Over the past two years, and even more so this past year, Richard and I have often been told how “amazing” we are, how “inspiring” we are. People have said to us “I don’t know how you do it” and “I don’t think I could do it”.
We are just parents whose baby got cancer and then sadly died 13 months later. Today, there will be 47 other sets of parents that find out that their child has cancer. 7 sets of parents will enter into the world of being a bereaved mom and dad because of cancer.
We are not unique in our plight. People look at me and say that I am “strong” and “amazing” because I get up each day. However, that is not always an easy task for me. Sure, I do get out of bed – often though it is not until about 10am. Even then, it is a chore, and usually just because I am hungry, and right now, if I wait to long in my hunger, the nausea kicks in! I don’t shower right away – I eat my breakfast, read the paper, and then often retreat to the sofa or the computer for a while. I was working, but that was really hard for me. I am not sure if it was the job, the nausea, the difficulty of having to fully function each day, or a combination of all of the above. Most days I would rather just stay in bed and not face the world at all.
To me the truly inspiring families are those with other children. They have to “choose” between the sick child and the well child. How do you make such a choice? Either way, someone will suffer. The well children, will be missing their parents (and the sibling that is sick). The sick child needs the parents in so many ways. If a death should occur, then the children that are left behind, have their own sadness to deal with. But, they have to contend with parents, that are grieving the loss of a child. The parents have to some how find a way, to live for the children that are here, but yet, still live with the heartache they will feel every day for the rest of their lives.
I have always been a giving person, and I do find great joy in shopping for things to give back to the hospital. Toys, sheets, press and seal, Bubbles. Each Holiday I have been trying to get a little something for the kids that may have to be stuck in the hospital, as Alexander was. Being in the hospital is never a good time, and the holidays seem that much worse. I try to bring a little bit of sunshine to the kids and their families, as was often done for us. One family, brought Breakfast in for the families on Christmas Morning. How wonderful it was to have “real” food, and not hospital food on that day.
This weekend I volunteered at an event, Cure Me I’m Irish. It was a fundraiser to raise money for neuroblastoma research. I was able to tell my story to a few people, and again, they were “amazed” by me. But, I feel that it is important to give back, and to help in whatever way I can to make sure that some day, no families have to face what we are now facing. One thing they are working on funding right now, is a drug called DFMO that is helping kids with relapsed neuroblastoma (for which this is NO cure) http://www.beatnb.org/dfmo/
So, I guess if I can “inspire” people to do great things, that will be good. If I can help even one family make it through the day, then I am happy. But, please don’t ever thing you “couldn’t” do this. Yes, you could. Like us, you wouldn’t have a choice. You would figure it out – you would do what you had to do.
Many people in my situation are told “It will get easier”. Often, that advice is given from people that have never lost a CHILD. Maybe that have experienced a loss, parent, grandparent, dog – but never a child. It is a totally different story when it was a CHILD. Within my support groups though, it is often said “It doesn’t get easier, it just gets DIFFERENT”. Yes, some days are easier for us and we smile and laugh. But, there is always a sadness under the smiles and laughter. It is just different, and will always be that way.