We Chose to Embrace Life, But Are Coming to Terms With Death

I have a confession to make. Yesterday I was driving home and I heard a particular song on the radio that reminded me of my son. My thought while listening was that the song fit his personality and would be a great song to play at a celebration of life for him. This then led me to reminisce about different memories and stories I have of him that truly show his personality. I spent a 30 minute car ride thinking of the details for his celebration of life (because when a child dies you can’t do anything other than celebrate the life they had), while he was home playing with his brothers, as healthy as he possibly could be given his Hurler’s diagnosis and complications.

This is not that uncommon for me, once every couple of months or so my thoughts go down this path. Usually I have read about a couple of recent deaths in our MPS community, or my son has gotten some news from a doctor’s appointment that feels like a setback. Regardless of what sparks it, the reality of the situation is my son has a disease that will shorten his life and may possibly take him from me with minimal, if any notice. I know that there is a real possibility that his brothers, his father and I are going to outlive him. At some point we will have to figure out how to be a functioning family with a key person missing. Ask any parent in our community or who has a child with a rare disease that will shorten their life, and they will likely tell you that they have thought about their child’s death and about what life will be like without them (unless they can’t acknowledge that out loud or admit to someone other than themselves that they have had those thoughts). It is one thing to admit to yourself you think about and worry about your child’s inevitable death, it is another to acknowledge it to others.

It is a hard balance to make between mentally prepping and preparing for the death of your child — especially when there is no reason to believe it will occur soon – and living a life where you pretend that fact doesn’t exist and even possibly being in denial. If I spend too much time thinking about kids with MPS that are younger than my son that have died or thinking of how a certain upcoming procedure or sedation might take a bad turn and lead to his death, I would have a hard time getting out of bed. I also have two other boys to worry about so I can’t treat my boy as though he is actively dying. But it doesn’t mean that those thoughts don’t creep in and that there are not times where I go down that path in my mind. Not surprisingly it is something that I don’t share often, even with my husband. Talking about the risks of a procedure or setbacks we have faced are hard enough conversations to have with a spouse or family member. Trying to have a rational conversation about the inevitable death of your child is an impossible conversation to have. People mean well but sometimes telling me to “be hopeful, or that science is changing, or he is doing so well, or or even a cure is around the corner,” does not validate my feelings or concerns nor does give me a safe outlet to have these conversations. It might make the person saying it feel better or help them think they are making me more hopeful, but sometimes it just makes me feel more alone with my sadness and fear. I also don’t want to burden others with my thoughts and fears and the reality that death is. When you do try to voice your thoughts to others, people may say “they can’t go there, or they can’t imagine, or you can’t think like that.” But when you are given a diagnosis where the fact is your child will have a decreased life span, no matter how long or short that life is, you are always aware that you child’s life has an end and it will come before you know it or are prepared for it.

I am not always sad or thinking of his death, but I am always aware of it. Some days that awareness is faint and in the background of my every day, and other days it is front and present and demanding attention. However acknowledging that there is going to be a time that my family consists of four people in person and one in spirit does help keep me focused on the here and now. It helps me when I am struggling or overwhelmed with life and the chaos that is three young boys, to remember to savor and enjoy the moments. I truly do not know for how long I will be able to watch my three boys run and play and wrestle together. I want to fill his life, his brothers’ lives and mine with as many memories and adventures as I can so we have wonderful thoughts and images to hold on to for the rest of our lives. This also means that we sometimes make decisions about things he can or can’t do based on medical advice, but also based on what will increase his quality of life.

Recently we took our sons to the beach to play in the sand and put their feet in the ocean. Seems like a simple family outing but given our rare warrior’s immune suppression, medical advice has been to not allow him to play in the sand or ocean due to possible bacteria and such. That has been the guidance we have followed for the last three and a half years and we have followed it strictly until recently. He wanted to be like his brothers and we wanted him to have that experience, so we decided to let him play and be a kid and then to go home and take a bath and clean him really well. He had a blast and the pictures and memories of him playing on the beach with his brothers are embedded in my brain. Yes there was a risk, but we tried to minimize the risk and still let him have fun. We can honestly say we do not know when we make certain memories if we will have an opportunity to make similar ones again. Quality of life is especially important when you don’t know how long your child will be able to do these things and enjoy them. I want to make sure I give my child as normal and yet as full of a life as I can, whether that life lasts five years, 10 years or hopefully even 30 years.

I never expected to be a mother who would have to live every day like my child was dying but in fact, he is … and I do.