***Just a note: I am writing this after a very long day in a car with little sleep. My english and writing skills are not the best at regular times***
We have spent the day in Wilcox Saskatchewan, watching our older daughter Mackenzie play hockey in the Mandi Schwartz tournament. This tournament is hosted by the Nortre Dame Hounds. Tomorrow (Today) Mackenzie’s hockey teams plays for the championship.
Many times, living with a child who has Rett syndrome, we forget about our other children in our home. We forget how siblings are forced to grow up fast and become second caregivers. When you can’t trust anyone else to take care of your child, you rely on an older or younger sibling.
We rely on Mackenzie.
Mackenzie is our second set of hands. She is there in the hospital when Ema is having seizures, or at night when she can’t sleep or when Ema needs food or to be dressed or to be cleaned up.
It is so difficult for siblings to “escape” reality and live a normal kid life.
We have really struggled trying to give that type of normalcy to our other four children. For our older daughter Mackenzie, we have found that one place with Balmoral Hall School and the BH Blazer Female Hockey Prep team.
I grew up with a grandfather (Jimmy McFadden) who played in the NHL. He won the Calder trophy (Rookie of the year) and Stanley cup. He played with some of the best players who ever played the game…Jack Stewart, Sid Abel and Gordie Howe, just to name a few. Grandpa’s nephew Bill also played in the NHL, along with two of his children who play high levels of hockey still. So many people think having Mackenzie play with the BH Blazers is all about the hockey…but it isn’t. Hockey just turns out to be the bonus part.
BH has allowed Mackenzie to be a teen and to be her own person but it has allowed us to feel better about who we are as parents. (By lending us a helping hand)
Having a special needs child takes a lot of energy and time. In our hearts, we know we are doing our best, but sometimes we feel like it just isn’t good enough. Guilt plays heavy on us.
It took us awhile to figure out that not only were Lionel and I tired, but so were the rest of Ema’s siblingings. They all play such a huge role in helping and caring for Ema.
Mackenzie switched from a small hockey school program in rural Manitoba to attended a large school in Winnipeg for her grade 9 year. This was the same year that Ema’s seizures started getting worse. Mackenzie’s grades dropped and we had no idea what was going on or how she was doing or even what classes she was taking. We knew something had to be done, so for her grade ten school year we applied to have her go to Balmoral Hall School, a private all girls school in Winnipeg. The number of students in each class were lower and there was a different expectation. Right from the first interview we knew this was something different. We did have to make some tough decisions for it to all happen. Private school isn’t cheap and with all the added costs of Ema’s therapy and needs we really had to dig deep to make it work financially. Even with the extra financial strain, it has been a life saver for us all.
Mackenzie is thriving. School isn’t always easy but she managed to be an honor roll student in grade ten. (and hoping for grade 11) The staff have all reached out and have really helped her push herself. We knew she was capable of having great school grades but we spent so much time caring for Ema we ignored the fact that Mackenzie needed help too. At BH Mackenzie is not just a number. They have continues to support Mackenzie and our family. They continued to listened to us and have reached out in so many different ways.
Even though the school has helped Mackenzie exceed with grades and confidence it still wasn’t all Mackenzie needed to be “just a teen”. That is where her hockey team this season has stepped in. Because the BH Blazers play in the JWHL they travel mostly into Eastern USA and Canada. This part allows Mackenzie to “escape” our reality at least every third week-end, hang with her peers and be part of her own special group. These girls come from all different backgrounds and situations. This group of young ladies has been a life line for Mackenzie. To see her smile and really enjoy everyone has been a huge relief for us no matter what the financial cost.
The icing on the cake for us is that this group is great with Ema. There is nothing better than hearing all these young ladies say “hi” to Ema or ask her for high fives when they see her in the arena lobby. It not only means a lot to Lionel and I but it means the world to Mackenzie.
GOOD LUCK to Mackenzie and the BH Blazers tomorrow.