keep on keeping on

And a lovely 3.14 birthday it was.  Thanks for all your feedback on FB and elsewhere regarding Ralph's letter to Janneke. Birthdays for kids like Rachel and Janneke can be bittersweet for their families. We are keenly aware with each passing year the gap between Janneke and her peers. Though she did not come to me with a sticky fingered list of all her best friends that she wanted to invite, she was loved by and excited to see family and friends that stopped in. We ate pie all day and into the night. 

The favourite thing for our now-six-year-old to do is walk around in her walker, staring at her knees, laughing and then spit shining the floor. Spit looks so shiny when you let it sit on the floor - says Janneke.

During our March Break holiday week, we took a few days with Emily and Sophia to ski and sleep. This was huge for our family; we haven't holidayed without Rachel and Janneke overnight. Admittedly, it was a big deal to prepare for, and it was emotional to leave. We had a lovely time away and took a few photos...but concentrated on just having fun with the girls.

This pic was taken to prove that there can be peace among siblings while they share the same bench. It is possible.

I popped this photo of the four of us on Instragram and referred our big helmets, matching wardrobes with Ralph and I... but I wanted to add that there were a number of people who made it possible for us to ski and board. Not only did we have a system of care with VON and the Teeuwsen respite team, we also had equipment given or on loan; we were thankful for all the people that helped make these few days away possible.

We had some time to think while away and noted that not only do we see the gap widening between Rachel and Janneke and their peers, but we too feel as if that the distance between our peers and us also widens. For as long as Rachel and Janneke are in our home, we will need to find care if we want to go out or away.  Those of us in the special needs community call it being "forever parents." It is difficult not to be envious of peers that can slip away with or without kids - without much hassle or hiring a team of caregivers. We noticed how quickly we could jump in the car with Em and Soph when we didn't have to pack all the supplies and Murphy's Law kits (if this goes wrong, then this..).  We forgot a neck warmer and substituted it with a t-shirt.  That was about as complicated as it got. Refreshing. 

It was good to come home and have those memories to savour. Unfortunately, we had to deal with Rachel's return to pain, but as of yesterday, we've started another med that will hopefully help. Her body seems to attract rare bacteria which then requires hard-to-find meds that fit in a g-tube.  She was smiling on her way to school today, so that was encouraging!

April is coming...spring is coming... and soon we can all be outside! We are anticipating busy weeks at school for Ralph, Em and Soph (the Annie play!), and I am excited to be a part of the planning team for the upcoming women's conference at The Meeting House. At the same time, I am also honoured to be involved as a parent rep for the Niagara Region Special Needs Strategy which is looking at how the province's care providers help children like ours in the home, school, and therapy centres. Speaking of school and therapy, we will soon share news of what the next school year looks like for both Rachel and Janneke as that is reviewed by the Niagara Children's Centre School in the month of March.

To sign off, here's a shot of the girls riding the golden lift #50. 
Almost as good as Willy Wonka's golden ticket.