This is a continuation of a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock.
So as soon as we got our prenatal diagnosis that our baby was going to have a terminal illness, my instinct was to seclude our little family in a pod so no one and nothing could get to us. I planned to go it alone, I even wanted to. I didn’t feel like anyone sincerely cared, and was pretty sure that people would find me whiny for wanting to talk about my sick son. I really don’t think this was a symptom of depression…that did happen, but I am very comfortable being by myself and in times of crisis, I really like to meditate and work out a solution.
Today’s note is a tribute and a thank you to those of you who wouldn’t allow this to happen. Many of you know who you are, but you may not know the impact you had on me by doing both huge things and things that may have seemed small at the time to you. Others of you knew you were doing something huge and certainly didn’t want me to find out how truly selfless your act really was. People say that in times of crisis you find out who your friends are, and to an extent I feel it’s true. There are so many people who did so much to prepare me for Arthur’s birth, coach me through his life, and support me after his death, if I didn’t mention you name, it’s not because I don’t appreciate you, I just chose the three people who I think of every time I reflect on Arthur’s life.
The first person who came to my rescue was my dear friend Courtney. We had been close as coworkers as well as spending time outside of work together. Courtney took the time to do the research about holoprosencephaly when I wasn’t ready to do it myself but wanted answers. She had always been a true friend throughout my pregnancy and I felt that I could trust her fully with this task. She was also courteous enough to not clue me in on some of the truly horrifying ways that HPE has been known to express itself with some of the kiddos who have it. She gave me just enough information to comfort me without unnecessary worry and she also seemed to know when it was time to change the subject and distract me when things just got to be too heavy. She was one of the first people to visit the hospital once Arthur was born and also came by my home during his stay with us. This meant so much to me considering she drove over an hour out of her way both times just to let me know she cared. Considering this is one of the busiest women I know, I really appreciate the time she took for us.
Another person who really pulled through for Arthur and me is a girl who I only knew peripherally until Arthur’s birth. Arna is the daughter of a coworker who had recently given birth to a son herself. As her baby boy would outgrow his clothes, she would send them with her mother to work to give to me, something I really appreciated. Once I knew of Arthur’s diagnosis, Arna would send me messages of encouragement which really meant a lot. I am comforted in watching her son Beckham grow, he is only 5 months ahead of where Arthur would be, and I really appreciate that she gives me the opportunity to see him, view his pictures, and hear his stories.
I feel like many of my old friendships became strained after Arthur’s passing. I was no longer the same person I was before he came into my life and many people who I enjoyed being around didn’t seem to treat me the same. In my journey to find comfort and also to learn more about HPE, I stumbled upon the Families for HoPE website which is a support group for families dealing with HPE a few weeks after Arthur’s passing. I contacted an amazing woman, Leslie, whose son Sammy had HPE. Leslie immediately returned my e-mail offering me a ton of support and also sent me a packet of goodies from Families for HoPE. The thing I didn’t know is that while Leslie was comforting me, her own son Sammy was very sick and would be joining Arthur in heaven soon. The selflessness it takes to reach out to a grieving mother when one’s own family is suffering is such a remarkable quality and I will always admire Leslie for this.
I have also formed valuable friendships on my road to recovery. People who have encouraged me to start and continue endurance walking (which is the activity that I’m pretty sure saved my life by keeping me fit and distracted), other HPE moms, other moms suffering infant loss, and the people who have surrounded me all along who watch my evolution without judging. To everyone who has been there, thank you.
Arthur absolutely taught me to not go it alone, friendships and people willing to offer words of encouragement are vital.