Last night Mel and I went to eat at our local Cracker Barrel with my parents. We arrived at the restaurant at 6:15pm and it was time for Mel's dinner. I know that feeding tubes are different and that people do not see them everyday and they are curious, I get that. But I am sitting there with my family and my daughter trying to eat while also pushing Mel's food via syringe and at least 2 tables of ADULTS were just sitting there staring. not trying to be nonchalant or anything just legit staring.
Since Mel is only 15 months old she does not notice the looks, but someday she will. And it hurts my heart that someday I may have to explain to my daughter that she is a little different and that sometimes rude people don't know any better.
I have had a few people ask me what the tube is coming from under her shirt and let me tell you I just want to hug these amazing people. They want to be educated, they want to know so that if they see another person with a tube they will know that it is instead of staring and assuming there is just something wrong with the person. I love explaining Mel's tube, why she has it and telling our story. I want to advocate for not only my daughter but all the tubie children and adults in the world. I want to be a part in dissolving the stigma around feeding tubes and differences in general.
Some people ask stupid, rude and disgusting questions. When Mel was about 3 months old my mom and I were at the grocery store. At the checkout the cashier saw Mel's tube and promptly asked "Whats wrong with her" with a disgusted look on her face. I explained that it was a feeding tube and the lady responded with "poor baby." Umm no birch. first of all there is nothing "wrong" with my baby, she is perfect and we are blessed that she is even freaking alive. Second she is not a "poor baby" she gets every single nutrient she needs through this tube and she is growing like a champ! Although I said these things in my mind I still cried when we got out to the car. That was the first time something like that had happened and I couldn't believe someone would be so callous about a beautiful little girl.
There have been a few times since then that stares and comments have really gotten to me. But as time goes on I am more educated and able to really explain feeding tubes and also as I get older I just don't really give a shit about what people think. If you are new to tubie life, people will hurt your feelings, the stares will bother you and would will wonder if it will ever get easier. And I am here to say it does get easier. Yes there are times that I just want to punch people in the throat but for the most part I either try to blow it off or I try or educate that person.
Our children are perfect gifts from God and we know that. That is all that matters. But we are human, we have feelings and most of all we know that our children have feelings and Mel's are what I am most concerned about in this situation.
Have you ever had a situation like this happen to you? I would love to hear what your thoughts are on this topic and how you deal with less than couth people.
As always kiss those precious miracles, say a prayer and enjoy your evening wine!
Love until another day,
Shelbi
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