Any one who has worked with Elijah over the years..nurse, therapists, friends and family know that one of the biggest struggles that he has had since he came home from the hospital with us is oral aversion. Elijah has a g-tube and does not eat anything by mouth. All of his nutrition and fluids are given to him 4 times a day through a tube. Occassionally he has taken tiny sips of water over the years, but our success has been limited.
There is a process that occupational and speech therapists use to help kids gradually be able to tolerate oral feedings. It is a slow and tedious process that takes into account all of the properties of food and fluids...the smell, the texture, the temperature and the density. It is a long process, but can be very effective. For many years, Elijah and a caregiver (his nurses or one of us) have sat at our dining room table three times day...introducing foods and hoping and praying that there would be a breakthrough and Elijah would let go of his fear of eating, swallowing and drinking liquids. But over the years, he was able to bring food to his mouth...and sometimes even suck on it..but he had not gone as far as swallowing anythigng.
Oral aversion can be difficult to overcome for any child who has had a gtube. But add the autism on top of the other issues, and it can be nearly impossible for some kids. And that is where we were at just about 2 months ago...I really thought it was time to stop trying. Parenting a child with special needs involves prioritizing. There are so many needs and not all of them can be addressed at one time. We had decided that Elijah's communication skills would need to be a priority going into the transplant and that we would back off on the feeding therapy. And then, out of the blue...
He started drinking water last week! This morning, he drank about 2 ounces!!!!!!!
He says, "Water--it's perfect!" with every sip...what an unexpected blessing.
"Every child has their own timing.." We hear that often as parents of special needs kids...sometimes it is comforting and other times, it seems hollow. I have always wanted more than that...I try to read between the lines...I wonder if the therapist or doctor knows something I don't and they just don't want to crush this fragile parent by telling the whole story.
The reality is they don't know either. But, for a fleeting moment, I wish God would just let me know the future so that I could prepare my heart...but when I look back, I am SO grateful that I was not given that view that I so wanted...the weight of the reality of my child's disability would have been crushing all at once. Instead, God has allowed me to see just what I needed to see when I needed to see it.
Today I have seen a glimpse of renewed hope...for Elijah's future. Not only is he drinking water, he also is communicating so well! Today he called the nurse to tell her, in a compete sentence, that his TV wasn't working and that he needed someone to fix it. It didn't matter that he called her about 8 times this morning asking her for water even though it was right by his bed---he told someone exactly what he needed and that is so beautiful it brings me to tears.
And as you can see from the picture below, he hasn't lost his sense of humor! Meow is drinking water also..and the nurses wondered why Meow's nose was always wet!