Tuesday, June 1, 2010


Last year when things didn’t look great for Jacob, the possibility of him passing was in the room, I panicked. Just the thought of loosing him was a too big thought, even if I could logically process it in my head. What also made me panic was the thought of my own life. I have over the last four years adjusted my life as Jacob’s life has changed. Just the thought that my life as I live it now would change scared the shit out of me. Life with Jacob has become comfortable, and a place I was not willing to trade.

I knew I had no true impact on Jacob’s health more than being by his side, and making the right decisions for him, but ultimately Jacob was in charge.

I did feel a very strong urge in the middle of living with one leg in the hospital and the other leg at home that I sort of had to secure my future, which I did have an impact on. I felt very strongly that the special needs’ community and Children’s Hospital could not disappear from my life even if Jacob would. I am sure many of you think it’s weird. Who would like to have a hospital or special needs be part of their life to any price? I had the same thought when I realized this fact. But as it came to me as a strong desire, I realized I had some true impact on that desire. I didn’t ask to be part of this community, but as I am now a member, I am not willing to leave.

The day before Thanksgiving is typically a really busy day for most people, getting ready for the holiday. You might be spending your day grocery shopping, cooking, cleaning or getting your work done so you can enjoy your holiday. On this day, I did get our pre-roasted turkey picked up. The rest of the day I spent at the hospital with Jacob. I did have lunch with Eileen Forlenza, who works for Colorado Department of Public Health and Environment. She had gotten my name from one of the doctors in Jacob’s clinic. Eileen wanted to meet with me as she realized that I was “ready” to move up in the world of the Special Needs’ community, and making a difference not only for my family, but for the community itself. It was a very enlightening discussion as I realized that there are lots of opportunities to stay active within the special needs’ community no matter our future.

As I made the conscious decision that my engagement in special needs’ children is here to stay with me for the rest of my life, the opportunities started to unfold.

I am almost at the end of a 20-weeks training program focused on Family Leadership through Adams’ county. I have learned that I love public speaking, and that I am probably pretty good at it. I have learned that I can actively get involved in political issues, and personally make a change. I now know how. I also cherish all the people I got to meet through this class, since they have changed my perspective on many points.

Part of the training program, I had to pick a community project. This is how the Sibling Support Program was born at Children’s Hospital. The program is a go, and we will start it up in August of this year with the Butterfly (hospice) program. We will create 2-3 groups based on school-aged children, and have a specific topic for each monthly session. The program will run for a year. The time between now and August will be busy - we will set the curriculum, enroll siblings, identify group leaders and additional staff, set budget etc. I will oversee the program, and be the link between all involved stakeholders. I feel really proud that this is happening, and in talking to others, I could probably help other groups within the special needs’ community and other departments at Children’s to start similar programs. This is so exciting, but first we do need to get this program up and running!

I have also been part of an initiative through NICHQ (National Initiative for Children’s Healthcare Quality) since last summer with Jacob’s clinic. The initiative is focused on improving care for children with epilepsy. We have implemented many improvements for the clinic, and I have started up a parent support group for parents of children with epilepsy. We’re meeting on Facebook, and also in person every month. It’s just a fabulous group, and I am amazed that if a parent has attended a meeting one month, they come back next month, and the month after. We’re planning our first family event this weekend with a picnic in a park. It also looks like the clinic might start up a new project with NICHQ for the coming year. We’re waiting to hear about funding.

In getting to know the mom who has Jacob’s twin (a strong little girl with the same disorder as Jacob, only 6 months apart in age), we both realized that there is no support in Colorado for UMDF, United Mitochondrial Disorder Foundation. We felt we needed a change, and together with a third mom, we now have a group in Colorado for Mitochondrial Disorder. We’re planning our first event in August!

One thing is leading to another. From the different connections, I am asked to participate on different boards at Children’s Hospital to give my input as a parent on the hospital’s issues and directions. Last week, I was asked to participate in a meeting to discuss the architecture of the new tower Children's hospital is building.

A really scary time in my life, forced me to take a stronger initiative, which is very satisfying to myself today. I would like to say that I just started all of this to make the world a better place, but it’s not true. It started with a big fat fear for the future. I am still proud of what has come out of it over the last six months, and hopefully I can inspire someone else to do that one thing they know they want to do – let it be out of fear, joy or true desire!

Love, Maria.

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