Friday, January 28, 2011

being able to love and be loved

Rachel on the right, Zekijah on the left, morning circle in the JK room at Beacon -always a fight to see who sits beside their special visiting friend...
Next week, it's Nadia's turn.


Thursday, January 27, 2011

being able

Don't you hate it when the kids change your settings and preferences?

Well, actually, Janneke has unintentionally done that from time to time. She loves to hit the keyboard to make the screen change with her site, so we have to supervise her. She loves the cause and effect experience; no doubt, if we don't watch her closely, she'll be checking out eBay for the latest toys.

Rachel had her kidney scan on Tuesday at Mac. I hadn't had enough sleep by Tuesday morning, so a good friend, Mel, came along to share the driving. Kind of nice to have her experience as a nurse to lean on as well.

Another good friend gave Rachel a portable DVD player, so Rachel was in good spirits for the trip. I do sense she knows when we are going to school and when we are going to the hospital. She has a hard time sleeping when we go to Mac and often spits herself soaked on the trip. With her favourite songs playing, she smiled most of the way.

The scan was done in the basement of the hospital, in the same spot as her MRI from last June. That now long-ago experience left us all a little shaken; Rachel was in the PCCU after the intubation provoked spasms, and infection, and a lot of fear.

This time around, what I found both heartbreaking and exciting was Rachel's reaction when we entered the room to prepare for the test. The staff needed to access her portacath to start the IV. When we moved to remove her shirt and help her lay still, she was red in the face, very tense in tone, and her eyes displayed obvious fear. She would not lay still. She remembered.

This from the kid who, last year at this time, did not flinch after numerous needle pokes and tests. There were never signs of awareness and reaction, let alone memory, from Rachel previously.

Now things have changed.

And in case you are wondering, the molecule tornado above and the spinning top below are not an indication of abnormal functions within: It's Baby Mozart playing on the TV.

This screen shows the radioactive stuff in her kidneys and bladder. It's about as clear to me as all the ultrasounds. Sure... whatever they say.

But, we did laugh at the fact that they needed to take Rachel's wet diaper after the test since it was considered hazardous/radioactive waste. We won't know any test results for awhile. We're just thankful to be finished with tests for now.

Couple of thoughts from the week: I met with some special needs moms yesterday - okay, moms of children with special needs. (That's an inside joke.) We talked about how we have changed since becoming moms to our kids. One of things I shared was the fact that though my child is the one considered disabled, I too, feel dis-abled.

No longer am I able to do the things I thought or wanted to do. There is a disabling of my plans, my activities, and my identity.

But, there's also an en-abling that comes from letting go. As moms, we all agreed that there was so much gained from the experience of parenting a unique child. Sure, it is difficult, and there are some very hard days. Yet, we can't ignore what we have since been enabled to do and feel.

Maybe it's treasuring the little milestones - and how long those milestones took to be reached. We've met many wonderful people, professionals and parents, who have taught us bits and pieces about ourselves and our kids. And it's learning not to sweat the small stuff.

I guess the enabling comes when we learn to roll (or swing -see below) with the changes that come. Not having control of our kids' development, our lives and our future seems frustrating, maddening, disabling....

or does it enable us to trust that much more, giving us the freedom to savour the days we've been given?

To Him who is ABLE to keep us from falling, who is ABLE to do more than we could imagine, according to His power that is at work within us.


Sunday, January 23, 2011


I often am amazed at how much happens in one week - and the range of emotions those days carry. Last week at this time, we were gearing up for a busy week of traveling and appointments. Tonight, Ralph and I are mending from what seems to be a mild stomach flu or a reaction to all the busyness. Either way, a diet of soda crackers and ginger ale gets old fast. Both Rachel and Janneke are also mending from a cold/possible influenza bug. The key word: mending. Thankfully, Em and Soph are as hyper and fun as ever.

The week started with therapy and school time for Rachel and Janneke. Monday afternoon found Ralph and I with the two girls at Mac, getting reacquainted with our ENT (ear/nose/throat) specialist. This visit was helpful to talk through the sleep apnea for both girls, the inability to suck and swallow, and the drooling. We were thankful to take both girls although Rachel developed a cold that same day.

What was quite interesting was Rachel's reaction to be examined. In the past, she would not flinch when the medical folks would poke and prod her - even with numerous needles. Lately, she has been more interactive with us and at school. And her awareness of her circumstance was evident on Monday as she actually cried when they tried to examine her sinuses and throat. She held her hands to her mouth and cried. This was heartbreaking and celebratory all at once. I think she was remembering her experience with the intubation and PCCU stay back in June. My little girl was doing her best to say "BACK OFF" - hurray!

Janneke in her physio session - kneeling is a big deal.

Janneke and Dad relaxing after a long day.

By Tuesday night, Janneke was crying and obviously very uncomfortable for most of the night. I wasn't crazy about leaving Janneke, but I had to take Rachel to Kitchener to visit an eye specialist Wednesday afternoon. Rachel suggested we have lunch with Aunt Michelle. So, we came early to the appointment and enjoyed lunch together in the lobby. Lots of coffee and prayer got us home.

Wednesday night was not much better for Janneke- or for Ralph and I with sleep. I was very thankful to have Carolyn come along to our SickKids visit on Thursday. She drove while I alternated between napping and talking her ear off. Very patient friend indeed.

Waiting our turn in the clinic in TO. Rachel kept her arm on Carolyn's while she read to Rachel. This is a new skill for Rachel, and we all love her touch.

Our appointment at SickKids was also to see an eye specialist. Again, Rachel showed her defensive side, particularly when the bloke (and he's from the UK, so I can say that) put a patch on her eye. Mum, take the bloody thing off!

The folks at the ocular genetics clinic (eye guys) didn't have much to add to what we already knew. There does not appear to be anything wrong with the function of the girls' eyes. Instead it's their perception and ability to coordinate their skill of seeing that is not quite understood. It seems that both girls have developed coping skills to see what they can, and until something appears radically wrong with their eyes, we will simply continue with assessment in Kitchener.

After the appointment, Rachel and Janneke took some time to watch the fountain in the Atrium while Carolyn and I had lunch.

I took a quick picture of Janneke because, with the angle, I could see her old NICU room window just above her head. Speaking of perception, I am so thankful our perceptive of things has changed since those long ago days filled with anxiety and tears.

Now we are home again. Both babes are mending from their colds. Janneke's cold seemed to lessen after switching her from formula to Pedialyte. She is looking and sleeping better.

Special thanks to our friend Jeannetta for working on the girls' leg warmers! These are much easier to wear when you sit and don't run in the snow. Janneke's pair was finished first.

And today, I was again thankful for Em and Soph's big sister love. While both Ralph and I tried to ward off the nausea, the girls created a Snoezelen room in Em's bedroom. Bernice is trying to put something together for Ella as well and had given me these fun lights. Em and Soph took those lights, some extra Christmas tree lights, two flashlights and a small disco ball - voila! Instant light therapy fun.

As an aside, we discovered another bit of Snoezelen therapy in the kitchen. Whenever we get a drink of water from our water cooler, the air bubbles in the jug make a noise loud enough to catch Janneke's attention. We stuck a flashlight on top of the jug Saturday night and had a good laugh watching Janneke's fixation on the bubbles. She knew it so well that whenever someone reached over to fill their glass, she looked at the jug. The Culligan Man should consider a new side business.

Moving into this week, we have school therapy for Rachel and OT/SLP therapy for Janneke. Rachel has another kidney scan on Tuesday. Not sure what to expect with that, so we are not worried. Certainly, after drinking all that water this weekend, I know my kidneys are working.

Hope the week goes well for you.

Thursday, January 13, 2011

yup, it's winter.

Well, we finally have snow to talk about. Nothing like the crazy snowfalls in London, Ontario or MN, but enough for sledding and fort-building. There was an afternoon this week when we were able to take Janneke and Rachel out to explore; they took turns coming outside to play with their sisters.

Janneke was immediately aware of the change from indoors to outdoors. She was quite curious and explored with her eyes and her hands. This was interesting to see because she is displaying a different reaction from Rachel -and from her earlier experiences with winter

It took Rachel a good ten minutes before she made any recognition or reaction to being outside. But when Emily ran while pulling her on the sled, she started to smile and giggle.

I love the big sister love that is in abundance here. The girls asked to take Rachel around the block while I took care of Janneke inside. Love that.

On Wednesday, the kids had a snow day - time off school! How handy to have great neighbours with an ice rink! Dennis and Kim's kids are about the same age, perfect for some hockey and skating tag.

Janneke is not into skating - but tubing instead. This swing setup is at the children's centre, part of the therapy program. The photo is from today's session with her occupational therapist and speech/language pathologist. Both professionals work with Janneke to help determine ideas for communication as well as for any developmental progress. As much as Janneke enjoyed the swinging motion, whenever she had a moment, she would use her pointer finger to find the shadow of her hand.

We continue to work with Rachel on moving her feet. In a few weeks, we hope to get a walker that will encourage weight-bearing movement for her. This is not necessarily to help her walk, but at least, she will have opportunity to strengthen her bones and muscles. This will help us when we transfer from her bed to the chair to the floor - or other equipment.

This past week was busy with two different trips to Mac. Rachel had her kidneys checked on Monday, and the doctor scheduled another type of test later this month to continue monitoring a condition with one of her kidneys referred to as hydronephrosis. Not a major concern at this point.

Janneke visited the neurologist today, and after our consultation, we were assured that all seemed well with her. We were initially scheduled for a series of tests on account of Janneke's seizures last spring, but she seems to be well enough to avoid those tests. Perhaps the seizures were a reaction to a virus she was healing from at the time - or the fact that her pituitary gland is smaller than normal (can trigger seizures with infants). We are not concerned - and that is one less specialist to see! (We also had a chance to visit our little friend Ella who we hope gets well soon!)

Looking ahead to next week, it seems a little nutty - but we have three trips! One to Mac in Hamilton (ENT), another to the eye specialist in Kitchener, and then a trip to Sick Kids in TO, as well as the morning school therapy for Rachel here in town. This is not a normal week, so we'll make the best of it! I am hoping for no van trouble, good driving weather, and a clear mind to keep track of the stuff.


Friday, January 7, 2011

piano play

Lately, the piano has become a favourite for both Rachel and Janneke. They used to enjoy simply listening while Emily or Sophia played, but now they want to play themselves. (Photo credit: Ashley)

Whether sitting or standing, they love to sit in front of the keys and make music.

Janneke has been very active in playing the keys. Rachel is more content to wait, listen, and then hit one or two notes. Janneke will stick both hands on -and only stop when she knows I am taking a picture!

Janneke has also figured out how to move forwards in her walker. And of course, she often heads straight for the piano.

When she is sitting in her chair at the keys, I love how she pushes her little feet against the wall of the piano to give her more "oomph" in reaching the notes. (This photo shows under the keys.) On Sunday, I wheeled her beside our talented friend Mendelt as he played the grand piano at church. She put her hands on the keys to join him, and the looks she gave his hands and then her own hands suggested piano envy.

Rachel is still contemplating her moves in the walker. She has moved a bit more in the last few days, but there are only a few steps, and they come after considerable waiting. She is teaching us patience.

And she is reminding us that she cannot be compared to Janneke. In these last few days, we are seeing more differences in their developmental skills. Perhaps that is to be expected since we also see differences between Em and Soph. A normal concept.

Today, Rachel spent some time in JK. She loved listening to her dad share her favourite story with the JK class - Is Your Mama a Llama? She also spent time with Zekijah. Z asks every day when Rachel is coming to visit. Another little friend, N, also was eager to share her puzzle. I love the little people of JK.

Rachel and I also took time to visit a special friend who is slowly regaining her strength and health after a challenging autumn. I wanted to include this photo because it shows the joy Rachel has when she is held and cuddled. It was a treat to share this hour with our friend.

Forward we go into the rest of January. We have a few appointments at Mac this month - checkups on kidneys for Rachel and ENT for both girls. I'll add updates later. Next week, we start back at the children's centre again. Rachel will be there four mornings, and Janneke will be there two mornings each week. We anticipate small but forward steps of progress. And I anticipate busier weeks.

Hey, Christmas tree! See you soon over a couple of glowing logs, with marshmallows and weiners hovering over your branches.


I do feel compelled to add a short note to this post for our Minnesota friends who are grieving the sudden loss of a dear friend and teacher - and former colleague of Ralph's. Bonnie Oberloh was preparing to return to her third grade classroom at the beginning of this week, but instead, was taken into the arms of Jesus. So soon, so sad - yet we know Christ will one day restore this world, and Bonnie firmly believed this too.

Saturday, January 1, 2011

into winter?

How is it that we went from this....

to this so soon? Wow.

Today, it was unseasonably mild, perfect for a walk and scoot in the rain. The smell of the soil and melted snow teased my kids into shedding their coats halfway through our jaunt. Crazy Niagara weather!

Janneke was positively grinning the entire time outside, but Rachel seemed puzzled. She wore a serious look for most of the walk though I know she did enjoy escaping the confines of the home.

Happy New Year, by the way. We rang in the year quietly here due to a mild flu bug. Thankfully, by this afternoon, we were all feeling well again.

It seems that January 1 brings out new resolutions in many of us, and we guess at what the year ahead will bring. I find I feel more resolved to change or do different things when September starts. For some reason, that seems more definitive to me as a new beginning. And, to be perfectly honest, with the blur of our routine here, sometimes the significance of the day is lost. I am thankful for Emily and Sophia who have been keeping track of when the new year began in different time zones. : )

This week has been normal for our family, for which I am thankful. Having Ralph's help as well as the nursing hours has created pockets of time for us to do normal things. I've been pouring through a book these last few days: The Boy in the Moon by Ian Brown. A fascinating and refreshingly honest account of Brown's attempt to understand his disabled son. Some of his stories and thoughts are so eerily similar to our circumstance - it's encouraging and yet makes me cry too.

Something he wrote made me think of what I've been tossing in my mind. I had a similar conversation with my dad not long ago, and here's the thought:

Some people say their disabled children are angels, sent from heaven for whatever reason. I don't think of Rachel and Janneke as angels. I see them as real kids. The kind of kids that highlight real humanness and, as their mom, my own inadequacies . Their disabilities are obvious - I prefer to hide mine.

And Christ's birth also reminds us of our imperfections. He dis-abled himself to become a baby lying in a stinky feed box (as written by Rev. M. Stephenson).

I guess, looking ahead into 2011, I hope I can use whatever moments and circumstances that come to illustrate His power and ability, not mine. I say this not in a delusional way, for I know that there are difficult moments when I am angry with God. Yet, I know that in those weak and dis-abling moments, He teaches us things we would not learn otherwise.

Happy New Year to all - here comes 2011.