We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.
It can be an all-consuming job.
When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.
There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.
There is also the battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.
This is a war my daughter and I are fighting together. Each on our own road, but we are battling the same enemy.
Like in every war it is inevitable that there is collateral damage.
Today was the 3rd grade play at my daughter’s school. It was also “Family Fun Day,” where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.
It was about 82 and sunny here today. The weather hasn’t been this perfect in weeks.
And I, I was at work. My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.
How is this all connected? Very easy.
If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.
Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.
I got permission to go in an hour late. I got in to see the dress rehearsal of the show. I stole 10 minutes on my lunch to drive by the park. And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.
She is such a good girl. “Don’t worry Mommy, I understand. I am so glad you are feeling better, and I know you need to get back to work. Maybe next year we will all have less surgeries, and then you can come?”
Collateral damage – my girl having to grow up so damned fast.
I really do hate this disease.