Sunday, October 31, 2010

Rolling into November

Okay, so the joke is a bit weak. The tire belongs to the tractor that pulled Emily and her friends in a wagon for a farm-style birthday. Thanks to Uncle Harvey and Aunt Carol for hosting "my best party ever" according to Emily.

All we needed was a filthy tractor, a good wagon, a pile of dirt, some bulls to scare, and the Pot Christmas tree from 2009 to burn. That makes for an eventful birthday, to say the least.

Who needs Chuck E. Cheese?

Sophia's birthday was equally exciting, but not quite so muddy. We had a lot of fun with the 7 year olds: dress-up parade, musical pumpkins, and balloon decorating. It is always entertaining to listen in their conversations. Rachel and Janneke loved watching all the action!

Two of the masterpieces.

With all the birthday excitement for the two older girls, we were still able to locate a similar horse to the one Janneke uses in her physio sessions at the centre. Thanks to Jess, Janneke now is quite excited to go on her horse each day. She has learned to lean forward and push slightly into each rock. That shows promise for strengthening her bones and the potential for weight-bearing.

Rachel does get her turn on the horse, but in the meantime, still loves to stand in front of the piano.

The sleep study from last week went well, and the follow-up is scheduled for mid-December. I think her sleep issues are due more to gas and acid reflux, which has increased as of late. It is discouraging to see her deal with so much gas and saliva that prevents her from resting. I feel like I am guessing at what works. Thanks to a friend, I now have a sample of a unique gastric pressure bag that works alongside the feed. Maybe that will help.

I spent some time researching the meds that Rachel and Janneke are prescribed, and I learned I should spend more quality time with our pharmacist- and online medical libraries as well as local library reference sections are great places to read.

Aside from dealing with the gas and acid reflux, I am challenged by what makes both Rachel and Janneke motivated and occupied. They are the opposite of busy, and they don't interact with typical toys. Here's an attempt to stimulate the brain: I hung a 3D-style image of fish in Rachel's bed.

And, a little gift from Fabiola entertained Janneke for a bit. It is a music box from Holland with the characters Jip (Yip) and Janneke (Yanneke). She touched it a bit and then was distracted by her hands (again).

We also had a chance to visit with a man and wife who run For the Needy, not the Greedy in Niagara Falls. I'll write more about that visit in another post, but, needless to say, it is an amazing place and the two are a very compassionate couple.

This past week was a busy one, another visit to Mac, and other issues to deal with. There are more appointments to come before Christmas comes - two trips to SickKids and a few more to Mac. But, I am very thankful for the nursing care we receive (makes it possible to have the birthday parties!), for Ralph's availability to share the responsibility, and for my children who make me smile.

Actually, they make me laugh. The other day, Sophia insisted on wearing her winter hat to operate the blender while making birthday cupcakes. Apparently, the hat softens the whining sound of the beaters.

On the eve of another month, I can't help but be reminded that God is good. Even when the tough days come, and I am frustrated with the circumstance, God is there -and He does provided the strength to deal with the yuck. How thankful I am that He is in control, not me. That allows me the freedom to give Him my anger, my frustration, and my sorrow -as well as my joys. He can use all that emotion and He wants all that emotion - no false fronts or pasted smiles.

Tomorrow there is school. And lots of little friends, ready to push Rachel to circle time. One little man has become quite close to Rachel, insisting on pushing her and sitting by her. We cherish those little friendships, and we hope the little man is feeling better soon as he had been sick last week. Here, another little friend takes her turn.



Wednesday, October 20, 2010

it's Wednesday today

Well, last week, it was the ground beef left on the stove. This week, it was the oatmeal. At least my stove gets cleaned frequently.

Another week, and I feel a bit like a hamster on a wheel - constantly spinning around from one thing to the next. But, yet the routine feels okay. It doesn't leave room for much beyond the kids' routines with school and therapy, but Ralph and I did snag dinner out for his birthday last week. I am proud of my older two with remembering their homework and their lunches each day, even if Sophia uses the scooter in the house. Emily recently picked up finger knitting and has decided to sell what she makes, so she can go to college. Love that.

I'm in a group with some moms of kids with special needs, and I was reminded of how we might be connected because of the unique needs of our kids - but our kids are still so different from each other. Sometimes, I am envious of a diagnosis. A diagnosis can bring a pattern and can connect you with other parents like you. Not long ago, a friend told me she wished her kid had Down Syndrome instead of "unknown syndrome" so at least there would be something familiar. I understand that feeling.

But, this life is what it is. Can't sit around waiting or wishing for changes or diagnoses. There are broken slinkys to fix (yes, I had to fix one yesterday) and races to prepare for (November 6). Time to also stock up on barrier cream because the cold weather is coming, and it is not gentle on hands that are frequently washed.

Today, it was amazing to see the leaves blown and tossed by the wind - almost in a pattern of dance as they moved through the air. Thank you, Nancy, for raking my leaves again today. With all the wind, I was reminded of Winnie the Pooh and the Blustery Day. I hid under my seat for that entire movie when I was in kindergarten. I have since worked through my wind phobia.

Sophia and cousin Aaron

Tonight, Rachel and Ralph are having a sleepover at SickKids in TO. Rachel is booked for a sleep study. Not sure what kind of results will come of a one night stay in an unfamiliar room for Rachel, but maybe we will get some insight on her sleep issues.

Rachel continues to LOVE her preschool program! Her face lights up when I say we are going to school. When we start to sing the familiar songs, she makes her chirping sounds and spits with excitement. It is fun to see her with the class, as I can sometimes spy on the class while Janneke is at the centre for physio. She has also connected with the other children in the class. There is one boy who loves to push her into the room and looks for her to arrive each morning. We are so thankful for this program and her development.

Earlier this week, we spent some time at Mac to discuss GI issues (gastrointestinal). Hopefully, we can find something to help both girls manage the gas pain and intestinal discomfort. It seems that Rachel struggles more with gas and reflux than Janneke.

Janneke is also developing in her own way. Yesterday, her physio therapist put her on a blue plastic Little Tikes rocking horse, and Janneke tried to make it rock. She was so proud of herself. It was awesome to sit and watch her make that connection between her feet and her brain. Very cool. Now I have to find that Little Tikes horse, so we can have more rockin' times at home.

She also had some neat moments with a beach ball last weekend. I watched her look at the ball and deliberately decide to hit it. It looks like my camera can take a series of photos quickly, but, as with Rachel, Janneke takes her time to make her moves. Thus, my ordinary camera can still capture each step.

Janneke continues to move in her walker. Last night, she moved from the livingroom to our bedroom and trapped herself in the farthest corner. Very funny. We are also anxious for Rachel's walker to arrive, so they can race or play bumper-walkers.

Tomorrow, Rachel and Ralph will return from SickKids, and in the next few days, Janneke will have another hearing test, both girls will return to Mac for another orthopaedic update, and Rachel will continue with school.

Emily and Sophia are in the middle of celebrating their birthdays - Sophia was last week and Emily is this week. We have some parties to plan! We also finished Calvin and Hobbes and decided to move to a more current story, Three Cups of Tea (youth edition). The true stories of life in Pakistan and Afghanistan spur serious discussions, but surprisingly, so did Calvin and Hobbes with the subtle stabs at school bullies, philosophy, and, of course, how Spaceman Spiff avoided math homework.

Have a good week. Take time to colour a picture with some new crayons and congratulate yourself for staying in the lines.


Monday, October 11, 2010

Happy Thanksgiving!

Happy Thanksgiving to our Canadian family and friends! Having celebrated both American and Canadian Thanksgiving growing up, I still think having the holiday in October is the best -and most colourful.

So, for our Thanksgiving this year, we headed, well... to Michigan. We visited Dave (my brother) and Jodi and their three kids. We met our new niece, Julia, and we had a wonderful weekend away. Their home is halfway between urban and rural -lots of trees, hills, coyotes, and chickens, but still close to Target and Meijer.

They have a wonderful deck that allowed our girls the space for the walker as well as their chairs. As the rest of the kids ran around, Rachel and Janneke could be a part of the fun. It made us think seriously about how we can make our own backyard more accessible in the future. Lots of dreams.

We also enjoyed the leaves!

We love introducing furry friends to our girls. Rachel loves dogs, and another dream is to have a dog in the family. I need a bit of time yet before we add another dependent creature to the household, though.

We took the gang to see different farm animals at a local petting zoo.

The moment after snapping this photo, the goat leaned to nip Janneke's feeding tube. I was quick to attempt a goat-headlock. Note to self: Hide the feeding tube when visiting the farm.

Speaking of farms, we saw this sign on our drive from the zoo to Dave's house. (I erased the phone number.) Oh, the fun we could have if we had time to be mischievous!

It was a great weekend to escape. Being away from the routine at home allows a person time to think and, in spirit of the holiday, reflect on the blessings. We were so thankful for the amazing weather, for the good coffee, and for the good conversations and play time.

Now we are home. The kids still have colds, but they are sleeping better than last weekend. Tonight, the washing machine is working hard, the kids are bathed and in bed, and, soon, another week begins. For some, tomorrow holds a heaviness, and for others, a new direction. Psalm 23 - He walks with us. Not somewhere way above us - WITH us.

Happy Trails. Have a good week.


Monday, October 4, 2010

seeking sleep and watching penguins

Sleep has evaded me as of late. Often, both Rachel and Janneke do not sleep straight from 10-6, but when they are dealing with teething or colds, their sleep patterns are even more complicated. Simply put, there is no pattern. There is no sleep. Instead, there are German penguin songs and Eric Herman (children's singer) videos on YouTube. Yes, the screen seems to distract both girls enough to prevent the crying and the fussing. But, how does a mom sleep while her little one is surfing the Net?

Nothing like the love of a big sister to comfort you
when you are not feeling well.

Today, Janneke seemed to settle more, and she has been sleeping most of the day. That does not necessarily mean she will sleep through the night, but it is a great sign that she is mending. Meanwhile, Rachel is also quite tired because she wakens each time Janneke cries out. In fact, she was trying to nap while we swam in the very warm NPCC pool as part of her preschool program.

So, in the middle of the night, while Janneke surfed YouTube, I would split the screen and look for special needs resources. Hey, I would have rather read a book, but that would put me to sleep while trying to console Janneke. There are some amazing websites online. There are also a lot of blogs. It is interesting reading the perspectives of other parents who are raising children with special needs. Some parents' views made my heart ache, particularly those who seem so angry or bitter.

I can't imagine their journey, for their childs' needs are different from mine. I do know and am reminded that we are blessed with an incredible family and community. A community of which many share the same faith in the same God. We are carried by prayers and encouraged when we feel so crappy. Sharing the struggles divides the weight of the burden. So, I guess I am saying, even when I have a lonely day, I don't know what it is like to walk alone. That's why I ache for these parents.

But I wonder too if the bitterness happens so gradually over time that you don't see it in yourself. Will I become bitter? Our journey has only just begun. Where will we be 10 years from now in our perspective?

In my daily routine, I go back to the prayer of serenity often. A copy of it sits above my sink, and the lines I find myself rereading are - Accepting hardships as the pathway to peace; taking as He did, this sinful world as it is, not as I would have it; trusting that He will make all things right if I surrender to his Will (and it continues).

The whole idea of surrendering to God's Will seems backwards or even absurd in this time of "seeking and using the power within" or "harnessing your spiritual energy." It is not easy to surrender. In fact, it's very difficult.

But, when I trust that our future is in God's hands, the pressure is off of me to make things work. Amen! I make too many daily mistakes to even imagine succeeding in managing my future.

I still remember my dad encouraging me with the words found in Power of the Powerless (Christopher deVinck) -

I asked my father, "How did you care for Oliver for thirty-two years?"
"It was not thirty-two years," he said. "I just asked myself, 'Can I feed Oliver today?' and the answer was always, 'Yes, I can.'"

So, we take the days one at a time. We can make the most of our excuse of sleeplessness - comes in handy when I forget family birthdays or the meat frying on the stove while I have Janneke at the doctor.

While the meat fried innocently on the stove,
I was on the other side of the city at Janneke's umpteenth hearing test.
She was able to have one ear tested.
We return in a few weeks to see about the other ear.

There is always something to laugh about - "Mom, when will I NOT have a milk moustache after drinking a glass of milk?" [me] "Well, maybe after lots of practice." Pause. "Actually, I am okay with a milk moustache. It looks cool."

Our kids keep us dancing. As desperate and crappy as I might feel during sleep strikes, I keep looking ahead for that better day. I anticipate the love from the girls, and both Em and Soph keep us hopping. Thanks to them, "Dynamite" (Taio Cruz) was blaring the other morning when I stepped out of the shower. And, I can't seem to forget the German penguin song either.

Cousin Aleah, six months older, asks, "May I have this dance?"

Puzzle time with Uncle Tim, Caleb, and Nella

Aleah was fascinated with our equipment -
How do I make this work, Janneke?

Peace to you for the moments of restlessness and patience to you when you are frustrated with life. As I publish this post now the day after I started it, Janneke did sleep for six hours straight. A gift, indeed.