Last night I received an email that my good friend, Amy Donaldson, had passed away that morning. She died after a hard battle with cancer. I was first introduced to Amy when she sent me a private message on the Mothering forum. When Trey going through the diagnosis process, I posted on the Mothering forum, asking about Hunter Syndrome. Last August, when Amy’s son Owen began testing for MPS, she searched the same forum, looking for information.
We became instant friends, and when it was confirmed that Owen had Hunter Syndrome as well, we became even closer. Not only were our kids similar ages and we were going through the diagnosis and grieving period at around the same time, but we had similar values and beliefs and ideas about parenting and life.
We exchanged ideas on nutrition and foods and supplements, we talked about fundraising (we wanted to walk to meet each other to raise money for MPS…she lives in Vermont), we talked about home and unschooling, we talked about transplant because both of us were considering a Cord Blood Transplant at Duke. We had Duke assessments around the same time. We walked through the diagnosis and transplant assessment process together and became close. She’s a liberal minded mom like me and she had an amazing spirit and fight in her that I knew would get Owen so far in the world. She helped me cope because she was such a positive person and had such a positive spirit. And long before their family found out that Owen’s mutation is mild, she believed that Owen was going to beat the odds and do amazing things. When I was doubtful, she reminded me to believe.
There are so many things that are hard about losing Amy. She was an intelligent woman who did so much research on behalf of Owen and MPS. I will miss her knowledge and wisdom, her powerful presence and positive spirit. She was truly a wonderful and kind person. I will miss our connection. I never met her, but she felt like a sister. She was one of those people who I felt an instant connection with and who was a kindrid spirit.
Even more though, I feel sadness for Amy’s family. Sadness that Owen and Aiden (Aiden is Amy’s oldest son) will never experience what a strong mama they had. That they will never experience how hard she fought for Owen and MPS. Sadness that they will never experience her devotion and extreme love for them.
And sadness for Matt. What a wonderful man he is. I never spoke with him prior to Amy’s passing, but I spoke with him on Friday. I could tell after one conversation why Amy married him. I cannot imagine having to do what I do (take care of my kids and research MPS) and then having to support my family on top of it, without a partner.
Ryan is such an amazing support and I would not have made it this far without him. He is the one person in the world who loves Trey and Avery as much as I do. I would miss so much telling him about what Trey and Avery did today, celebrating their accomplishments, and loving them with every inch of our bodies. I am forever touched by Amy and am so very saddened by Matt and Owen and Aiden’s loss. I wish I lived closer so I could do more for them.