Still Here

I am definitely not abandoning the blog. It is going to be an incredible source of memories and photos for us. I have simply grown tired of the sadness. However, I realize the sadness will never leave. It is here to stay and while I will never get used to it, I will hopefully be able to better manage my emotions.

Lately I have been overwhelmed with "am I doing enough" or "am I doing the right thing". There is no cure for Sanfilippo. And there is no treatment. Duke is still pursuing the stem cell transplant, but we have made our decision regarding that option and never looked back. Some families are using certain supplements or off label drugs. It is very frustrating that no one seems to be doing anything to find a cure or viable treatment for our kids. What is a mom to do?!
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Messy and Wonderful said…
A mom can only do what you're doing. You're a great mom in the toughest situation.

I'm sorry about your saddness and grief. I'm praying that the Lord will draw close to you on this journey.
June 26, 2009 at 5:51 PM
Stephanie from Portland said…
You have every right to feel sad and frustrated and overwhelmed. No one could deal with what you are dealing with and not feel sad. Your children are beautiful and you are doing enough for them. As an outsider looking in, I can see how happy they are watching a balloon float by or watching their favorite video. You are giving them your love and support. What more could a child ask for?
Wishing strength and peace for you and your family.
June 26, 2009 at 7:45 PM
Anonymous said…
i heard of your family through a friend of a friend and i have been following your blog for the last year or so. i am so sorry about everything you have to go through. i can't blame you for feeling the way you do, i can't iagine the sadness you are dealing with. don't feel that you need to blog if you don't want to, do what you want when you want and don't worry about things. do what feels right for you and your family and hopefully it will work for you.
June 26, 2009 at 8:31 PM
Misty said…
You are doing all that you can do. I am trying to find us a treatment. I believe, with all of my heart, that we will find SOMETHING to help our children. I promise, Shannon I am working toward that goal for all of us. Allow your sadness to be, you cannot tuck it away, it is always looming but please remember that we are all in this together and I am here if you need me. Misty www.miracle4will.com
June 27, 2009 at 10:45 AM
Anonymous said…
I have been reading your blog for about a year after I got it as a Pray 4 from a friend. A few days ago I heard something I thought might be helpful on the Oprah show. She was talking to a couple who's son was diagnosed in utero with trisomy 18 and his prognosis for living was not good. They had decided before he was born that there would be plenty of time to be sad latter and that while he was with them they would be happy and enjoy each moment God would give them. Just another way of thinking about it.
Carol (cdsimp@yahoo.com)
June 27, 2009 at 11:17 PM
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