Lunch with the firefighters & an uncertain future

Thursday, February 17, 2011

Today Oliver and I went to the fire house on Ansborough and University Avenues for a delicious spaghetti lunch. There were about 5 guys working that shift and three were gone on a run when we arrived. Ben took us around on a tour of the small fire house while Mike finished up cooking the spaghetti and cheesy garlic bread, which was so good! Mike and Ben were both working the night they surprised Oliver with his Christmas surprise. Mike had said that they wanted Oliver to come for spaghetti since they knew that was his favorite meal! They reminisced about that night that he drove around town and laughed because Oliver was saying that he sounded the siren a little too long because he slipped and was hanging onto the cord that sounded it. It was fun chatting with them. We had such a fun time! It meant a lot to me that they would go the extra mile and do this for Oliver. They really didn't have to, but they did.

Ollie

Inside the fire truck

Mike showing Oliver the truck

Oliver spraying the extinguisher full of water. It was way better than a super soaker!

Oliver, "Mr. Cool"! We were laughing at how he crossed his arms for the pose. Also, notice his boots are firemen boots!

Ben, Ollie "The Axe Man", Mike

While Mike was showing Oliver around, I had the opportunity to ask Ben a difficult question that had been going through my mind about who to call if Ollie passes away at home. I didn't know if you called 9-1-1, the hospital, the funeral home or if hospice took care of it. He told me to call 9-1-1 and they would take care of it unless we had a funeral home in mind and they may come to the house. I've been thinking about a lot of things and wanting to be as prepared as I can, but knowing that there just is no way to prepare for something like this. We've talked about wanting him to be comfortable and how being at home would probably be the best place for him at the end. Getting to know others who have traveled a similar road and knowing that I'm not alone in the thoughts that enter my mind eases me a lot. I hate having to deal with this. I still can't wrap my mind around it. I shouldn't have to think about who to call when he dies or if they will take him out in a body bag. Do they have children's body bags? Planning for a funeral, seeing small coffins, where to have his visitation. It absolutely makes me sick. I don't want to be in this place. Why is this happening?? I know what I believe, but the WHYS still creep in. Why Oliver? Why DIPG? Why can't it be a cancer that has a better survival rate? It's hard to think about. It's hard not to be jealous of people who's children are survivors. It's hard to admit that I get jealous, because you want to celebrate with them, but it's hard knowing that there are only a few handfuls of survivors of DIPG. If even that many. A long term survivor is two years or more. WOW... REALLY?!

It's difficult hearing people say that their children 'beat cancer' or other things like that as if they had a choice in the matter or that they are 'the strong ones' and tried harder or something. The children that have passed fought just as hard and were just as deserving at living life than the ones that made it through their journey. I'm not saying that their journeys are any less difficult... not by any stretch of the imagination. I know that kids have other side effects from the cancer and treatments that affect them the rest of their lives. I know that there are many pediatric cancers that have taken children's lives. In the last 30 years nothing new has been done in the field of DIPG... that is highly discouraging. I don't know... it's just something I've been thinking about and struggling with lately.

I haven't lost hope for a miracle for Oliver... although some days I feel more hopeful than others. This is part of my grieving process and preparation for the uncertain future. I think when is it going to happen? Will it be around his birthday... or sooner? Will it be in the winter? How do they dig a hole in the frozen ground? How long will it be from the time progression happens until the time he takes his last breath? Will he be in pain? How will the other kids take it? Will it be too difficult to stay in the house that he passed in? It's been so difficult to plan anything because we just don't know what's going to be happening. Last year, planning for the holidays was difficult. Do we go anywhere? Is he going to be here? Do we buy him presents or wait? It's been such a roller coaster ride and sometimes I feel as if I'm one of the only ones riding it. You really find out who your true friends are through something like this. I've experienced so many emotions throughout the past year and have had difficulty forgetting about the insensitive and heartless things that people have said and done after Oliver was diagnosed. I know that I need to focus on the wonderful things that people have done for Oliver and our family. This lunch with the firemen is one of those things and I am grateful for their interest in helping to make Oliver happy. It makes me so emotional just thinking about it. I don't think they realize how much it means. If they read this... then hopefully they can feel and know how grateful we are. It is a journey. Day to day, step by step, breath by breath. Trying to get through the day without dwelling on certain thoughts or the 'what if's' has been difficult, but it's all part of the journey.

So... THANK YOU to the firemen for a delicious meal and a sweet memory!