Tuesday, March 24, 2015

keep on keeping on

And a lovely 3.14 birthday it was.  Thanks for all your feedback on FB and elsewhere regarding Ralph's letter to Janneke. Birthdays for kids like Rachel and Janneke can be bittersweet for their families. We are keenly aware with each passing year the gap between Janneke and her peers. Though she did not come to me with a sticky fingered list of all her best friends that she wanted to invite, she was loved by and excited to see family and friends that stopped in. We ate pie all day and into the night. 

The favourite thing for our now-six-year-old to do is walk around in her walker, staring at her knees, laughing and then spit shining the floor. Spit looks so shiny when you let it sit on the floor - says Janneke.

During our March Break holiday week, we took a few days with Emily and Sophia to ski and sleep. This was huge for our family; we haven't holidayed without Rachel and Janneke overnight. Admittedly, it was a big deal to prepare for, and it was emotional to leave. We had a lovely time away and took a few photos...but concentrated on just having fun with the girls.

This pic was taken to prove that there can be peace among siblings while they share the same bench. It is possible.

I popped this photo of the four of us on Instragram and referred our big helmets, matching wardrobes with Ralph and I... but I wanted to add that there were a number of people who made it possible for us to ski and board. Not only did we have a system of care with VON and the Teeuwsen respite team, we also had equipment given or on loan; we were thankful for all the people that helped make these few days away possible.

We had some time to think while away and noted that not only do we see the gap widening between Rachel and Janneke and their peers, but we too feel as if that the distance between our peers and us also widens. For as long as Rachel and Janneke are in our home, we will need to find care if we want to go out or away.  Those of us in the special needs community call it being "forever parents." It is difficult not to be envious of peers that can slip away with or without kids - without much hassle or hiring a team of caregivers. We noticed how quickly we could jump in the car with Em and Soph when we didn't have to pack all the supplies and Murphy's Law kits (if this goes wrong, then this..).  We forgot a neck warmer and substituted it with a t-shirt.  That was about as complicated as it got. Refreshing. 

It was good to come home and have those memories to savour. Unfortunately, we had to deal with Rachel's return to pain, but as of yesterday, we've started another med that will hopefully help. Her body seems to attract rare bacteria which then requires hard-to-find meds that fit in a g-tube.  She was smiling on her way to school today, so that was encouraging!

April is coming...spring is coming... and soon we can all be outside! We are anticipating busy weeks at school for Ralph, Em and Soph (the Annie play!), and I am excited to be a part of the planning team for the upcoming women's conference at The Meeting House. At the same time, I am also honoured to be involved as a parent rep for the Niagara Region Special Needs Strategy which is looking at how the province's care providers help children like ours in the home, school, and therapy centres. Speaking of school and therapy, we will soon share news of what the next school year looks like for both Rachel and Janneke as that is reviewed by the Niagara Children's Centre School in the month of March.

To sign off, here's a shot of the girls riding the golden lift #50. 
Almost as good as Willy Wonka's golden ticket.


Friday, March 13, 2015

dear Janneke

Dear Janneke Grace,

On this night, in the middle of the night, exactly six years ago, your mother and I travelled to West Lincoln Memorial Hospital. This was the same hospital where, long ago, I was born, and where your older sister Sophia was born. We were anticipating your birth, and we were excited to meet the midwives - and finally meet you!

Months before you were born, we announced your imminent arrival via Facebook with the status "Ralph thinks Rachel will be a great big sister."

We still think that.

But your arrival and the six years that followed took your mother and I on a path that we were neither prepared for nor wanted to travel.

There was a full moon that night.  I remember noticing it as we were driving down the QEW to Grimsby.  It's funny how I remember the little details of that night vividly, and then there are other things I completely forget. I have trouble remembering the faces and names of the midwives, nurses, doctors, and paramedics we met on your first day. And we met many. But I remember where I was standing when I called Oma, Grandpa, and Mrs. Elzinga (Carolyn) to tell them about your birth.  The full moon was fading, and the sun was coming up as I stood alone on the sidewalk in front of the hospital, tearfully announcing your arrival before I lost the energy to tell anyone else.

It was a difficult birth for Mom...and for you.  For a moment, that night, we thought we might never get the chance to meet you.  You barely had the chance to take your first breath, but through the work of some wonderfully talented midwives, you survived a very difficult birth.  We waited to hear your first cry, so we would know everything was ok.

We waited all day.

Outside of a few moans, you never cried on your birth day.

Moments after your birth, the midwives placed you in a warmer in the birthing room. The midwives quickly called the doctor and were relieved when you started breathing on your own.  Your face was bruised and purple from a difficult birth, but the first thing that I noticed about you in the warmer was your hands.  Your hands were just like your sister Rachel's.

Mom was eager to know how you were, even though she was physically and emotionally spent.  She couldn't see you, so she asked me how you were doing. I could barely speak, but my first words to Mom after you were born were, "She's just like Rachel."

Not too long ago, I was asked, "What was the hardest day of your life?" I didn't have to think long: March 14, 2009.

While you were in the warmer, I remember saying to Mom...with tears in my eyes, that it isn't fair to you that I'm so incredibly sad on your Birth Day. "It isn't fair to Janneke. Parents should be happy when their child is born."

We did not have the same sadness with Rachel's birth as we did with you. But I was so incredibly sad, and that sadness still visits me from time to time.

We spent most of your first day trying to figure out what hospital you were going to next.  Later that day, it was decided that you would be transferred to SickKids in Toronto. Just before midnight, on your first day, we watched a medical transport team pack you up and put you in an ambulance bound for Toronto. Your mother and I drove the opposite direction and went home.

The next day, early Sunday morning, I got up and spent the day with you in Toronto.  Mom stayed home to rest. I spent most of that day beside your bed, talking with nurses, doctors, and specialists. At one point, when I was feeling very overwhelmed, I decided to go for a walk outside the hospital.  I didn't get too far.

I sat down at the corner of Gerrard and Elizabeth and wept.  It seemed like time was standing still, and I just cried and cried.  I'm not sure how long I sat there. Given the location, I am sure I was not the first person to weep at that corner, and I am sure I wasn't the last. When Mom and I have to take you and Rachel to Toronto, I always take a second glance at that spot.

This may sound funny, but sometimes I am saddened about my sadness regarding your birth. Your arrival, even though it brought me to tears, has profoundly impacted so many people. You bring a smile to the face of people you meet. The world would be a better place if more people could do that. Your presence has shaped your older three sisters and your mother and I in so many good and positive ways.  And you give the best hugs.

You are similar to your sister Rachel... but you are not "just like Rachel" like I thought you were on your first day. You have a mind of your own, and you are definitely a character, wandering around the house in your walker, without a care in the world. You are loved, and you bring grace and joy wherever you go.

I am not sure you will be able to read or understand this letter.  But I am happy you are a part of our family.

I love you to the moon and back, Janneke.

Happy Birthday.

Love, Dad.

To the Moon

O graceful moon, I can remember, now
the year has turned, how, filled with anguish, 
I came here to this hill to gaze at you,
and you were hanging then above those woods
the way you do now, lighting everything.
But your face was cloudy, 
swimming in my eyes, thanks to the tears
that filled them, for my life
was torment, and it is, it doesn't change,
beloved moon of mine.
And yet it helps me, thinking back, reliving 
the time of my unhappiness.
Oh in youth, when hope has a long road ahead
and the way of memory is short,
how sweet it is remembering what happened,
though it was sad, and though the pain endures!
-Giacomo Leopardi

Sunday, March 8, 2015

Sunday's musings

A number of years ago, Ralph and I rented The Diving Bell and the Butterfly, a movie based from a book that tells the story of a man disabled from an accident and trapped in his body.  He is unable to communicate and the camera angles bring you as the viewer right into his frustration and into his hellish isolation.

We couldn't finish the movie.

It was too close to our wonderings about Rachel. Since Rachel's birth, we have wondered if she feels trapped inside her body. That movie articulated what we didn't want to feel... what Rachel might be feeling.

Recently, I had a number of people ask me if I had heard the story of the young man, Martin Pistorius, who "woke up" from 12 years of being trapped in his body. Click this to read the story.  Yep, I had read the articles and interviews. When I read part of his hellish isolation included watching Barney reruns, my stomach turned.

You see, we THINK Rachel loves Barney. It seems to be one of the few video stars (is that what we call the purple dinosaur?) that catches her attention. She SEEMS to enjoy his music.

Or does she?

Caring for and raising children who are nonverbal comes with a set of unique challenges. You are forever guessing what catches their attention, what they like, what they don't like, what hurts when they are crying, and what they wish for.  My anger and frustration attempt to overwhelm the desire to understand - and sometimes I'm saying things I later regret.  And there I am, weeping over my kid because I. can't. keep. it. together.

Lately Janneke has been physically thrashing more in her bed and in her chair, swinging her legs around and throwing and banging her head back and forth.  We suspect that she is dealing with pain or an infection that we are currently treating... so perhaps the thrashing is due to pain or discomfort.

Or is she a kid who simply wants to move, tired of being constrained by her disabilities?

The last couple of times I've stepped into the room to check in with the nurse or take over from the respite worker, Rachel starts making her "moaning M" sound. I'm told she only starts this when I come into the room. She starts banging her hands, and when I come over, she pulls my head close to her. Her eyes widen and she starts hitting me and grabbing me. Is she in pain? Is something wrong?

Or is she a kid who wants to be held by her mom instead of someone else?

I wish for a translator to come and interpret; I wish for the ability to read their minds. It's in the wee hours of the morning when the tears come, sometimes in anger and sometimes in fear and sometimes in guilt... the realization that I don't fully understand my own kid. And never will.

What I believe carries us through those what ifs? is living as if Rachel and Janneke hear and understand what we say and do. We talk to them, we give time for them to respond - if at all - and we work through our anger and frustration by apologizing or talking through what we don't understand.

I also believe that my kids are understood by their Creator, one who intercedes for all of us when words fail or aren't possible. I believe that as complicated as they may seem, both Rachel and Janneke have purpose. Their purpose may not be as we think with career and identity - but their purpose may simply be to motivate the rest of us to care and be more caring.

So, we tentatively continue with Barney and Sesame Street episodes, watching the girls for any sign of displeasure. We try to find ways to bring variety to their day and work with their school teams to learn what makes them smile or squeal with joy at school. We try to provide the kind of care they need and, if they can someday verbalize back to us, the kind of care that they wanted.

We also have to learn to forgive ourselves, that we won't be perfect parents, and we will "lose our schmidt" from time to time. We can't waste the time we have right now; gotta do what our kids are challenging us to do -care and be caring. Learn to forgive and try again. Speak the truth with grace, and learn to laugh. A lot.  Especially at our huge fluffy dog who likes to eat surgical gloves. True story.