Food

Our society is centered around food. We need it to survive. We receive pleasure from it. It acts as a vehicle to strengthen our social relationships. Some people even seem to enjoy the act of preparing it (rest assured I am NOT one of those people ;) Food is everywhere around us and yet we barely notice it. I mean we all get hungry and I certainly love eating, but I never thought about how pervasive food is. In many ways it defines a person. When we first meet children we often ask them what their favorite food is along with their favorite color and hobby--as if it is an aspect of their personality. Our friends share favorite restaurants and couples share favorite meals. Food, simply put, is a big freaking deal.

So what happens when your child doesn't eat? The reality that is so much a part of everyone else's world slips away from you. You lose that part of their childhood--until they can eat once again. You see other people breastfeeding their children and a sharp pain stabs you in your gut. You sit with your husband in a restaurant and watch a happy couple feeding their child and you are reminded in one searing flash how different your life and your child is. And it hurts. Badly. But it's something you must get over. It's something you must try to smile thinly through and say, "What a beautiful baby you have" or "How nice to breastfeed" or some other comment that just might distract you long enough to forget that pain, and to hide it from the rest of the world, because after all...it isn't their fault that their children eat. But I must say when you hear parents complain about how messy their kids are when eating, or how fussy they get, or how much work it is, a tiny bit of fury might escape your lips later when venting to your spouse.

At one time Ruby used to love to eat, but her body could not handle food. Every time she would breastfeed or drink from a bottle, she would have 3 hr long episodes of reflux that choked off her airways, and burned her throat and nose. It was horrible. There are two things newborns enjoy: sleeping and eating. And one of those things were not working for Ruby. Because of her strong will to live she craved food and just loved eating...but as I said, her body didn't agree. Her body became so tight and stiff during her first 2 months because every movement she made would cause reflux. It was heart-breaking. She had only a handful of moments when she was awake and not in pain during those first months. And usually those were the times she was NPO (not allowed to eat) before a medical procedure.

It became clear that we had to feed her intestine instead of her stomach. But even throughout that time we would try "practice feeds." 5 mL bottles were all her tummy could handle before that horrid reflux would set in. At first she was still so hungry because she was not used to her belly being empty. But gradually she became used to it, and little by little lost interest in food. We worked with the feeding therapist but she started eating less and it became more of a chore to get her to take even 3 mLs.

I cried so many times when she began to lose interest. I remember a time when we all joked, "She loves to eat! She sure is a Tylenda!" We were so impressed that in spite of her reflux she still had to desire to feed. But as I said, that began to taper off as time when on. She still loved her binky and we encouraged her to suck. However, after her open heart surgery she was done. I guess it was just one too many suctionings or one too many intubations. She just didn't want to eat or suck or anything. She began to gag and retch. It was very hard to see. I missed feeding her so much. I missed watching her for signs of hunger. I missed her needing me in that way. She had learned that things that went into her mouth, especially things that other people controlled, were always bad scary things. At the stage when oral exploration is virtually the only type of exploration she learned the exact opposite of what a healthy child would. When this happens, it is said the child has an "oral aversion." And let me tell you, that is hard to combat!

But to my very surprise Ruby is combating it. She is fighting this aversion as she has fought every other medical battle and she is winning. And I am so proud of my little girl. We sit at the table and I lift a spoon to her mouth and miraculously she leans forward to take it! This is trust! She is trusting me with the thing she fears most and I love her so immensely for it. She is not eating yet, not really. She is definitely not anywhere close to being able to sustain herself. But she is tasting. She is challenging all she knows about oral experiences because...well because she is the most amazing, most brave, and most determined person I have ever met. And I could not be more proud to call myself her mother. What a child I have! What an amazing little spirit!

So now I go out to restaurants and my child puts on a bib. She gets to sample things from my plate. I get to spoon her food and tip the little spoon up so that some of it actually gets in her mouth. She gets to have tomato sauce all over her arms. She throws food on the floor. She rubs her soupy mouth all over my shoulder. And I love every second of it! So if your kids take forever to eat, are fussy about food, or make an insane mess, just remember to try and enjoy it. You are so lucky! But you know...I guess I am too! :)