As you reached over and pulled me into a tight hug at bedtime, I held you close and realized how well you are doing. I no longer hug you tightly and only feel bones. Your hands have a little more padding to them. There’s a layer – albeit tiny – of body fat between my hand and your ribs. You are growing taller every day, reaching new heights and forcing us to put certain items higher to keep them out of reach.
I remember when you were starting to fade away. Your ribs protruded from your tiny body (the picture above was taken long before it got scary). With every food you eliminated from your diet and every meal you refused, you became less playful and more lethargic. You were always a thin boy, but you became underweight and malnourished. I tried everything. I was desperate.
I remember calling that Thursday afternoon last summer and telling the GI office that you had refused to eat anything. You only wanted to lie down and rest. My adventurous boy, who normally wanted to run and climb and jump, only wanted to rest. When they told me they were going to admit you to Children’s Hospital of Wisconsin in the morning, I was scared.
There you were, so weak and tired, hair so fine and thin, body so tiny. My mind clicked into survival mode and hasn’t stopped since.
But tonight I realized that even though we still operate in survival mode, it isn’t as terrifying as it once was. That g-tube was a gift from God. Your medication for gastroparesis and reflux, your therapists, your organic blended diet – these are all gifts that have brought you so far. We still have a long way to go. I am determined to get rid of that tube for you, baby. It’s going to take a lot of time. Probably years. But we will do this.
We’ve come so far.
My bright, quick-witted, humorous, handsome boy. I love the way your eyes dance when you smile. You smile a lot now, and I am more thankful than you may ever know.
Linking up with Things I Can’t Say for Pour Your Heart Out.