Tuesday, March 30, 2010

patience and perspective

Janneke enjoying (or at least tolerating) the swing before she caught her cold.

Rachel with her one of her favourites.

Sitting in a waiting room gives me time to think. Today’s “think” was about two hours at Mac. I thought about patience and perspective -two things that disappear the longer I sit and wait!

So much of my day hinges on perspective. It is amazing the range of emotions in just one day. For three hours, I can feel as though everything is manageable and almost normal. Then something happens that is beyond my control (big or small) -and my perspective shifts so quickly from managing to feeling overwhelmed.

I have been told that God never gives you more than you can handle. That phrase is a misunderstanding of a verse in the Bible, a misquote that only brings more guilt when you already feel like giving up. It frustrates me when people say that.

And there is patience. I struggle to be patient while waiting for some kind of answer from a doctor or a clinic. I have to be patient with my older daughters when sleep has deprived me of the energy required to answer numerous questions about Jupiter and Saturn, the population of South Korea, and when the trampoline will be set up.

This past week, both Rachel and Janneke have been fighting colds. When they are dealing with colds, they have trouble with breathing, swallowing, etc. It’s not as if they are in respiratory distress, but they gag on their mucous and have a lot of stomach pain. The nights are long with little sleep.

That certainly affects my perspective and my patience. Because they are already medically compromised, I become extra anxious when they are crying or uncomfortable. I pace between calling the doctor and waiting the night out.

It is crazy how quickly we can lose our perspective and patience. I think it’s a control issue. I want to control exactly how things go and where things go. There’s that old poem for parents with children of special needs - about packing and planning for a trip to Italy, but you end up in Holland instead. The parallel is obvious: a child with special needs is not what you planned, but the experience will still be a gift.

I’m Dutch. So, I should be okay with going to Holland. Most days.

The expression “to be grounded” refers to maintaining a stable perspective. Well, my perspective is best kept above the ground. For when my eyes are lifted up, I can see that the whole world is in His hands. It is His plan, not mine. In this world, there will be trouble, but it is not to last. Easter reminds us of that victory.

The patience? Well, coffee can bring me a temporary fix, but I must also remember I can’t do it on my own strength. When I get so wrapped up in myself and my troubles, I forget that it isn't about me. Life is bigger than my own four walls. Patience comes when I admit that. But it is not easy.

As for sitting in the waiting room earlier today - well, the visit to Mac resulted in a wait-and-see with Rachel’s kidneys. No cause for concern, for which we are thankful.

A blessed Easter to you all.... enjoy the spring weather and the sunshine. We certainly will; I’m counting on the sunshine to chase away the colds and flu viruses. : )


My two GEMS - we were at a girls club event through our church.

Tuesday, March 23, 2010

after the birthday

The cake has been eaten. There are still a few balloons around, and Janneke is enjoying her gifts from her big sisters. Thanks for your kind notes and cards!

It’s been a busy week. Last Monday, Rachel had her growth hormone testing; we are waiting to match the results of tests with her upcoming MRI. The tests went smoothly, and we were thankful for the portacath, making the bloodwork and IV access so easy.

Emily and Sophia had a great day while we were at the hospital with their friends Clay and Gavin who live “in the woods”. They love making a fort in the woods, roasting hotdogs for supper over a bonfire, and bringing home tons of mud. Ah, to live outside city limits!

Rachel did give us a scare a few days later that resulted in a trip to the ER. She woke up with what appeared to be a urinary tract infection -or so I thought. The doctors were concerned, and after more bloodwork and an ultrasound of her kidneys, they knew it wasn’t an infection, but they weren’t certain as to what was wrong. We think her body was reacting to an infection she had two weeks ago, but we aren’t sure. She is due back to Mac tomorrow for another ultrasound of her kidneys and a consult next week with a nephrologist.

In the meantime, we also had her transition-to-school meeting. Funny to be sitting in a room with seven other adults, all planning Rachel’s next school year. We will know more in May about where she will go in September. Rachel was also a part of the meeting, and that helped the others visualize her in a classroom. She grew bored of the adult conversation quickly and amused us with her chirps.

Janneke has a cold right now that complicates her sleep and breathing, but she seems okay. Her cough makes her sound like a smoking opa, so I pulled out the suctioning machine last night; it was encouraging to remember that it has been a long time since we had to use it.

Sometimes, without warning, our circumstance overwhelms us. It is difficult to maintain balance, so we took a day last week with Em and Soph and went to Toronto. We visited the art gallery (AGO) with the Elzingas, and we enjoyed walking around the downtown streets and subway. It is always odd to be out without R and J, but sometimes, that just gives us a chance to breathe a bit deeper. Funny how on the way home from TO, we both felt the tension and stress return to the back of the neck and head.

Tonight, I met with a parent group to discuss the upcoming provincial budget: Do we really think the province will budget for CTCs (children’s treatment centers)?! Here’s hoping. We’ll find out Thursday.

After the official part of the meeting, we discussed as parents the importance of connecting. When you are a parent to a child with special needs, there is the very real possibility of slowing losing touch with a larger community. Over time, the special needs look less cute on the kid, and the “strange” behaviours become more obvious. It reinforced the importance of sharing our stories. Not to bring pity or guilt but to stay connected with each other, especially with family and friends who do not have children with special needs. Maybe the shared stories will bring a greater desire for acceptance of our children as they age, and everyone can embrace a new normal.

Rachel loves to play the piano with her feet.

Janneke and Rachel playing soccer with their favourite textured ball.


Saturday, March 13, 2010

happy birthday, janneke!

So, it’s been a year. With this blog. With our family of six.

Why blog? Our original intention was to keep family and friends connected when Janneke was born and in hospital. From the updates, the blog turned into short stories or weekly blurbs. It has become therapeutic for the author, at times. Yet, there is sometimes a sense of “why bother” or an urge to qualify the blog by saying that we are not trying to draw pity or attention. The truth is, there are many stories out there.

Our blog does not want to become bigger than what it is, our connection to family and friends. There also a bit of distance for us in what we write. We respect our daughters’ privacy for certain things, and the matters that lay deep in our hearts might remain there. That’s just who we are.

Yet,there has been an urge to write this post, for whatever reason. To share a part of Janneke’s birth story -and I say this, sensitive to those who cannot birth a child. But, it’s part of the story behind our first post. It’s the experience of having our world turned upside down.

It was early Saturday morning, just after midnight, and Rachel had been up again. At that hour, on March 14, 2009, I walked to her crib. As I spoke to her and changed her, I felt the baby inside of me shift and then push down. An intense contraction followed, and I knew it was time. Just like on TV, I had to wake up my husband and say, “It’s time.”

How excited I was! Our baby, our Janneke Grace - for we knew she was a girl and we had named her - was coming, and we were excited for a normal, celebrative birth. Normal. Wouldn’t Ralph’s sisters be thrilled with a niece named after them! I had been told a week prior, March 5, 2009, with an ultrasound that our baby was looking normal, healthy, and about 7 lbs. Normal.

We connected with the midwives at the small hospital in Grimsby. It was a full moon, and I remember having to walk through the middle of a conversation between four drunks in the ER. Excuse me, I’m in labour.

In those quiet hours in the labour/delivery room with our midwives, there was a feeling of genuine joy. These women were just as prepared as we were to welcome a healthy normal baby girl - somehow this moment would bring resolution from the trauma of Rachel’s birth.

But as the contractions intensified, the pain changed. No longer was this pain familiar. This was a different pain, and in my heart of hearts, I knew something wasn’t right.

And it wasn’t right. As I laboured, tears came in anticipation of something dark and sad. I was losing this baby girl. She was not going to make it.

The tension in the room was obvious. Even though I felt as if I was floating above the concerned women and my anxious husband, I knew they were worried.

Then the tension rose to a whole new level, the pain grew to yet another level, and I was repositioned in a matter of seconds by several sets of hands - and then there was nothing.

Our baby, our Janneke was gone from this world. Right? For that is what I felt.

But no. She was alive, all 9 lbs and more. She had been held in the birth canal by her shoulders, but there she was, lying on the warmer. Ralph leaned over to see her - and then the look on his face as he turned to look at me.

Just like Rachel. Not normal.

God? Where are you?

I’m here. Even though you walk through the valley of the shadow of death, I will be WITH you.

As the midwives examined Janneke and prepared to call in reinforcements, Ralph and I faced each other. Another daughter with special needs? What would we tell Emily and Sophia? I wanted to call Aunt Jean. I wanted a mom to wake me up from this sad dream.

Janneke was placed in my arms. She was dark purple and moaning. Truthfully, she did not look very alive. I looked down at her and willed her eyes to open, her moaning to stop, and for her to be normal. Not so.

Big swallow. We would love her even though she was not at all what we thought she would be. Here we go again.

We were thankful she was breathing on her own. That meant we could hold her.

Within minutes, the list grew of her imperfections. The more she was examined, the more the docs became concerned. Sadly, we knew the lingo, and we knew the path we’d be taking. We could only hope for a NICU within driving distance.

I remember being put in recovery room with two other new moms - with their first babies. There were balloons, phonecalls, and many excited visitors for those normal babies. I wanted to shout at them, to tell them it wasn’t fair that I had to share their room and listen to their jubilation. Yet, who was I to take away their joy? I did not appreciate their quiet whispers in my directions, particularly when they saw my dark purple moaning baby girl. But, I couldn’t blame them.

Thankfully, our midwife was able to secure a private room. With a full moon, there was a line of women in labour. But, with all the busyness, I was given a quiet private room. A nurse was called from another hospital, assigned just to me and to Janneke. So, this wasn’t a dream. Not normal.

And Janneke’s story began. A new normal. Our days now include tube-feedings for two kids, stretching, massage, physio therapy, food therapy, and any other therapy that might help stimulate our girls’ brains. The days are structured by a typed schedule, and it isn’t unusual for the washing machine to wash bibs twice a day to keep up with the drool.

For some time now, Emily and Sophia have been counting down the days to Janneke’s first birthday. Lest Ralph and I wallow too long in our sorrow over recounting her birth, we have been pushed to celebrate. Em and Soph have been “secretly” preparing for the big day, making sure Janneke doesn’t see all the cards and presents her big sisters have been making. They used their birthday money to buy Janneke a wind-up rabbit and a clown that plays a song when you pull its nose. And there is a big balloon tied to her chair. Shhh... don’t tell.

Tomorrow, we will eat cake -covered with sprinkles and loads of icing- and we will sing. We will celebrate, we will embrace the sugar high. Monday will be a big day for Rachel with her growth hormone testing, but tomorrow is Janneke’s big day. So we sing. Great is His faithfulness, for He has carried us through this year and promises to stay alongside us in the years to come.

Happy Birthday, Janny-Bunny. You are loved.


Sunday, March 7, 2010

here's to muck and mud

aaahh, spring. Good bye, snow. Hello, mud.

We took advantage of the sunshine, slightly warm temperatures, and good health this weekend. Thanks, nurse Ruth, for your help!

By the way, Rachel's bed is set up. Alan B. came over and helped us set it up - thanks! It's a really big bed. Really big. Emily and Sophia can both snuggle with Rachel at the same time. Sure beats crawling in the crib.