after the birthday

The cake has been eaten. There are still a few balloons around, and Janneke is enjoying her gifts from her big sisters. Thanks for your kind notes and cards!

It’s been a busy week. Last Monday, Rachel had her growth hormone testing; we are waiting to match the results of tests with her upcoming MRI. The tests went smoothly, and we were thankful for the portacath, making the bloodwork and IV access so easy.

Emily and Sophia had a great day while we were at the hospital with their friends Clay and Gavin who live “in the woods”. They love making a fort in the woods, roasting hotdogs for supper over a bonfire, and bringing home tons of mud. Ah, to live outside city limits!

Rachel did give us a scare a few days later that resulted in a trip to the ER. She woke up with what appeared to be a urinary tract infection -or so I thought. The doctors were concerned, and after more bloodwork and an ultrasound of her kidneys, they knew it wasn’t an infection, but they weren’t certain as to what was wrong. We think her body was reacting to an infection she had two weeks ago, but we aren’t sure. She is due back to Mac tomorrow for another ultrasound of her kidneys and a consult next week with a nephrologist.

In the meantime, we also had her transition-to-school meeting. Funny to be sitting in a room with seven other adults, all planning Rachel’s next school year. We will know more in May about where she will go in September. Rachel was also a part of the meeting, and that helped the others visualize her in a classroom. She grew bored of the adult conversation quickly and amused us with her chirps.

Janneke has a cold right now that complicates her sleep and breathing, but she seems okay. Her cough makes her sound like a smoking opa, so I pulled out the suctioning machine last night; it was encouraging to remember that it has been a long time since we had to use it.

Sometimes, without warning, our circumstance overwhelms us. It is difficult to maintain balance, so we took a day last week with Em and Soph and went to Toronto. We visited the art gallery (AGO) with the Elzingas, and we enjoyed walking around the downtown streets and subway. It is always odd to be out without R and J, but sometimes, that just gives us a chance to breathe a bit deeper. Funny how on the way home from TO, we both felt the tension and stress return to the back of the neck and head.

Tonight, I met with a parent group to discuss the upcoming provincial budget: Do we really think the province will budget for CTCs (children’s treatment centers)?! Here’s hoping. We’ll find out Thursday.

After the official part of the meeting, we discussed as parents the importance of connecting. When you are a parent to a child with special needs, there is the very real possibility of slowing losing touch with a larger community. Over time, the special needs look less cute on the kid, and the “strange” behaviours become more obvious. It reinforced the importance of sharing our stories. Not to bring pity or guilt but to stay connected with each other, especially with family and friends who do not have children with special needs. Maybe the shared stories will bring a greater desire for acceptance of our children as they age, and everyone can embrace a new normal.

Rachel loves to play the piano with her feet.

Janneke and Rachel playing soccer with their favourite textured ball.