This is going to be a free flow of thought kind of post.
I attended the funeral of a beautiful little girl on Saturday. Livia Grace was 10 years old when she passed away from Sanfilippo.
I spoke with Liv's mom days after they received the diagnosis. I met her at an MPS conference in Orlando a few months later. They were new to the world of Sanfilippo, cradling Liv's baby sister and watching this bouncy toddler with little manifestations of the disease. While the conferences can be informative and provide connections for parents, they can also be incredibly overwhelming. You are faced with the full trajectory of the disease; babies with no signs of Sanfilippo to teenagers in wheelchairs with feeding tubes being placed on the floor for a diaper change.
I have had the honor of speaking with Kelly, Liv's mom, throughout the years. We would exchange texts to check in or seek advice. She and our friend Stefanie flew in from Chicago to attend Waverly's funeral. This was a beautiful show of friendship and support. And for two moms who knew what the future held, another scary moment of entering into glimpses of the future. The last two summers we have been able to meet up in Chicago and enjoy a day together. I had a particular connection with Liv. She reminded me of Waverly. I would at some point of the visit situate myself next to her and hold her soft hand. It felt just like Waverly's. As Liv's body started to slow down I spoke with Kelly more often, sharing details from Wavey's story as she asked. I have learned from other moms that usually the best way to walk someone through this stage is slowly, only revealing moments as they are requested. It can be incredibly overwhelming and my choices are not going to necessarily be theirs.
I boarded a plane on Friday morning and flew to O'Hare. I drove to Rockford and had the privilege of spending an hour with Kelly talking in Liv's room. I listened to her story and entered the sacred space of her grief. It was a gift to have that time with her.
I then drove to our friend Stefanie's home. She has three children, two of whom have Sanfilippo. She is a fellow warrior mom. She walked alongside of Kelly in the bravest of ways. Stefanie is a woman of faith, who lives that faith daily. It was such a joy to enter into her home for a few days. To talk from the heart, share honestly and love her family. What an honor to know these ladies.
I cried for Kelly. I cried that my dear friend has entered into this side of grief, no longer anticipating. It is her reality. I cried that this world only had Liv for ten short years, yet in that short time she impacted many. I cried for Liv's sister at the loss of her best friend. And her father who would have given his own life to save hers. I then cried for Stefanie. I ache that she will have to do this twice. I cried as I held her children, J & B, who suffer with joy. I cried for her daughter E, who is going to lose both of her siblings. I cried for her husband who happens to be one of the best dads I have ever encountered.
As I boarded my plane home on Sunday I cried for Waverly. I miss her deeply. And I cried for Oliver. My sweet little boy who has gone through numerous changes in recent months.
I don't think I have ever wanted to squeeze Oliver more tightly then I did Sunday night. I relished in changing his diaper and holding his hand as he navigated the house. I spent time snuggling him in his bed and watched gratefully as his little eyes closed in sleep.
I have been living in a fog since returning home. I was taken back to my last moments with Waverly. I try not to allow my mind to venture back there, because it is utterly painful. I have also been faced with all of the changes going on in Oliver's life. He seems to have taken a large dip recently. His walking is much more disorganized and requires more support. He is flopping forward in chairs, needing support to sit up straight. He continues to lean to his side. We had the abrupt change in feeding, moving from oral feeds to full g-tube feeds. It all feels like too much too soon.
It took the events of this weekend for me to look at Oliver through a different lens.
As the younger child, he was always the healthy one. He was capable and strong. Comparing the two, Oliver always was in a better place for the simple fact of being three years younger. Then very simply he was alive, easily holding onto the crown of healthier. No need to worry.
Now I see him as an almost 11 year old boy with Sanfilippo. His body is slowing down, his joints are stiffening and his muscles are contracting. I cannot save him, but I can surround him with love and joy.
That is my job.