Tuesday, September 21, 2010


I know my daughter, my Sarah. I know when she is happy. I know when she is proud. I know when she is content. I know when she is sad. I know when she is frustrated. I know when she is angry. I know when she is worried. I know when she is scared. She is my daughter, my Sarah.
Last year when Jacob was battling seizures in the hospital for 50 days, we were all struggling with life and how to make sense of it. Every day brought something new to us, and often, the news were not positive. We lived in uncertainty with no guarantees of what tomorrow would bring.
I could still comprehend what was going on. I could still talk to Joakim as my partner and dad of my children of what was going on and what was happening to our little guy. I am lucky to have friends and close family in my life on my journey with Jacob.
There was one little soul who was very lost during this period of time. It was our girl Sarah. She was more quiet in school, she was not safe to sleep in her own bed, she carefully choose what she ate.
She still had to go on with her routine - go to school, go to her activities, and spend many, many hours away from home with her friends and friends of our family. She was not welcome at Children's Hospital due to their visitation policy during the flu season. She saw her brother three times between Halloween and Christmas. One time, Jacob was in a coma with more machines and tubes than she could count to. She still wanted to see him, since she was afraid that there was no Jacob any longer. She didn't trust the picture of him on the computer screen laying in the hospital bed.
It hurt me so much to see Sarah suffer through this period. Realizing that I could spend as much time at the hospital as I wanted, and my girl was simply not welcome due to flu season. I realized that she has many similar feelings to parents of special needs' children, but no place to bring them out. There are endless support groups and online resources for parents. As I talked to child life specialists at Children's, I got some ideas on how to help her, but even they were uncertain on how to approach Sarah with the situation of her brother. I got very conflicted information depending on whom I talked to. It was frustrating. It was draining. You spend all your time in the hospital, and when you finally come home, you have another child who is hurting and who is afraid. Looking back, I am amazed that we got through it all in one piece.
The 50 days hospital stay is also what inspired me to come up with a Sibling Support Program. A forum where siblings realize they are not alone in their situation, and where it's ok to be angry, sad, and frustrated with the situation and with the sick sibling(s).
Last night, we had the first Sibling night at Children's Hospital with the Butterfly (hospice) program. The kids ate pizza, ate even more cookies, played games, and started down their journey on acknowleding their feelings for themselves as well as those feelings they have for their siblings. The group was a bit smaller yesterday than I had hoped for, but many of these families have a lot on their plates, and not everybody made it the first night.
As we trained the volunteers I told them that the one thing I was hoping to get out of this program is that Sarah and other siblings realize they are not alone on this journey. As I was sitting outside the room, one of the volunteers came up to me, and said: "You have already reached your goal, these kids in there know they are not alone on their journey". He also told me that I shouldn't limit my goals. That you never know what this will take us, and what goals will be reached. He said that I might even change the outlook of a volunteer :-
I thought that was a good thought, and will keep my mind open as Sarah travels down the path of acknowleding herself and herself as the sister of Jacob.
Love, Maria.

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