Tuesday, June 25, 2013

A Different Kind of Summer

So far summer has been good. It is a different kind of summer for us. Becca is back at Milldale for 7 weeks. She will spend a week in Flordia with some of her cousins at Nana & Pop-Pop's. In addition, she is doing a few different lacrosse camps.

Ian is doing a few different camps. This week he is doing V-Linc Computer Arts Camp. He has had a wonderful 2 days so far. In a few weeks, he will start ESY (extended school year) & Camp Horizion for a few weeks before heading to Camp Simcha Special for 10 days.  Then the week before school starts the kids will do a week of Lego Camp.

This is the 1st summer since the kids were in kindergarten that they have not been at Camp Milldale together. A hard decision for us to make but we know it was the right one for our family.

We are looking forward to our different kind of summer.

Friday, June 14, 2013


As you all know this year was very challenging for us, not knowing from day to day what where our family was heading or what was going to happen. In one way or another you are all there for us, a part of our village. Thank you for being there when we could not be to help keep our family as grounded as we could. With out realizing it you all put your feelings and fears aside and helped us thru ours without realizing it, thank you.

Today, we sent Becca and Ian to school as 3rd and 4th graders and they come home to us as 4th and 5th graders. This year was a wonderful learning experience for us in many different ways. We are still in our infancy stages of our current normal...thank you for supporting us thru this...seeing the kids come home from school and their activities, sometimes in tears but most of the time with smiles on their faces is a testament to all you have done and given us.

From our families...immediate to extended, to the staff at Chatsworth, to the families of Chatsworth, to the kids at Chatsworth, to the families and girls at Girl Scouts, families and boys at Cub Scouts, families and girls at lacrosse, our co-workers...THANK YOU..... THANK YOU....THANK YOU....and this does not seem like enough.....

Marci and Brian....Becca and Ian as well.....XO

Sunday, June 2, 2013

My Girl...

All of my posts are about life for Ian or with Ian...what about his beautiful twin sister, Becca. She does not have the "normal" life one would consider a 10-year-old having. This thought has crossed my mind many times as I have watched all the changes my family has encounted over the years. Just this weekend, we received Ian's monthly supplies. His nurse and I were sorting thru the boxes and both kids wanted to help. Becca started pulling things out...the filters for the cough assist and vent, the water traps,the yankauers; she said as she handed them to us. It amazed me that she knew what everything was but why did it? In one way or another medical supplies have been a part of her "normal" life. She has learned how to set up his feed thru his feeding pump, she has learned how to give him medicine thru his g-tube, how to get the water out of his vent tube and empty the water trap. All of this because she had asked. Some things we do ask of her, what did he say, can you change the channel for him, clean up your room, put away your books (wait that is what other parents say as well).

She is my superhero just as much as he does she handle all of the things she does? How will she continue to handle all that lies in front of her. I don't know the answers to those questions or many others but I do know she is our little girl who continues to amaze us in all she does. The strength she has shown over the years has blown us away yet you can still see the fear in her eyes as our family continues to face all we do.  I do know we will continue to give her all we can and watch her continue to grow into the wonderful person she will become.