Meet the McNeil Family

Meet the McNeil Family

Friday, July 31, 2015


I have been thinking about identity recently. My identity. I have been entering into some new social situations that I would have felt completely comfortable in years ago. I now find myself averting eye contact and waiting for the escape. Small talk is not my friend. If the kids are with me, they become the visual expression of who I am. Because even though I know I can work to make things different, my identity has morphed into theirs. I am caretaker, therapist, nurse, insurance manager, chef, bathroom attendant, laundress, etc. I spend most of my time making sure they are well cared for and loved. I am realizing that I have been solely identifying myself as the mother of Waverly & Oliver who have Sanfilippo Syndrome. And while I love being their mother and caring for their every need, I have to cultivate me.

I am in the early stages of figuring out what this will look like. I have a very part time job as a patient representative on a board. It has been wildly fulfilling to finally have something that is totally and completely mine. However, I am mindful of the fact that I would not be able to have this position without the experience of parenting two children with a rare disease. I am going to delve into the world of a small group soon to get to know a few other women and do life together.

One of my fears is that when Waverly & Oliver pass away, I will not only have lost my children but also myself. I want to have things, no matter how small, to count on. People to stand beside me who know me. Opportunities to step back into the real world even if in short bursts. I have no idea what grieving the loss of both of my kids will look like. And I don't think there is any way to even partially prepare myself for it. Yet I want to do what I can to ensure that I am not gone along with them.

Thursday, July 30, 2015

A Bit of a Recap

It has been a long hot July, but we have managed to stay cool. The kids have spent 2 weeks at Jill's House for day camps thus far this summer. The rest of the time has been spent at home. We bought a few new pieces of equipment, especially for repositioning Waverly so she isn't in the same few chairs all day long. I found this swing online and thought it would be a nice item to add to our collection. It has a much larger footprint than I was expecting, however the kids seem to enjoy hanging out in it as seen below.

We also attended at party at Jill's House to celebrate 500,000 hours of respite provided since they opened their doors about 6 years ago. There was an ice cream truck (Oliver's favorite part of the night), BBQ, bouncy castles, therapy dogs and a pony. Oliver even reached out to show Teddy some love. As many of you know, Jill's House is very special to our family. We were thrilled to celebrate such a huge accomplishment with them.

I also took Waverly to the National Theater to see The BFG. We saw the production last year and it was so superb, I just had to take her to see it in a larger venue. We had a fantastic time. She thought the BFG was quite silly and watched the entire performance with a smile on her face.

Wednesday, July 8, 2015

Rest In Peace

Please take a moment to watch the video I shared below. It is brilliantly done and so accurately tells the story of life with Sanfilippo. Sadly, the little boy featured in the video passed away this week. Please keep Dylan's family in your thoughts and prayers. Our community is heartbroken.

Our MPS Story

Monday, July 6, 2015


It's been an emotionally difficult month. When Waverly & Oliver were diagnosed over 7 years ago, there were families we met that were also beginning their journey with Sanfilippo. You are drawn to one another because you can relate. We were all experiencing the trauma of diagnosis, the grief of the lives which should have been, and the stress of navigating this new world. And now our kids are older and their health is failing. Hospice is being called, DNRs are completed and hospital visits are becoming more commonplace. It's been overwhelming.

I remember talking with families who had older children with Sanfilippo many years ago. A few of them mentioned how they have lost contact with their fellow Sanfilippo families because it just gets too hard. I didn't understand it then. I certainly do now.

It is easier to stop calling and posting updates on Facebook. It's self-preservation. Protection.

I carry not only the sadness for my own children, but also for the beautiful children I have grown to love over the years. It hurts.