Friday, February 19, 2010


At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. - Albert Schweizer

Gratitude was one of the topics in my family leadership class this past week. I got a purple post card with this quote. The purpose is to send the card to the person recommending this class. My card will go to one of the doctors in Jacob’s clinic who realized that this class would be a good fit for me. I am really looking forward to Thursday evenings. The only problem is that I don’t sleep well on those nights. My brain doesn’t have time to process all the ideas from the 4-hour class before it’s time to go to bed. Some of the leadership topics are not new to me, but it’s very refreshing to learn and discuss with a group of 20 people who want to make changes in their community and don’t take parenting lightly. This is not a class for parents of special needs’ kids. I am the only one. It’s very refreshing to see all these people so wanting to make a change in public school and in their communities, and making this investment for themselves and their families. Everyone comes in with an interesting background and story. If you want to get involved and do something for yourself, please check out the program at:

I LOVE that I have to do a community project. It’s easier to initiate change when you can point to this class for sure. I notice it as I talk to high-level decision-makers. I want to start a sibling support group at Children’s Hospital, since today there are no programs for siblings there. I have met with the Director of Family Services and Director of the Butterfly (hospice) Program. Both are interested! We have decided to see, if we can start this with the Butterfly Program, since we already have a limited group of siblings in that program. I am putting together my business plan over the weekend to present to both directors, and we will go from there! It does help me a lot that our social worker at the Butterfly Program wants to partner with me, since she has access to all the families. Wish me luck! I really want to do this for Sarah, and all siblings out there who so easily get forgotten in light of children with special needs. I could write a single journal entry on this topic alone, and the importance of acknowledging the needs of these siblings.

We have had a good week. Jacob is doing pretty well. We’re tweaking his seizure meds, since we have seen more seizures the last week of so. We’re very happy with his new day nurses. They are really great! Jacob also got his new wheel chair after waiting for 6 months of approvals from insurance companies. Check him out in the pictures! It’s so great to see him having a great seat again. I remember when we got Jacob’s first wheel chair at age 18 months. It was called a “kid cart”. It’s sort of a chair in between a stroller and a wheel chair, but reality is it’s a wheel chair! Back then, I wanted to call it a stroller. Now, I really don’t care. Whatever Jacob needs, he gets. The cards are on the table, and there is not much we don’t openly talk about these days. Death maybe. It sort of makes some people uncomfortable, and also us at times. The unthinkable. The thing you dread the most, even if it’s part of all of our lives. It’s like you give up hope. I read books on the topics. It sort of makes me not forget what we’re dealing with. Don’t ask me, if I truly know what we’re in for. I probably have no clue.

I wanted to end the post with a movie from Prestige Miracle Foundation. They have funded warm water therapy for Jacob, and they are just great guys with their hearts in the right place. This was not just a grant. They are checking in with us regularly, have brought us meals as we lived in the hospital, and truly care about us as a family. We know we’re doing their race on Mother’s Day this year no matter what! If you want to check out a grinning Jacob with his OT Jill, take a look at:

I started the post talking about gratitude. When I read the quote on the purple post card last night, I was thinking of all of you who are here for me, for us. It’s an amazing support. I also thought about my husband, who has lighted the flame within me many times. There is one thing I love more about him than anything else, and that is that he has no regrets when it comes to Jacob and all the decisions we have made around his life. He is absolutely sure that we have done everything right up until this point. For me, that is a true statement of love, and I thank and love him for that.
Love, Maria.

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