Preparing

A couple of years ago I made friends with a woman, M, that I had met in a support group for children with no foods. We had both been members of the group for a while before we realized that not only were we from the same town, but that we lived right down the street from one another! I remember thinking "Wow! What an incredibly small world!" We are used to being so very out of the ordinary where ever we go and to think all that time a fellow no food kiddo could have been standing in the checkout line next to us at the grocery store.

Her and I arranged to meet up, and chat in order to share our experiences over dinner and vent our frustrations a little. We've been doing this for a couple years I think now and its always a wonderful break. Talking with another mom that has all the same worries and day to day stresses that we do is something neither M or I get to do often.

M's daughter, R, is nearly 7 now and Lucy seems to always end up falling in R's footsteps. I joke with M that our friendship is so one sided since Lucy goes through much of what R does, but a few years behind. I end up learning from all of R and M's journeys and its been incredibly helpful.

R got her g-tube a while back and so the second I knew we would be getting one I made arrangements with M to stop in for a "tubey playdate". Lu played with R and got to see what the actual button and tube would look like, see that R was a perfectly happy, normal girl, and I got to hang out with M and learn all about the technical side of things. I feel 1000 times more reassured having gotten a hands on tutorial from an experienced tube feeding parent.

But what is most reassuring is to see R. She is a happy seemingly normal little girl, chattering endlessly about Zhu Zhu pets, playing with dolls, feeding her pet rabbit, riding scooters on the sidewalk. The fact she is no foods, often sick and in pain, and on a 24 hour a day feeding pump seems of no matter to her. Sure, she certainly has bad days- but when she has good ones they are filled with playdates and happiness, not sulking and crying because her life has so many challenges. On a day to day basis she doesn't dwell on the unfairness, feel sorry for herself, or get angry with everyone else for having food. She just keeps moving forward, enjoying everything she can.

This is the future I hope for Lu.