, I thanked every God and Goddess I could think of for that chance while parents across the country were somehow trying to come to grips with the reality that they would never do that again.

I know how I feel about the issues that surround this unbearable event, but right now they don't matter.  Right now I shed tears at even the thought of the pain parents just like me are feeling tonight.  They, like me, kissed their kids goodbye and were sure they would see them right after school like always.  But unlike me, they were wrong.

Whatever happens in the days to come, we must all try to remember that unspeakable truth.  I won't be one of the people who gives opinions or advice for what needs to be done.  I can't.  It's not that I don't think something must be done, or that something must change, but that I am above all else a mother who grieves right now for other mothers whose grief I can't begin to imagine.

While events like this can and must influence us to change for the better, we can't lose sight of the basic, human horror that happened today and of the lives that will never be the same.  Eventually, all such tragedies slip into the past, and most of us can put them behind us.  Some people never can and never will.  Most of us will see the documentaries and watch anniversary specials recounting the horror and feel sad all over again.  But those families who lost loved ones today will recount the horror every day, face the heartbreak every day.  It won't ever be over for them.

Children are dead.  It could have been any one of us.  

All else pales before that realization.  So much will be written, and yet, that's all there is.  Children are dead.

Saturday, November 3, 2012

The Cost of Loving Kona

On Tuesday our dog, Kona will have surgery.  Again.

About a year and a half ago she had surgery for a torn ligament in her left knee.  The result of favouring her right knee for so long is that she tore the ligament on that side as well, and now can't walk on it.

When Kona was 5 months old she ate wood chips, because lab puppies are really, really dumb.  Cute, but dumb.  Whatever blood she is mixed with didn't offer much in the way of intelligence boosting.  She blocked her intestines and needed surgery to clear it.  A few years later she had a growth removed from her tongue that thankfully turned out to be again.

As of this surgery, we will be into our little pound puppy to the tune of nearly $10,000 in surgeries alone.  That doesn't count her regular vet bills, food, and all the other costs of keeping a nearly 90-lb chocolate lab.

When I tell people those numbers, I get looks of absolute amazement.  Many people comment that it's a crazy amount of money to spend on a dog.  Yup, it sure is.  We've dubbed her the world's most expensive mutt, and at nearly 7 years old she's still got plenty of years to continue emptying our already pathetic savings.  So why do we do it?

Kona came to us at 3 months old when we were going through fertility treatment.  We got her from the humane society where she had already been through two homes and sent back, for some unfathomable reason as she was already the sweetest dog on the planet.

Kona the day we brought her home

Yes, I admit she was a substitute to fill the hole in my heart from all of the failures to conceive a child.  She was my first baby and her fur absorbed many tears as month after month went by without success.  When we did finally have our first baby through IUI, she was immediately his best friend.  No jealousy, nothing but love for that screaming bundle of what to her was surely dubious joy.

Nolan was born with a cleft lip and palate as most of you know.  He couldn't breastfeed directly as he could not form suction.  So I pumped for him, every three hours, all day and all night.  Who was awake with me, lying on my feet as I sat half awake, delirious with exhaustion attached to the milking machine?  Kona. She was there through Nolan's surgeries and the long nights of his recovery.

Kona with baby Nolan

Then came Aaron, a preemie at 29 weeks.  Again with the pump, and there was Kona, with me through it all.  We got through those times, the dark years we like to dub them, of two under two and so little sleep it's a wonder we survived at all.

The kids grew, and as they did Kona put up with all kinds of baby and toddler-related torture.  Ear pulling, eye-poking, tail-grabbing, attempting to ride her like a horse. She never growled, never snapped at them.  She put up with it with mostly good humour and the occasional baleful glance in our direction for assistance.

Kona after surgery in 2011, wearing the "hemorrhoid pillow of shame".

Kona is just a dog.  Yes, you could say that.  Just a dog, whose needs in life are simple.  Food, a warm place to sleep, a few squirrels to chase, and to be with her people.  She loves her people with that basic, uncomplicated love and loyalty that only dogs are capable of.

She deserves that love and loyalty in return.  $10,000?  Yeah, it's a lot of money, especially to people like us who live basically paycheck to paycheck.  But would we take that money back in exchange for Kona if it was offered to us?  Nope.  Kona has been there for me, in the only way she knows how, and I am going to be there for her, as best I can.

People either get this and feel the same way, or they just don't get it.  I know I can't make them understand, but I felt the need to say it.  The cost of loving Kona is small compare to the joy of loving her, and having her love.

Sunday, September 9, 2012

A Campground, a Purple Heart, and the Kindness of Strangers

We meet people every day by chance.  Sometimes those people, through who they are and what they have faced, can impact you in ways you couldn't have imagined.

On Friday evening, we pulled into a campsite as dark was falling at Silver Falls State Park.  We had booked at the last minute, and instead of getting the usual out of the way private site we prefer, we got a site on the inside of the loop, where your neighbours are so close you might as well be camping together.  The people next to us were an older couple camping in an RV.  They helped us back our trailer in and helped me move our picnic table while Shaun was occupied with something else.  They played light tag with a flashlight with the boys while I ran around setting up in the dark and getting some food ready.

We wound up chatting with them quite a bit, since we were so close to each other there was no avoiding each other.  They were down from Snohomish, WA, visiting their daughter who is attending law school in Salem for her birthday.  Shaun wanted to see the inside of their RV, curious as to how it was laid out.

In one window of the RV was a photograph of their son.  The other displayed a Purple Heart.  A US Marine Corps flag waved from the front.  I had seen the Purple Heart but thought perhaps the man was a veteran.  I was wrong.  They were the parents of Cpl Jeffrey Starr, a Marine killed in Iraq on Memorial Day, 2005.

After his death, a letter was found on this computer to his girlfriend.  It made him famous, and President Bush even read out a portion of it in a speech.  They told Shaun this story, and he relayed part of it to me later.

You can read the whole story here.

The loss of a son is a sadness I can't begin to imagine.  Under these circumstances, and followed by that sort of press attention - well, it's all so far beyond my comprehension.

They were wonderful people, incredibly warm and friendly, eager to help and treated our kids like they were their own grandchildren.  They clearly raised an amazing child.  My heart breaks for them that he was lost this way.

Last Memorial Day I had trouble expressing to my kids what it was all about.  I won't anymore.  I will tell them about this family.  They are now the face of the war to me.  I hope to contact them again, because as we sat under the towering Oregon trees, I couldn't find any words for their loss.  I'm still a little lost for words.  I am hoping will I will come up with some way to express to them how that chance meeting impacted me.

All I can think to do is to share this story, and hope that it impacts you, too.  And that not only he will be remembered, but the parents who loved and nurtured him and are left with a hole in their hearts and lives will be remembered too.

Wednesday, September 5, 2012

Just a Tiny Bit of Cleft Awareness

I'm not much of an awareness person.  I don't wear coloured ribbons and really don't believe that sharing an image on Facebook is going to cure cancer.  Or anything else for that matter.

But there are some things that can and should be passed around.  There is information out there that could prove very helpful to mothers preparing for the arrival of a new baby, or facing an unexpected diagnosis.  I wish more awareness campaigns would focus more on getting actual information out there and less on using guilt to make people hand over money.

It being Craniofacial Acceptance Month, I have decided that although I don't believe awareness will in any way help children born with clefts like my son, it might help a few parents to deal with the news and people deal with those parents.  So here is my own contribution to said awareness.

10 Things To Know About Clefts.

1. My son was born with a cleft lip and palate.  That's palate, not palette, he is not an interior designer with space issues.  It means that his lip and the roof of his mouth did not fuse properly in the womb.

2. Clefts are among the most common birth "defects" around the world, and yet almost no one seems to know it.  Approximately 1 in 700 births involve a cleft of some kind.

3. I hate the word birth defect.  My son is not defective, thank you.

4. The cause of most clefts is unknown.  I did not drink, shoot heroin, or sniff glue during my pregnancy.  While some clefts are hereditary, they often come out of nowhere as a surprise to the parents.  Most of the pregnancies were totally normal.

5. "Hare lip" is an antiquated and very offensive term for a cleft.  Please do not use it.

6. Cleft repair is an ongoing process involving multiple surgeries starting in infancy and long-term treatment by a team of specialists.  It's not something that ends once it's "fixed".

7. Children with repaired (or unrepaired) clefts may have trouble hearing or speaking.  That doesn't mean there is anything wrong with their brain function.

8. Children with cleft palates usually can not breastfeed because they can't make suction.  They need to be fed with special bottles that work on compression.   Breastfeeding such a child is a long and difficult process involving a lot of quality time spent with a pump.

9. It's ok to ask questions about the cleft.  Parents don't mind talking about it.  We know it's visible.  We'd rather you ask than pretend you didn't notice and try not to make eye contact.

10. Please don't ever tell a mother who has just been told her baby has a cleft how it "could have been worse".  We know it could have been worse.  We know there are a thousand scarier diagnoses.  We are grateful that, unless the cleft is associated with a syndrome, our child is going to live and has a future.  But imagine how you would feel being told that beautiful baby face you were dreaming of when you saw that positive pregnancy test all those months ago has a hole in it.  Yes, it could be worse, but right in that moment, it still feels awful.

That's all.  I hope you are all feeling much more aware now.  Carry on.

Thursday, August 23, 2012

Memories Aren't Pictures

There are no pictures of my son on the day he was born.  He came into the world at 9:30 pm on a Sunday and was whisked away to the NICU.  I saw him only briefly, clawing at the mountains of blankets that were on me because I was shivering.  This tiny form, who was blessedly, thankfully, crying - so I knew he was breathing.

I didn't see him until after midnight.  So I had no opportunity to take a picture of him on the day of his birth.  He was almost 24 hours old before I was allowed to hold him, and then only for a moment.

I couldn't really see his face because of the CPAP that was helping him breathe.  He had to be placed right back under the heat lamp, like someone's dinner order being kept warm until the server came to get it.  Plastic-wrapped.  Blue lights for jaundice.  Preemie diapers folded down nearly in half because they were just too big.

I didn't cry.  I went back and forth between my room and the NICU, calm, collected.  I was sent home on the second day.  There was no reason for me to stay, and I had a 14 month old at home who needed me.

I came back for my follow up appointment.  I sat in the waiting room with all these women who had their babies with them.  I was alone.

That's when it hit me.  Four days later.  That my baby wasn't coming home for a long time, I had no idea how long.  That I couldn't hold him whenever I wanted to, couldn't try to feed him, couldn't bathe him or introduce him to his brother.  That is when I started crying and thought I would never stop.

But I did.  Stop crying.  There is really nothing so painful that we don't eventually stop crying.

They moved him from place to place in the NICU.  Finally downgraded him to the "feeding and growing" area, where things were less intense and the sound of alarms announcing "YOUR BABY ISN'T BREATHING" came rarely if at all.  I watched other babies come and go, saw their proud parents take them home after a few days, a week or two.  I waited.

I spent my days with Nolan and my nights with Aaron, my family divided.  It was seven weeks.  It felt endless.

His day finally came.  We took him home and finally, he met his brother.  He got fat.  He got big.  He learned to walk and talk and no one would ever have known that he was a preemie.

He is four now.  He's the sweet, reserved, quiet child who is the image of his father.  With a little less facial hair.  His beginning doesn't matter anymore, except that now and then, on his birthday, I realize there are no pictures of his true birth day.  And I remember all of that day, every moment, crystal clear.

Now I can hug him whenever I want.  So I do.

Happy Birthday, Aaron.

Saturday, August 18, 2012

On Nights Like Tonight

So Mommy has had a few drinks and is listening to Matthew Good. Alone in the house with two little boys sleeping, Shaun out with friends.  Blame the wine, blame Matt, but I am feeling sentimental, and I have something to say, interspersed with Matt Good's words.

It feels like time to let it go
It feels like time to break or show

A week from today a good friend and I experienced one of the craziest weekends of our lives.  It locked us together for life.  She will not be named here for her own privacy.  But she knows who she is.  She lost a child, and I delivered one prematurely.  Four years have passed.  But that weekend is as clear as ever in my memory.  Sometimes I still can't believe it is real.

It feels like just another day
Like one more dead town's last parade
Like we're taking pictures of a tidal wave

Aaron turns four on the 24th.  The miracle child I never expected.  The preemie who became the sweetest child I could ever have imagined.  The living, breathing proof that hope is worth it.

Recently a friend of a friend lost a child to a terminal illness.  On Monday she and her children will release balloons into the air in his honour as his memorial service goes on in another place.  I can't be there.  But my heart hurts for them, and I hold my children tight as I offer my own form of prayer for that family.

It feels like time ain't time at all

There is so much to remind me of how blessed I am.  Beyond words, beyond understanding.  As my family faces a difficult time I can only remind myself of what we have.  My two beautiful, miraculous boys.  The husband I could only have made real in my dreams, who is mine in reality.  The family and friends who love us all.

I can only bow my head and let my heart break for the loss of others.  I can't imagine the loss of a child to cancer.  I have miscarried but can't imagine making the heart-rending choice others have faced.

Take me out, lay me down
Let the dirt fall all around me

I won't blame it on Matt Good or wine.  I will try to internalize this understanding, as I send out love and my words, which mean so little in the end, to all who have lost a precious baby, and all who live every day in fear of losing one.

Baby, ain't it good to be back home?

May I never forget how fucking good I have it.

Love to all who have lost.

On nights like tonight, when no one's around
I turn on the record, the record I found
When I was a kid, and the world was a town
And Heartbreaker weren't nothing painful

Just sit tight, and I'll make my way to you
I'll find a way to get to you

Wednesday, June 13, 2012

What Nolan Has Taught Me

On Saturday my first baby will turn five.  In the past five years, we've been through a lot, from his surgeries to the birth of his preemie brother to the challenges of having "two under two" - or as we here in the K house like to call them, "The Dark Years".

My baby

Nolan is a spunky, smart, crazy, sensitive, amazing little boy who reminds me of myself on a daily basis.  But as much as he is like me, or maybe because he is like me, he has taught me a lot.  About life, and about myself.  About the little things and the big things.  About who I am and who I want to be.  In honour of my little boy's five years on this planet, and in looking forward to the next 5 and more - I want to take a minute to acknowledge the Things I've Learned From Nolan.

1. Sleep is Not Overrated.  It's not.  God, it's really, really not.  Oh Nolan, my terrible sleeper, my up at all hours, tiny bladder just like mommy boy...I have learned from you that sleep is something I love, need, and miss.  It's also something I would give up only for you.  And maybe your brother, but he doesn't test that theory much.

2.  A Smile Can Break Your Heart - and Repair it.  I will never forget the day I found out about Nolan's cleft.  I was devastated.  I mean completely destroyed.  I cried for four days and ate my weight in cake and ice cream.  I told my parents I wouldn't take any baby pictures of him lest people think he was ugly or make fun of him.  All I could think about was the day his smile would be repaired and people would stop staring.  When he was born, I found out that he was perfect.  I couldn't possible have cared less about the cleft.  And on the night before his surgery, I lay awake pondering how to call it off and somehow live with the cleft.

And then he came out of surgery.  And I cried because I didn't recognize my own baby.  His face was so different.  I had lost the smile I loved.  And time went by, and his unique new smile filled my heart again.  Today I can hardly remember how he looked before, but I know that his smile has broken and mended my heart many times over, and it is the most precious part of him.

Right before surgery

3.  You Can't Have Too Many Hugs.  But you can sure as hell try.

4.  Some Baby Terms Should Be Kept.  We'll never stop calling restaurants "The Hungry Store".  It's just too brilliant.

Turning One!

5.  There Is Now Someone More Stubborn Than Me.  Yes, Nolan, you are the most stubborn person I have ever met.  Able to amaze other parents with your sheer stamina when it comes to a tantrum or attempting to get your way.  More stubborn even than the reigning champ of stubbornness - your mother.  I hope you'll outgrow it, at least a bit.  But you probably won't, so really, I hope you learn to use it for good instead of evil.

6.  I Am Loved.  Because you tell me so, a dozen times a day, most often when you are sitting on the toilet, I can never forget that some little someone loves me very much.  And that's a pretty good way to go through life.  I could lose the toilet part though.

7.  The World Is Amazing, and Police Cars Are Pretty Damn Cool.  Every parent says it - that seeing the world through a child's eyes give you a whole new view of things.  It's true.  And as Nolan's mom I have learned much about the inherent coolness of police cars, fire trucks, and ambulances.  I have learned that bubble bath is the single greatest invention of all time.  I have seen everything again from knee-height, and the world is crazy, amazing place in your eyes Nolan.  And best of all, I am an amazing person in your eyes.  Thanks to you, I can see myself that way.

8.  Every Challenge Can Be Overcome.  You, the poster child for cleft repair, came into the world with a facial defect that could have ruled your life.  But you speak as clearly as any other five year old and although the signs are there - you simply don't care.  You never thought there was anything to overcome, and so you simply did it.  And though I still worry about your future, as every mom does, I know that you will overcome each challenge you encounter.  And you have taught me that I can overcome my challenges too.  That no matter what waits on the other side, win or lose, we are who we were always meant to be.  Challenges get us there - and even if things don't come out the way you wanted them to, you have still overcome simply by stepping forward and just doing it.

9.  It's Ok To Laugh At Farts.  Yup.  They're funny.  And having little boys gives me license to giggle.

10.  Life is Short.  Too short.  Already my boy is five, and his brother growing up fast behind him.  The years will pass me by and leave me looking back as I am now.  And one day, you won't be here anymore - you will be off living your life and I will be sitting here ruminating on the boy you are now and how you became a man.  Life is too short to worry about making the bed or having a perfectly clean house.  Life is too short to skip a trip to the ice cream hungry store.  Life is too short to get out of bed on a rainy day when you can snuggle with the ones you love.  Life is too short not to laugh at silly jokes and make silly faces.  Life is short, and for the short time that I am here, I get to be with you, Nolan.  I get to be your mom for this short time on the planet.  That's a good thing to be.

Happy 5th Birthday Nolan.  Thank you.