When your Facebook feed shows you your dead child having a great time year after year, wearing the costumes you made her, it gets hard to breath through the wave of tears. Those outfits are still in her closet, but she will never touch them again.
We are trying to work through our grief, to challenge ourselves and don’t fall into the trap of avoiding situations. Some days are easier, but I still have hard time seeing ambulances on the street and every time I see the Critical Care unit I just loose it.
We are yet again approaching the season of painful reminders. Couple days ago we lit the candle on the third anniversary of mom’s passing. Today we should be festive, but I feel anything but joy. Our plain, untouched pumpkins sit on the doorsteps, J wanted to do some fun projections through the house window, but I know as much as he does that will not happen. He said it on our walk through the decorated neighborhood, feeling all light and optimistic for a short moment. Then the reality hits and we barely have energy to somehow get through the days with nothing left for pretending normality.
We are getting quite good at pretending, some days our acting skills almost convince ourselves, but some small slip (like disconnected feeding tube dumping all his food into our bed) always gives it away.
The other day we were so convincing in our act, that our friends recommended us to try a spa together. She described a lovely day with a massage and hot and cold pools. People just lounge and they are not allowed to talk. Fist I truthfully suggested that for me to be silent with my thoughts is not a good place unless some calming or numbing drugs are included. She sweetly assured me that there is plenty of people watching opportunities to entertain your brain. She said they spent six hours there without even realizing it. She was so convinced by our blaze act that she completely forgot that we no longer have a (now would be) 10 year old that can stay with friends for a day (just like they do), instead we have a 18 months old blind epileptic limp baby! I lost it and jokingly added that we will consider it in three years or so if we qualify for some respite funding… The awkward silence following was my punishment and I felt bad for fooling my friends and punishing them for trying to go along with the charade. I hope they can forgive me, you know who you are (I hold no grudges, I’m so thankful that you are sticking with us no no matter how much chaos and pain with bring into this relationship. We try to not let jealousy poison our hearts, even thou you will one day enjoy retirement with grown independent children, while we will take care of our baby until we take our last breath. And we hat burden gets hard to carry, I hope you can understand.)
So sitting in my kitchen on dark rainy Halloween morning I feel sorry for myself yet again. I’m running through my head some projects I would like to finish, so I can feel ok for a while. I’m starting to run out of house improvement projects and that is not good. Don’t worry I can always paint something and move furniture around š
I don’t know if I will dress Mr T up tonight, but I will give out candy and smile and have a good time seeing all our neighborhood kids dressed up. But when the pumpkin lights are out and the doorbell no longer rings I will cry, because I won’t get to beg my kids to share some of their candy with me…
ktojoy 