Choosing a career in fundraising and politics was no accident. This was a well thought out, wildly inventive plan to stay as far away from all that involved anything medical. I don’t think my dad ever secretly wished that I would follow in his footsteps and choose to be a physician, in fact he would tell you that law would be my passion and the courtroom would be home to me much like the hospital was to him. Mornings were spent with full color medical journals open and spread across the breakfast table as Mom would hand me a bowl of steaming hot oatmeal that somehow resembled the picture staring back at me of an open head trauma that Dad was studying. It was this scenario that played out for years of my childhood that brought me to the realization that I just didn’t have it in me to spend my days patching people up. This would come to include myself and my children.
When I was 4 years old I bit the pediatrician for trying to give me a shot; I like to think I am responsible for doctors deciding that nurses would be best administering vaccinations! If I scraped my knee, cut a finger well I was dying … no really it was that bad! The very site of a needle would cause me to reach out to the nearest wall to hold me up and if a drop of blood should grace my sight it would take days to recover. Even listening to my dad discuss his day sent me to my room, hiding under the covers with a pillow over my head!
I have no idea how I made it through childbirth; I kept my eyes closed the entire time! Nathan was an easy baby and child and fortunately was not a daredevil so the scrapes and cuts were kept to a minimal. But when Elizabeth was born and the reality of how hands on I was going to have to be with her medical care I thought for sure I would never make it. For months I spent every hour of every day next to her tiny bed in the NICU. I watched as doctors and nurses and techs would prick her tiny hands and feet for blood, the tiniest of tubes come and go from every inch of her little body. I could hire a nurse, I could spend everyday in the doctors office letting them give the injections, collect the blood for tests and change out the tubes. That was going to be my plan ….
It was a Friday night, about 9:30 and I was sitting around a table with a group of friends at our favorite restaurant when I heard a text come through. When I looked and saw that it was Elizabeth’s stepmom I knew it couldn’t be good news. The text read that Elizabeths mickey button that we feed her through had split and needed to be replaced. My first thought was I have had 2 glasses of wine and wondered if this could wait until morning, my second thought was I have had 2 glasses of wine and the courage I had given myself to think I could change it in the morning meant I probably should not have a third glass! Elizabeth had finished her feedings for the night so this could actually wait until the next morning, which was a good thing because I needed the night to figure out how in the world I was going to do something I had spent years letting the nurse do for me.
I came home and found the box that I carry every several months to the clinic and hand to the nurse as I sit quietly and watch (not really) as she pulls out the button leaving a gaping hole in Elizabeth’s stomach and then pushes in the new button. The entire process takes all of 3 minutes although it takes me about 20 minutes to be able to stand up with enough steadiness to safely drive Elizabeth home. As I stared at the box all I could think of was I had to know someone that could do this for me. We could go to the ER, an after hours clinic … maybe my dad could do it. My stomach tossed and turned as I opened the box and closed it as quickly as I could and went to bed; morning came extremely too fast. I made a cup of coffee, grabbed the instruction sheet and told myself I could do this. Each step was numbered with colored pictures. I assumed that everything I would need would be neatly packed inside this box of supplies so I was surprised when I got to the “things you will need” part and quickly shut the box again. There were 2 things that did not come with the box. The first and easily accessible was a bottle of water. The second was going to become the foundation for dinner time entertainment for months to come … water soluble lubricant
This was going to require a trip to the local drug store, which I carefully mapped out would be the farthest one from the house and ruling out the possibility of running into anyone I would know. I grabbed the box, gathered the from home supplies I would need, the last bit of courage from the wine I had had from the night before and headed out. I had already decided that I was going straight to the back and ask the pharmacist for water soluble lubricant, with the instruction booklet in hand and open to the page of what was not provided. I was met by a kind, older man who told me that I didn’t need to buy that from behind the counter, just head over to Aisle 7 and grab a tube of K-Y Jelly, he said this with such ease. The very thought of walking down Aisle 7 was more intimidating to me than changing the feeding tube itself. So I asked the pharmacist wasn’t there some little silver packet of lubricant behind the counter I could purchase all the while showing him the detailed drawings and assuring him over and over and over that this was really for the replacement of a feeding tube of a 12 year old. Again he said, go on over to Aisle 7 … oh but be sure to get the original and not any of the fruity, tingly ones. This time I shook the booklet at him and said … feeding tube, it’s really for a feeding tube.
I was so distraught as I began to walk through the aisles of our local Walgreens. All I wanted was a little silver packet of water soluble lubricant, and whoever packaged the feeding tube kit should be more considerate of my I am super embarrassed to buy K-Y Jelly state of mind. As I slowly walked by Aisle 7 acting as if I was looking for something else I heard it. At first I was relieved because I thought I had been dreaming this entire time and that I would wake up and find there was no text message, no split mickey button and no need to buy water soluble lubricant. Then I heard it again and I knew I was having a nightmare.
” Walgreen’s associate to Aisle 7, woman needing help with K-Y Jelly ”
I spun around one way looking for any sign of another woman. Then I spun around the other way and looked up to find I was definitely the only woman standing directly under the largest number 7 I have seen. I waved the instruction booklet over my head and said much more loudly than I should have …. It REALLY is for a feeding tube. Before the associate could get to me I grabbed the first tube I came to and then a bag of licorice, a diet coke, a package of mascara and finally a magazine. I threw it all up on the counter hoping the woman checking me out would not pay attention to any one particular item I had picked up. As she scanned each item I heard the comforting beep as it passed over and into the plastic bag.
I gathered my items and what dignity I had left vowing to write a letter to Kimberly Clark with a strong recommendation to include water soluble lubricant, just a little silver packet and headed out to change a feeding tube, which by this time was going to be a walk in the park compared to what I had just put myself through. 3 minutes later Elizabeth was equipped with a new button that I had changed all by myself without turning white, finding the nearest wall to hold myself up on or passing out. As I left I opened the trash can on the side of the house and tossed the tube of water soluble lubricant in. The thought of being pulled over for speeding with a tube of K-Y Jelly on my front seat was more than I could handle after the mornings activities. I pulled into my garage, a smile on my face and patting myself on the back for my proud accomplishments knowing that I could now change feeding tubes on my own when I realized …. I’m going to have to buy another tube of K-Y Jelly.