When we first received Kimber's diagnosis I thought we would never live a day without PWS ruling our daily life. Yes, we still have therapy and doctors appointments several times a week. We give nightly injections of growth hormone. We eat differently. I spend a good amount of time doing research and our health insurance is basically on speed dial. But this has all just become a part of our "new normal". I am happy to say Prader Willi Syndrome does not rule our lives and Prader Willi most DEFINITELY does not define our amazing little girl. That being said, there are days where PWS rears it's ugly head and reminds us that it is still here just waiting for us to let our guard down. This weekend we had one of those moments.
I was standing in the kitchen visiting with my little brother when Kimber walked over to the refrigerator, opened the door and helped herself to a bottle of soy sauce. I was shocked. In the next 45 minutes I pulled her out of the refrigerator 4 more times. As far as I know last week she was not tall enough or strong enough to do that. To be clear Kimber's hunger has NOT set in. This was just typical toddler curiosity. Any other mother would have laughed and maybe pulled out their camera to snap a few photos of their sneaky refrigerator raider. PWS does not allow us that luxury. PWS robbed me of normal. When Kimber went for the fridge the fifth time we loaded up in the car and drove the 25 minutes to our nearest Walmart for a latch. I cried in the check out line.
When we got home I installed the new safety feature. Within moments of having the latches in place I learned a few things:
1. Our refrigerator was not sealing correctly. Who knew?! Problem solved! :)
2. I felt an instant relief and a lift from anxiety I didn't realize I was feeling. It was also entertaining to watch people yank on the doors a few times trying to figure out why the doors weren't opening.
3. Securing the fridge does NOT mean that PWS has won or that we "aren't giving Kimber a chance". On the contrary, by locking now we are helping her establish the habit of asking Mom or Dad before getting into areas that have access to food. I was comforted to learn that many parents choose to secure the kitchen at this age to help establish these habits.
4. We have NOT given up hope for a cure. We believe that there will be a cure for the hunger experienced by those with Prader Willi Syndrome in Kimber's lifetime. We will not give up on this.
These latches can be found in the safety aisle of the baby section in Walmart.
This weekend we had to make some slight adjustments to our flight plan but we are back on track and doing well. Everyone is happy and healthy. We have always chosen to take life with PWS one day at a time and only worry about the challenges that are in front of us at the moment. We make changes to our lifestyle and home as Kimber needs it to keep her happy, healthy and thriving. We will continue to do so! PWS will not win!
Have you had to make the decision to secure your kitchen? How did you know it was time? Any tips in keeping food safe?