Thursday, November 25, 2010

completed window art

Em and Soph finished.... with a little help from Aunt Rhoda and Uncle Johan. And those are sheep in the field - not soccer balls. In the lower part of the grass, there are images of different kids from around the world as well as someone in a wheelchair. Above the Nativity, there are three crosses, reflecting the whole Story. What we found kind of neat was that the skin colour of the people and the Nativity changes throughout the day, reflecting dark tones as well as light.

Have a good night. We're off to the clean the paintbrushes.


Tuesday, November 23, 2010

Tuesday night

sweet sister love

It's about 9:30 at night, quiet time around here. Feed pumps are whirring, and the girls are resting. Both Janneke and Ralph have been unwell for the past several days. Admittedly, the weekend was not relaxing - not a lot of sleep, the coffee maker stopped working (!), and our plans for fun came undone.

Janneke started with a cold that quickly progressed to her eye (pink eye). She seems to be mending, but her cold and eye infection prevented us from traveling to SickKids in TO for a long-awaited appointment with geneticists. I know we don't plan to be sick, but the timing wasn't great. Now we may have to wait another 7 months for that particular appointment. In the meantime, there are other appointments slotted at both SickKids and Mac for the next couple of weeks.

Before Janneke's sniffles manifested into something greater, she had her hearing tested (again), and they deduced she has a mild hearing loss. Because she is so young, a hearing aid was not recommended yet. The hope is that her hearing may change (improve) over time. This happened with Rachel, so we will see if that is the same for Janneke in about six months.

One of our plans this weekend was to paint the sliding door window for Christmas. I was very proud of Emily and Sophia, as they did most of the work. I was unable to help because Janneke required extra attention, but I did have have time to snap a few photos of the work in progress. Completed design photos yet to come...

If you are curious, it's tempera powder paint mixed with dish soap. You design your picture on paper, tape it to the outside of your window and then paint the inside. When you are tired of your design, simply wash your windows. When I was young, we would do this to our front window in December. Aunt Alida, do you remember the patterns you used to send us?

So, now in the quiet, I can finish the laundry, unpack the dishwasher, send off a few emails, make formula, and clean up from the day. We've got the Benadryl, Advil, and Pedialyte on hand, and I hope their bowels rest through the night.

Couple of random thoughts:

Check out this link - some brave souls and a few familiar faces spreading contagious holiday cheer in Welland. Wouldn't you like to be surprised by a flash mob?

Consider a unique gift for Christmas -your blood. The more I hear about my nephew Caleb's journey with zucchinia (his word for leukemia) and the transfusions he requires from time to time, I think that blood is a greater gift to give than chocolates or fruitcake.

And I was sorting through some old photos from Christmases past. This photo makes me smile and feel a bit sad. Rachel now wears the outfit that Emily is pictured in. The distance between normal and abnormal development becomes more obvious the older Rachel gets.

This photo just make me laugh and laugh. How hard I tried to get a decent holiday photo in 2006! Poor Rachel. She was being smothered with love.

Okay, this syringe is calling my name. Time to make formula for the next day.



Thursday, November 18, 2010

Thursday update

Christmas lights up yet?

I can't believe how quickly stores capitalize with the holiday shoppers, starting with The First Noel on the first of November. Yet, I must admit, this Saturday, I hope to paint our sliding door window with the girls. When I was younger, my mom would often have all of us participate in painting a Christmas scene on the windows. Sure, it was difficult to look out the window, but it was an inexpensive and fun way to remind ourselves of the Reason for the season. And I am not one for sparkly clean windows any other time!

We were blessed with an opportunity to take our girls to a hotel last night. We don't often travel with all four girls - the trip to Michigan a few weeks ago was the first in a long time - but this trip was just down the road in the Falls. Our older girls absolutely loved the hotel experience, and all six of us enjoyed splashing in the waterpark. It wasn't Great Wolf Lodge, but it was perfect for our first time out. I wish we could have taken some photos of the girls in the water, but we had our hands full managing both Rachel and Janneke in the water. Suffice to say, all four girls were all smiles. It was a joy-filled evening.

Yes, joy-filled but lacking sleep... such is a night away from home

The next few weeks will be busy with different appointments at Mac and SickKids, but we are so thankful that we could steal away for a night, and we are thankful that all four girls have been reasonably healthy. This is wonderful -so different from last year with all the H1N1 hype.

Hope your weekend is rest-filled.

Rachel absolutely loves hearing the piano. Last weekend, we were treated with two friends from my college days, Renee and Kim.
Wonderful conversations and great encouragement
-not to mention more adults wishing to give our girls lots of love, smiles, and better piano skills.

Janneke is figuring out her big sister's favourite toy.


Tuesday, November 9, 2010

It is what it is

Yesterday, I had the chance to attend the annual OACRS conference in Toronto. OACRS stands for the Ontario Association of Children's Rehabilitation Services, representing the 20 children's treatment centres in our province. Our local children's treatment centre, NPCC, offered the four parents who served on the parent advocacy committee from 2009 complimentary registration -with reference to our work on the committee. It was a long day, but it was an insightful day.

I enjoyed listening to the morning speaker, Spencer West as he shared his life's story. He lost his legs at age five, and has since overcome so many obstacles. He joked at the conference about his body -started with a story from his youth about volunteering at a magic show that went horribly wrong. It was soon evident that his story was a joke, in a successful attempt to put all of us at ease with his appearance. What I will not forget is his recounting of the time when his doctors gave him prosthetic legs, so that he would feel normal. After trying them numerous times, he finally set them aside and stated that he felt more normal simply being himself - with no artificial limbs. He encountered very stupid children in school who thought nothing of bullying him... yet, today, he carries no revenge or bitterness. Instead, he works with an organization to build schools in Kenya. Wow.

I loved the idea that he felt most himself without the artificial limbs.

So often as parents, we think that the various medical procedures, therapy, and equipment will help our special needs kids feel more normal, be happier.

Yet, there must be a balance with that perspective. Sometimes, the extras actually aggravate the circumstance, and you have a child who is unhappy or a caregiver who is overwhelmed with all the daily intervention required. The term "quality of life" is tossed around a lot in our circles. What measures quality of life accurately - especially with non-verbal, severely disabled children? Sometimes, as parents, we misunderstand what is best for our kids, and we don't just let them be who they are. Maybe we even try to disguise the disability, thinking we are protecting our kids.

This task of balancing the therapies and interventions with the truth and measure of the disability is not easy. Each child is so different, so the balancing act will also reflect that difference.

I also think the task also includes admitting all the emotions involved. Sometimes, our denial of the obvious drives us almost to exhaustion to find the "magic" surgery or toy or therapy. We want to think our kid will get better and be just like the other kids.

When we learn to accept the obvious, we can allow ourselves to be angry, sad - however complicated all those emotions may be. And then when we admit the cold, hard facts, we are free to move from that dark space.

In Power of the Powerless -which you all should read- I noticed this statement:

"Children like Oliver [severely disabled] exist as is. We decide if they are to be our tragedies, or if they are to be our triumphs."

No, I am not saying to someone who is just beginning a painful journey that they ought to grin and bear it. I am suggesting that at some point, when you have had time to unleash all the raw emotions, you then have that choice.

A tragedy or a triumph.

Spencer's decision came after many trials and personal desperation. It was only after the pain, that he began to find purpose and joy in his journey.

A friend sent me a note today about the development of a pearl. A pearl is indeed precious and beautiful, but its beauty is actually the result of pain and discomfort. The oyster's pain creates something precious.

Hmm... sometimes, it is these images and stories that enable us to sort through the human reflections of this journey called life.

Through it all, God is there. Really. There does exist His comfort in the midst of chaos and laughter on the lousy days.

And speaking of joy in the journey, here are a couple photos of Janneke learning to sit with her hands on her knees. These are part of her weekly physio session at NPCC where we are teaching her weight-bearing skills, including putting the weight of her hands on her knees. This also improves her balance.

Her way of pulling away from the exercise

Obliging the hands of Nancy, our PT

"So how long do I endure this, Mom?"

Hey, I can do this.

I'm proud of myself!

That's the extent of the deep thought for tonight. The house needs a bit of love -and decluttering. Time to work until the last feed finishes.



Saturday, November 6, 2010

run done

We are back from our race. What a beautiful, albeit cold, day to run along Lake Ontario! We are thankful for safety during our race and blessed with the familiar faces that ran and cheered with us. I love the sound of the cow bell as people finish -great fun to cheer for Dave, Dan, and Brenda with the 10K. It was so good to see some of my cousins there, and we loved cheering for Grandma as she crossed the finish line! I did miss my sister Jess. Caleb's counts were too low to risk hanging out with lots of people, so they cheered from home.

Both of the Boersma twins (family friends) kept checking out
Rachel and Janneke prior to the race -pressing their faces again the plastic.

Okay, it's like Where's Waldo -can you find me and the girls?
And maybe you'd recognize the two champion runners next to me?

There were two admirable and equally inspiring moments in the morning: One of my consistent encouragers with running is my friend Sally who, last year at this time, was the opposite of the sunny runner I saw today. Last year, she was dealing with a major health issue, and to be blunt, it is a miracle to share the race with her this morning. You are loved, Sally. Praise God.

The other moment occurred during the race. Two men passed me, and as they ran, the other commented on the direction of the turn and the path (gravel vs. pavement) of the course. I was curious as to why he was so specific with his running partner.... until I saw them both holding a small, single piece of rope. I realized they were matched for stride, and the one man was guiding the other, who was sight-impaired.

Talk about trust. And faith. Amazing. I can't forget that image of the two of them running just ahead of me. I know there are many parallels and analogies to draw from this experience. But, I will leave it at the description. You can mull it over.

I was proud of my girls, Emily and Sophia, who ran the 1K. They enjoyed the experience and "beat" Dad across the finish line. After being rewarded with cake in the runners tent after the race, they are more than ready to do another race. Free cake?! Why not?

Thank you for supporting our running this spring and summer. The three of us covered 147 km. I had hoped to cover more, but this is a good start. I hope to return to racing with the girls next spring, and maybe we can go even further. For now, I will continue with my own running and strength training. The girls are getting heavier and lifting them is always a challenge. We also appreciate all the financial support raised for NPCC. Your money does directly affect the therapy and resources available for both Rachel and Janneke. And... you are encouraged to find ways to support your local children's treatment centres all year round!

For these feet, I will keep running.



Wednesday, November 3, 2010

a wintry run

This Saturday marks our last race for 2010, weather and health pending. We will be in Hamilton at Confederation Park for the annual race - with both Road2Hope and Worldwide Christian Schools. This will also be our last 5K for the Niagara Peninsula Children's Centre. We had hoped to cover 200K while pushing, but we will most likely end at 150K.

Being a part of the event for Worldwide Christian Schools is important to us. Before Rachel was born, both Ralph and I were certain we would be using our teaching background in an international school, possibly helping in a developing country. But, with the arrival of Rachel and now Janneke, it seems we are not headed overseas anytime soon.

Running for the NPCC is also important to us because it is the link for us with other resources, amazing therapists who become part of our care team, and it is a place of hope for many other families in similar circumstances.

Both organizations work towards improving the future for children and future generations. WWCS works with indigenous leaders to develop and establish schools within the culture and community. NPCC works with families and kids as they are, encouraging personal growth and development - "Kids with special needs at their best."

So, maybe we will see you there on Saturday? You can also financially support either/both organizations with these links (NPCC and WWCS). It might be the last day to register for the race, but there is never a last day to give or show your support. : )

Have a good week. And a special thanks to the youth who worked hard on raking our leaves!