Over the past two weeks I have bombarded with "QUESTIONS"! The funny thing is....it has been from family or friends or those who are interested in Madilyn's life. They have all been from Madilyn, my sweet 6 year old who has Spina Bifida for those of you who may not be familiar with her.
My husband and I were discussing our July calendar two weeks ago. Madilyn has lots of appointments before she starts back to school August 2nd. Before I could finish marking all the dates, the questions began.
"Mom, why do I have to have surgery again?", "Mom, why do I have to go to the doctor so many times?", "Mom, why do I have to put the "cath" in the hole in my belly button every night and why can't we skip a day?"!
Then we moved onto statements....."Mom, if I have to have surgery again and it is school I am not doing it!" "Mom, I want to be at school for picture day this year and I am not going to the doctor and missing it again!"
I really didn't know what to say or do. I just listened at first. Then it hit me.....
I started from the beginning and retold Madilyn about when she was born. I explained that she has a very special body that requires lots of special doctors to care for her. I reminded her that each doctor takes care of a part of her care when we need them. I also told her that right now we are not sure what our next surgery will be or when or if she will need one. I have repeated this several times during these past two weeks.
Madilyn know she has Spina Bifida. She can tell you who takes care of each part of her body. She can tell you all about the "zippers" a.k.a scars on her body and what they were for. She can tell you about flushing her bowels nightly and "cathing".
During this experience with Madilyn, I realized that she just needed some reassurance from me. A reminder that no matter what we have come up, their are those who will care for her and things will be ok. We can overcome the obstacles that are placed before us.
I hope that I have calmed her fears for now....next time I will be more prepared. Maybe we need to have this conversation over a bowl of ice cream! For now we will continue enjoying the summer sun and pool....I hope each of you are doing the same!