Wednesday, January 29, 2014

another visit

I had a chance to observe Rachel in her classroom this week.  Last week was Janneke's turn, and this week I was supposed to see Rachel.

Except that within minutes of her session, she looked at me, propped out the bottom lip and started to cry.  I took her out of her chair to hold her - and she promptly fell asleep.  I am going to try next week.  And this time, I will hide behind a one-side glass partition in hopes of catching her in action.  I've always wanted to call up my inner spy; if Rachel doesn't see me, I think I might get a truer sense of what she does in session.

At home, she is more engaged again (this comes and goes) with what we do on the iPad.  There's an app called Little Bear Sees that both girls enjoy.  If you are curious, you can check out the trial version.  It is very basic but challenges the girls at their level to activate movement - cause and effect.

I have to laugh at her consistent response to the camera.  She does not like her picture being taken!  She also acts a bit "off" when my phone is nearby.  The other day, I tried to email someone while sitting with her, and she pushed her body onto my phone, preventing me from doing anything.  I find that a typical reaction from a seven year old.

Last week, we met Kooper, Uncle Harvey's dog.  We have considered a dog - maybe a therapy dog? - but we haven't come to any firm decisions.... something about the mom of this house wanting a dog that doesn't require more work.  We have a couple of ideas, so the conversation is currently active. It was amusing to see Kooper's reaction after the girls started making their sounds.  Both Rachel and Janneke make unusual sounds -which we are used to - but Kooper was immediately nervous and backed away from the girls' room.  I did catch a few photos before he bolted.

And this little lady?  She is still practicing her steps.  She is quite bold and has apparently walked right out of her classroom in her walker.  Git yer' motor running...

Today I had a chance to share a part of our story with a group of women in Dunnville in connection with our church denomination's ministry called CoffeeBreak. Though the winds and snow were blowing, it was good to get together.  In sharing our story, I hope that others will be encouraged in their journeys.  We all have stories - some very private and some more public - but each story matters.  I've had the opportunity to speak to a couple of different groups, but each time brings new perspective for me afterwards.  The individual conversations that follow remind me of the importance of being honest and real.  Life can be difficult.  But we are not alone.


Tuesday, January 21, 2014

Tuesday morning

You really gotta wonder what she's thinking.

I had a chance to visit Janneke in her classroom yesterday.  It was a treat to observe the action happening at the Niagara Children's Centre School.  Yet, as spirited as Janneke can be at home, she was not very excited for a Monday morning.  Come to think of it, who really gets excited on a cold, bleak, Monday morning?

She had centre/free play time where the staff tried to respond to her intentions, but it seems lately, this kid just wants to explore walking.  The walking continues to be assisted with staff and a walker, but she is loving the feeling of moving her feet.  The movement she did in the last year was more of a step-and-glide; now, she is intentionally putting all her weight into her steps.  The best is when she jives to the music.  Better dance moves than her parents, that's for sure.

Janneke does have her "zoning" times, when she tries to mentally escape.  She often pulls her finger tightly and stares away from the scene.  Some days, she does this almost the entire day, and there are other days when she is quite engaged.  I am trying to figure out what catches her attention, but it is not so easy to decipher.


According to Janneke, water play is fun if you can get your head wet, but painting employs the skill of observation - she'd rather watch someone paint for her than get her fingers involved.

Back at the ranch, we try to give Janneke different things to catch her attention, but water remains a favourite.  She'd dive into the Tupperware if she could.

Rachel seems to be on the mend as the pain spells are less and less frequent.  I got some great smiles from Rachel when I popped in to see her after my observation time with Janneke.  She was watching the school kids eat - supervising.  The other children filled my ear with stories and questions about themselves and Rachel.  I love seeing my kids in communion with others.

Today is another cold day, colder than yesterday, so I covered the girls in blankets as they loaded into the bus.  Both left the driveway with smiles, and I am reminded of how thankful I am for our busdriver and rider.

We are also so thankful for our community.  On Saturday night, we received a gift outside the mudroom door that will be helpful in the years to come.  As difficult as some of these challenges are with our children, we are blessed with supportive and caring communities.  Belonging gives roots to empowerment and energy.


(ahem) This is another selfie that Soph and I took with her pencil.  And Rachel and me.  Is it a selfie when there are three people (sort of) and a pencil represented?  Soph was stalling on her homework and thought this would inspire her to work.


Tuesday, January 14, 2014

small steps

Someone's steps are getting more and more confident.

Janneke shows progress with her weight-bearing and steps although she hasn't awareness of falling or the space around her.  Our goal is to get her to walk with assistance for short distances.  The wheelchair is still her safest mode of transportation, but perhaps we will see her walking around the house with a walker someday.  I guess that means she could also learn to walk away from me.... Not sure I am ready for that.

Rachel is back on meds again - more antibiotics.  I ache for my girl with all her pain issues.  She seems to be dealing with either a new infection or a recurring infection.  Today we started some probiotics to help her gut cope with the antibiotics.  In the past, probiotics have prompted more pain, but with the antibiotics, she seems to need that extra support now.

I am tired of worrying over her.  I am reminded daily of how much my concern for my girls consumes my day and affects my ability to function.  This morning, I stood at the self-checkout at the grocery store, staring at a green vegetable in my cart.  I couldn't remember the name of the said veggie, so I held in the air and hollered for someone to name it.  Zucchini.  Of course.  And the brain started working again.

Tonight, Rachel has been quiet.  This is good.  She cheered Soph on with her homework and was rewarded with hugs.  A piece of peace before this day is put to bed.

Peace for your week,

Sunday, January 5, 2014

a new year - 12 more pics

Snow, snow, and more snow....  I wonder if Rachel is wishing for a skichair instead of her wheelchair.

Happy New Year.  It begins again. 

The season of snow is bittersweet.  For those of us who are able, these months are filled with skiing, sledding, snowplay, and skating.  But, for Rachel and Janneke, it is a season spent mostly indoors.  That reality brings the living grief to the surface again, and I am reminded of their inability to play and be in the wintry wonderland.  Wheelchairs and snowcovered sidewalks don't mesh, and we can't throw them on a toboggan full of kids to careen down a hill.  

The girls spend most of their time inside, and we try to be creative with positioning (wheelchair, walker, floor) as well as activity (TV, books, music, watching Mom make soup).

A couple of days ago, I caught this cosy moment when the nurse let them nap in front of the fireplace.

We had friends over for New Year's Day, and we witnessed a great "Rachel-is-making-a-choice" moment.  The older kids started a movie, and I noticed Rachel was uncomfortable in her wheelchair.  I put her in bed, but she started to shake her head and bang her arms on the mattress.  She and I made eye contact, and I asked her if she'd like to be with the kids on the floor.  She stopped her thrashing, and she peacefully watched Despicable Me 2 with her head next to Soph and her legs on Gavin.

As frustrating as it can be with the difficulty in taking Rachel and Janneke outside, we have resolved not to let the snow melt before we enjoy the outdoors.  Ralph has taken Em and Soph to the slopes several times, and they have made some great memories.  It has been a bonus to share that skiing and boarding fun with friends and family too.

I'm not so keen on the slopes... something about being on a hill and having to go down.  While Em, Soph, and Ralph race down the mountains in New York, I tend to enjoy the flat trails close to home.  This also makes it easier to manage care for Rachel and Janneke... and I love being back on x country skis after a 16-year hiatus.

 (I ski alone, so this is the best photo I can get of me skiing. My girls say it's a terrible selfie.)

It was awesome to see Soph and Emily smother Rachel with hugs when they came in from the slopes last night.  They were keen to spend time with her and make bracelets for her.

Today it is a bit mild -rain is in the forecast again, so I took the girls out on the covered porch for 30 minutes.  Janneke did a few laps around the swings, stared at the snow and then stood in front of the door as if to tell me she was ready to go back inside.

Whatever you resolve for the year to come, keep it real.