SILENT CRIES BEHIND A SMILE

I decided to switch gears a little. I know I am in the middle of telling you all about my sons tongue reduction but life just really hits you with things sometimes. I think one of the main things with this syndrome is that to others it is silent. Unless there is a visible problem with your child, people think nothing of it. By all accounts, Owen looks like a normal child. We were blessed in that sense. He was not born with the need for a tracheostomy or any surgery right away of any kind. Yes, he had tongue reduction surgery at 7 weeks, but since then, most things on the outside have been great. People that don’t know about this syndrome don’t understand the emotional toll it takes on a parent. I currently am in tears as I write this. I feel like if I express myself in writing that it will somehow help me cope. People do not realize that the unknown is the scariest of all things. At least once you have a finding or a diagnosis of some sort then you can at least start to accept it and come up with a plan on how you will deal with it. Currently, Owen is 10 days away from his next scan and I am falling apart. I am in tears just looking at him because I don’t know what his scan is going to show and I can’t imagine my child having a life threatening aggressive form of cancer. I watch my son play and smile all day long and all I can think about is if his belly looks larger then normal. If it’s harder than normal. If there is anything out of the ordinary for him that would cause us to get a diagnosis of cancer. This syndrome is a roller coaster of emotions no matter what stage you are in. Whether your child is 5 or a newborn. The fear is prevalent and as much as we try and be strong for our babies sometimes we need a corner to go and fall apart in.

Last night I changed Owen’s diaper before bed and as he smiled up at me all I could do was cry. I can’t tell you why this emotion hit me like a ton of bricks in that particular moment but it did, and I think it happens to parents more then people think. I sobbed over him as I tried to get his night time pull ups on. As he smiled at me, all I could think of was his scans in the next two weeks. The fear of them coming back with something concerning on them overwhelmed me. I held him before bed and sobbed and he did the most amazing thing. He looked at me and stroked my face. This is not something he normally does. Normally Owen is a fighter and feisty and very rough. I think he knew in that moment that my fear for him was so great. I could not get a hold of myself. I find myself going through this roller coaster every three months. We will go to a scan and it will be clean and then I feel happy and on top of the world. Then the next scan is looming and I am falling apart. Please tell me I am not the only BWS parent that is feeling this way?! I try so hard to be a rock for my children, especially Owen, but the thought of him having cancer destroys me. It hits me at my core. I instantly start to unravel and I can’t gain control of myself. Why is it, that he could very possibly have cancer at this very moment, yet he is smiling up at me and I am in tears? Why can he be so strong in this moment, and I am tearing at the seams. I want so badly to be the strength that he needs, but I am starting to realize that things are reversed. He is my strength when I am falling apart. My son has yet to fall apart. He has taken his diagnosis head on with a smile, while I have faced it with fear and tears. How is that for backwards?! It is very true that we find strength and courage in the most unlikely places, or should I say people. You know where I find them? In my son…

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