Meet the McNeil Family

Meet the McNeil Family

Monday, June 11, 2012

Blue

One of the difficult issues that comes up in raising a child with a rare disease is how to relate with other families who have a child with the same rare disease. There is an online forum that I joined immediately upon diagnosis. And as I found my way around facebook, I connected with other families and joined support groups. One thing I have learned after 4 years in the Sanfilippo world, is that simply sharing a common diagnosis does not a friend make. We may be able to talk shop regarding the disease, but each family chooses their own path of dealing with it. Some families retreat, others immerse themselves, some choose to seek alternative treatments and therapies, while others decide to take a natural approach and treat symptoms as they arise. I have found those few families who I connect with on a level other than simply Sanfilippo. They are my go-to friends when I need advice or simply need to vent. Without their friendship, I would be lost. I recently realized just how horrible it will be when the children of these dear friends pass away. (Morbid thought, I know.) I am beginning to not only worry about my own children, but also these beautiful children who have become so important to our family. Obviously, I am feeling incredible sadness and as I have wallowed in Waverly & Oliver's future, I was reminded that I have dear friends who are also going to lose their children much too soon. I sometimes forget that our reality is incredibly abnormal and atypical.

4 comments:

Natalie said...

This is the first time I've ever commented, but this post was so right on. My son went through 3 1/2 years of chemo for leukemia (he's doing well now) and we met so many families through the journey. Sadly, so many have not survived their battle and we have grieved with them far too many times. It's hard on so many different levels. You hit the nail on the head -- most people would never think of something like this in the middle of their day. I do.

Joanne Huff said...

This really hits home, Shannon. Thank you being so candid by writing about something that can be so difficult to think about. I too have been feeling the layers of loss regarding the big picture in our Sanfilippo Worlds. It is just beyond devestating.

This was such a beautiful post, I just wanted to thank you again for writing about this. Joanne

Phyllis said...

Found you after seeing the your children's sweet pictures shown by their grandfather on Undercover Boss. We have different stories but similiar paths. It always makes me feel better to know that someone else is also trudging this unthinkable path-two kids with a fatal genetic disorder.

PK said...

I'm so sorry you and all the other MPS families have to deal with this, Shannon. I don't think your thoughts are morbid. They're realistic. Terrible as it is, it's going to happen. And when that happens you will continue to be there for your friends and they will be there for you. You have shared journeys thus far and can continue to journey together, no matter what happens. Your family (and friends) is in my prayers. Hugs to you all.