Monday, November 8, 2010


It was bitter sweet. It was a sigh of relief - we made it!
It felt like an accomplishment. It was a joyous moment. It was a celebration with cake and certificates. It was an evening of Stars who typically are not in the lime light. It was the ending of the first round of Sibling Stars at Children's Hospital tonight.
For the last 8 Monday nights, Sarah and I have being going down to Children's Hospital to meet other Butterfly (hospice) families. The Siblings have been broken up into groups to talk about their feelings around having a sibling with special needs. They have been the center of attention, they have been listened to, they have had fun, and for some there were also some tears that had to be shed.
I am going to miss the kids I met. All of them fun and full of joy, giving 100% every time. Some of them will stay with me as I will wonder what will happen to them next.
I going to miss the parents. We have so much in common, and also not. Many of the parents I would never meet in my regular life, but many of them grew on me over the last 2 months. Many of them having a much rougher life than we do. Many of them teaching me to appreciate the gifts we have in our day to day life despite dealing with heavy stuff in our house as well.
I am going to miss the volunteers. These wonderful people that showed up every Monday night to support the kids and the instructors. The volunteers who could have decided to stay home on their couch, but decided to come out to make a difference.
I am going to miss my Butterfly team who made this happen. All the neat ideas they put into place to make the kids and families come back over and over again.
It's bittersweet because next Monday night we're not going to be together on the 2nd floor of the hospital's conference center. At the same time, it's exciting to see how positive the evaluations of the program were. It's exciting to know that we're already planning the next Sibling Stars for the spring. It's exciting to know that I feel this program can go much further than the Butterfly Program.  One step at a time.
But the best thing of all is that this was for Sarah. Our lovely daughter who is not always in the lime light.  Who has a brother who so easily takes over the center spot of this house. Her brother who once again today struggled with seizures, and Sarah's first question when she came home from school was "are you going to call an ambulance?" My answer was that I didn't know. Sarah learning that it's ok to be happy, angry, frustrated and upset, sometimes all of it at the same time.
When Sarah was ready to leave tonight, one of the volunteers asked if she would come back in the spring, Sarah said: "As long as my mom comes along, I will be here".
So, I guess we will be back in the spring again. And so will Kim Christiansen from 9news. She didn't make it tonight, but we will be ready for her in the spring!
Love, Maria.
P.S. Jacob seizures stopped after 45 minutes this afternoon. His seizure rescue meds finally kicked in, so we didn't call an ambulance. Jacob is now sleeping in the sleep lab with dad over night. We're hoping the study will give us positive results regarding Jacob's breathing when he sleeps.

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