This was not the post I had intended to write. This morning at around 2:00AM Emma came into our room, her little body burning up. She nestled in between Richard and me. Merlin had curled himself into a tight ball near my head; it is not an exaggeration to say it was a crowded bed. This is the second time since my surgery that Emma’s been up in the middle of the night. What was once a nightly occurrence has, thankfully, become a rarity. By 6:30AM Emma was complaining about the right side of her abdomen hurting. She became more agitated and upset as the minutes ticked by. Richard and I realized we had no choice but to take her to the emergency room.
Once there, Emma seemed less upset and after we answered the thirtieth question about her medical history (for a ten year old, it is lengthy and extensive) went over all her various hospitalizations and the doctors we’ve seen, they decided to take an x-ray to determine if constipation was the cause of her pain. As I stood in the booth with the technician, whose nephew has severe autism and is non-verbal, I could see that constipation was indeed the problem. Not only was there a single enormous blockage, but her intestines were filled with stool.
Once again we were confronted with the question that has plagued us off and on for the last seven plus years. How do you help a constipated child, who refuses to eat little if any of the foods that will help her, see the connection? Or is that not the right question? When the supervising pediatrician came in to speak with us she gave us the same remedies I have been given by countless other doctors and specialists. This isn’t rocket science. It’s pretty basic stuff. But when you’re dealing with a child who has sensory issues, making it difficult for her to know when she feels the need to go to the toilet, along with fear from past painful experiences, add to that dietary limitations and an insistence on eating a dairy heavy diet, even though it’s gotten much, much better, you have a never-ending cycle that is very, very difficult to break.
“Let us be the bad guys. We’ll give her an enema, maybe you or her dad could help hold her down,” the supervisor told us. And as well meaning as she was, as obvious as her suggestion may be, I couldn’t agree to it. Having Emma held down by three or even four strangers while a bottle of saline solution is pumped into her, while she screams and fights is not going to solve the bigger issue, the issue that we have been dealing with for the last seven years with varying degrees of success – constipation.
“I know,” the doctor said, in response to my despair that we were once again being told the same thing we’ve been told by literally DOZENS of doctors. “I’m sure it’s very frustrating.”
“Actually frustrating doesn’t begin to cover it,” I said.
And it doesn’t. Frustration is the beginning of a great many feelings when you are forced to watch your child writhe in pain from something that is so heinous and frightening. Having just had surgery, having, for the first time had to personally experience the hell that sums up constipation, the pain, the fear, reminding myself to breathe into the pain and relax, I can relate to what Emma is going through in a way I never could have before. So I did the only thing I know to do. “Come on Em. Let’s go to the bathroom, I’ll stay with you, and then afterward we can go home.”
Emma took my hand and together we went into the bathroom where she sat with me crouched in front of her, just as I used to do every single day for so many years. This time I looked into her eyes and said in a calm, gentle voice, “I’m here with you Emma. I’m going to stay here with you. You can do this.”
“I know, it hurts to poop,” Emma cried.
“Yes. It does. I know.”
Finally she was able to let go of at least some of the stool inside her and after another 30 minutes, we left and came home. It’s not over, she’s still massively constipated, shes’ still uncomfortable. We will have to insist she not eat as much dairy. We will have to be more diligent about monitoring her. We have no easy answers. We have no quick fixes. But we will get through the rest of the day, just this one day, one day, one step at a time.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book