Friday, August 2, 2013

Social Aspects of Mothering a Child with a Growth Disorder- A Parental Perspective

How do you like my title? It is an ode to the ZILLIONS of medical journal articles I have read over the last two years.

There are three fundamental sociological factors that make mothering a child with a growth disorder unique to the parent. from my perspective...

1. The Child is Smaller than Other Children and Other Parents Respond Differently to You.

I have found that other mothers take note quickly that Mimi is way more petite than their child. They often ask me was Mimi premature, or does she have Celiac. Does she need more milk? They do not invite me to play dates, as they wonder, maybe I don't feed Mimi, or perhaps she has an illness...both might spell trouble and be too awkward.

While this is happening, I am fascinated by how LARGE your baby is. I'm thinking he or she must be heavy to carry around, and I'm also feeling sad for you and all the other parents in the room. How fast their babies are growing! Look how large all their feet are! I know that I can carry my little one so easily, she's so light! She's given me lots and lots of time, extra months of seeing that sweet immature face, and holding those dainty hands. There is nothing sweeter!

2. The Parents May Suffer from Exhaustion due to Feedings, Dr. Appts, and Questioning.

Imagine the baby first year happening over and over again. Like year after year. Imagine worrying what and how much your child eats constantly. Well maybe not constantly, but like an clock that dings every one hour and fourty five minutes. Often times children with growth disorders are hypoglycemic. They might not eat, or they might eat a lot. Each bite counts. Every Single Bite. You may know to give night time feedings or be ordered to by one of the five doctors your child sees to feed at night. Your child might need a feeding tube or there might be talk of getting a feeding tube. You'll be responsible for logging food for three days throughout the year. You'll be packing food constantly, and seeking out foods that aid in growth, that are full of protein and even fat. You'll make doctor appointments every week. You'll have to look something up every day. A symptom. A specialist. Pros and cons of a certain medication. You've taken on a part time job without realizing it. And by the way, everyone you know thinks you might be a little bit...crazy.

3. The Parents Must Become an Advocate for the Very Small Child. A New Challenge.

This week, I told off a four year old boy at the library. He was hovering over Mimi while she used the computer. She logged on. Hit OK to start her session. She selected Dora. She selected Dora ABC. She began to play. And little boy, decided that Mimi must be a baby. She must not know how to use the computer and so he decided to play her game for her. As she yelled at him using her "words", he stared at her blankly and continued to hover over her hitting the keys. I told him, "Please. Really. This is her time. Please, I SAID STOP." At that he finally went away. and I realized I no longer cared who might be watching me scold someone elses four year old. I've graduated from Parenting 101. I'm onto Parenting 108 or something. I'll say what I need to say to let Mimi do what she needs to do. And I don't care if you are four, thirty four, even eighty four, or if your mother is standing right there. 

1 comment:

JS LC said...

Well put, thank you. My little girl is rss and I laughed, and sighed, in recognition of all those moments. I constantly find myself staring at other babies feet in amazement ;)