There are a few videos where I look at Ivan’s challenges with anxiety, grieving, and starting new activities. Ivan has is own journey and we’re trying to figure out how to love and support him as well.
There are so many small (otherwise) normal things that are challenging now.
Miracles are a difficult thing for me to talk about these days. I believe in miracles. I watched miracles happen when my kids were born and when I gave birth to someone else’s baby. I see people talking about praying for a miracle. I see people saying that their prayers are working so keep praying for whatever it is they are asking for. I don’t mean to diminish anyone’s need for a miracle. We all need miracles. There was a Christmas song that I kept hearing with the words, “there can be miracles if you believe.”
Well, we prayed for a miracle for our son. We had people praying all over the country that there would be a miraculous recovery for our 7 year old. He was not given a miracle. We were not given a miracle. Personally, I’m not mad at God, I don’t blame God and I don’t feel that this was God’s will because the God I serve is a God of love. But I have a constant, nagging question that I may never get the answer to. If there can be miracles, if you believe, why wasn’t our boy given a miracle? Did I not pray hard enough? Did I not believe enough? We wanted a miracle more than anything in this world but we didn’t get what we prayed for.
I will always wonder why our miracle was not granted. I try not to drive myself crazy about it but he deserved a miracle just like anyone else. This is a serious struggle for me. When you lose a child, you question everything about everything. You try to make sense out of something that makes no sense at all. You feel everything at such an intensity so feeling like my boy was not given a miracle, it’s a powerful intense feeling. Our grief therapist tells us to “screw the why’s” because you won’t get the answers to your questions this side of heaven. And I try to not obsess over it. It will be something I will find out when I am reunited with my precious boy. Until then, I will always wonder.
Recently, I have been very reflective about my grief journey. Thus far, it sometimes surprises me just how intensely I feel everything. If I get angry about something, I get very angry. When I find joy, it is intense joy. When there is am injustice, I want to right it, if at all possible. I’ve read that people almost actually miss the intensity of early grief. Most of the time, I don’t know how to feel and I can’t really anticipate much in the future because I try really hard to stay in today. When I go too far one way or the other, it’s too much for me.
With Christmas just passing, I realized so much of my anxiety came from the anticipation of it. How would I feel? How would I handle it? How could I be happy for my little guy while missing my big guy? At this point, it feels like the anticipation of an event seems a lot worse than the actual event. I’m not saying the actual event is always amazing or easy.
When I’ve been in an unfamiliar situation, I find myself anticipating someone asking me how many kids I have. Well I have 2 kids, but one of them died. When I’m around people who know our story, I don’t have to worry about this, but I get nervous to have to bring the conversation to that level. So far, I haven’t had anyone run away in horror. I’ve actually had people tear up instantly. It always shocks me to be the one delivering this horrific story. There are times that the weight of my grief feels so heavy that I don’t want to get into it. Other times, I am waiting for the question to be asked so I can tell them how amazing my sweet boy was. I really don’t know until the event occurs.
Ive already learned so much about myself, other people and grief. I have so much to learn but the most prevalent thing I’ve learned is that everyone has their battles. While I don’t feel the need to categorize whose loss or battle is the worst, because I know our loss is a huge one, losing our boy has made me empathize with others even more than I have before.
The holidays. I’ve always enjoyed the holidays. I’ve never gone over the top with any of it but it has always been enjoyable. Now that our son us died, I am not enjoying myself one bit. I am not going out of my way to go see Christmas lights, I’m really avoiding the stores and I do NOT want to hear Christmas music. For some reason, I keep hearing a song by Pentatonix and the words are loud in my ears. This particular song says, “there can be miracles if you believe.” That doesn’t sit well with me. In our situation, that is not the case.
The holidays are a time focused on happiness and family and being merry. How can I be merry when my 7 year old isn’t here with us? How can I be merry when I only have 1 child to buy Christmas presents for? How can I be merry when I look under the tree and there are half the amount of gifts? Watching both of my boys open their gifts was always such a joy because I could see that I got them what they wanted and they were so happy and excited. I know our little guy will be happy and it will be a joy to watch him open presents but it will be painfully obvious that his big brother is not here and not getting to enjoy the holiday that every kid looks forward to.
Im finding myself just wanting to get through things now. I’m doing it for our little guy. I will have to do hard things all the time to make things happy for him even though I am destroyed. This does not feel good. It feels horrible. This has shown me that the holidays aren’t happy for everyone. I am a bit envious when I see pictures of people enjoying all of the holiday festivities and I’m just trying to make it through until the next way lay of my heart.
Please don’t take offense to this because I realize that this is a very simple question that EVERYONE asks but I have come to HATE this question. I started hating it while our son was in the hospital. At that time, I didn’t know which end was up and I was getting by on sheer adrenaline. Now that my life has been shattered and I’m picking up the pieces every day, I hate it even more.
I will never get upset with someone for asking me this but there is one thing I will always promise, you will get an honest answer from me. Most people give the canned answer, “I’m good.” Well the truth is, I’m not good. I’m not great. I am surviving. I am getting by. I am alive. Those are the answers you will get from me. Every second of my day is filled with a mix of: sadness, confusion, shock, memories, emotional exhaustion, guilt, longing, denial, overwhelm and much much more. Then when you add taking care of and tending to a grieving 4 year old, running a household, trying to keep a marriage afloat when both of us are grieving differently, a constant barrage of messages (which I’m not complaining about and will always welcome), thoughts about how I want to honor my son, it’s a wonder to me how I get through a day. This is not easy, and I so wish this was not my story, but it is my story. I am constantly coming to terms with that. Our story needs to be shared and I will share it for as long as I live.
Some days, I might be ok. Some day I might even be able to say I’m good. I will always be broken. I will never be the same but one thing I will always be is honest. That is a guarantee.
I’ve heard it said so many times that childhood cancer is rare and I don’t think that is true. It’s definitely not rare to me now that my son died of cancer. I knew of one other child that died of cancer and another one who survived it before I was involved with St. Baldrick’s. Then the first year I went to the local event in our area, I saw that it definitely was not rare.
Now that I am the part of an organization called Friends of Kids with Cancer which is an agency that helps families whose children are currently battling cancer as well as families who have lost children to cancer, I KNOW it’s not rare.
I truly believe it is passed of as rare as to not draw a lot of attention to the fact that the research for childhoood cancer is vastly underfunded. And the more I learn about it, the more I find out that it is also vastly under researched. My mom brain wants to know why. Is it because there is no money in childhood cancer? Is it because no one wants to talk about it? Is it because thinking about a child under going horrific, barbaric treatments that were not designed for children is too much for people to think about? I think it’s a combination of all of these things. I never thought speaking about childhood cancer would be something I would do but I know it has to happen.
There is so much attention put on breast cancer and now there are millions, if not billions, of dollars raised every year to go towards research. Because of this, a lot more women survive it. So how about if we move our focus to a different area of research? I will never understand why people aren’t moving heaven and earth to find a cure for cancer so that children don’t have to go through this. Children’s lives should not be cut short because people don’t want to talk about this.