Last week I laid in bed with my iPad and was checking out the news before I fell asleep. I don't' recommend this for many reasons. #1 They say looking at the computer screen before bed prevents you from sleeping well. #2 You might get sucked in to reading the news and not want to go to bed. Or #3 which happened to me, you might read a story that hits you the wrong way and you begin bawling and have to go get one of your children to sleep with you.
For me it was the story about Michael Douglas and his throat cancer that hit last week. Michael made headlines when he told The Guardian that his throat cancer may have been cause by the HPV virus from oral sex. Yes that's a headline that probably gave some late night talk shows some good material (you can get cancer from oral sex), but for me it was serious and hit a big nerve for me.
You see, my son has RRP (Recurrent Respiratory Papillomatosis) which is caused from the HPV virus. This disease is very rare and fewer than 2,000 children get it each year. (HERE is the post when we first found out and HERE are all the posts about Deacon & RRP) The thing that's scary about RRP is that it can lead to throat cancer. That's basically our biggest fear with Deacon. Although there are certain types of HPV that are more prone to turn malignant, and Deacon's papillomas are low risk, it's still always in my mind. The doctor that does all of Deacon's surgeries has actually lost a patient with RRP to cancer and that rocks my world.
So, I'm laying in bed and the Michael Douglas story comes up and I begin the ugly cry all alone in my bed. Aaron was out of town, or he would have comforted me and told me I was foolish for letting a Michael Douglas story get to me so badly. All I could think about was “what if Deacon gets cancer?”, “what if Deacon dies?”, “what if we have to walk down the road of cancer with him?”. My mind went crazy and I allowed it to take over my thoughts.
So, I did what any rational mother would do in that moment and I went to Deacon's room, woke him up and asked him to come get in bed with me. He was groggy and confused, but he obliged and as I snuggled up next to him, I cried and his sweet curls soaked up my tears. I prayed and asked God to heal my son completely and to keep him from getting “bumps” ever again. This would be a complete healing because this disease has no cure and you never know when it will attack again. We are in remission now, and I begged God that this remission would look like a remission to everyone else, but would really be a healing. That those stupid bumps would never attack my sons vocal chords again. Ever.
It's funny how a stupid Michael Douglas story can bring up emotions that I haven't visited in a long time. Deacon's last surgery was Feb of 2012 and the last time bumps were actually seen during a surgery was Feb of 2011, and so these thoughts don't flood my mind until I see something like this that brings me back to realization that my son has a disease.
I'm reminded today that God is able to heal my son, and maybe already has. I'm also reminded that this is not our home, and one day there will be no more disease, no more surgeries, and no more sad nights laying in bed thinking about the fact that my son might get cancer one day. We will be with Jesus and there will be no sickness. Until then, I will try my hardest to fight my out of control emotions and remember that God has not left Deacon or us in a position where we are alone. He's always been with us through each doctor visit, surgery and is with us now as we struggle with the “what if's” of this disease.
Deacon was the first little face that popped into my mind when I heard that report too. Since learning about PPV from you and Deacon we have had our two teenage boys vaccinated. Living in a college town it amazes me how me young people are clueless about this disease.
Glad he came and snuggled!
Jamie, I’m praying Matthew 6 for you guys–His Kingdom come, His will be done on earth as it is in heaven. In heaven Deacon is whole and healthy. I am just praying that now, that heaven would come to earth in Deacon, that he would be whole and healthy.
Jaime I didn’t know this. I will also pray FULL healing for Deacon!!!
Our friend In Ireland has a 3 year old who had stage 4 cancer in every single bone in his body. He is completely healed and cancer free now.. God is in the business of healing .. You are a lovely mum!
Thank you for sharing. I am 12 and have RRP. I have had 15 surgeries so far. God has a way of using everything especially adversity to glorify him. So I used my voice, even that of a whisper to write. I recently wrote a book and now writing with my surgeon about the disease for kids and parents. Thanks so much for sharing Deacons story.