Acceptance

“God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.”

Acceptance. I struggle with it every day, and just when I seem to have a grasp on the situation, I find myself stumbling around in the darkness once again. Have I truly accepted Carter’s dietary limitations? Have I accepted the fact that this day – to – day is mine, for better or worse, forever? Have I truly learned the difference between what I want and what I need?

Last night we had a great family dinner at our house celebrating the birth of our newest niece.  It was a great time! We moved Carter to the kitchen island to eat so there was no worry about accidental ingestion. We even made him some Carter safe Chex mix: 3 Corn chex, 3 T. safflower oil, ½ t. salt, ½ t. garlic, ½ t. onion powder and a ¼ t. paprika. Carter loved it! He probably ate about a cup of it. He was running around and having a really normal time. I was so happy watching him play like all the other kids.

Shortly after we put him to bed, the coughing started. It was that horrible wet, drowning cough. I went in and gave him his inhaler in hopes that it would settle the cough. When I picked him up out of bed, he couldn’t hold his head up. It was like watching a newborn baby with no neck control. When he did open his eyes, it was only to watch them roll back in his head.  I sat with him in the rocker until the cough stopped and his breathing grew steady and even. I was praying that this wasn’t the start of a reaction, but my mommy instinct knew better. I laid him back down and tiptoed out of his room. All was quite for about 10 minutes until the cough started again, but now it was something more. I ran upstairs to find him laying in his own vomit, too weak to move. His breathing was fast and erratic.  I got him out of bed and his eyes were totally unresponsive. I waved my hand in front of his face and it was like he was seeing right through me.

So he was having a reaction, and there was nothing I could do for him. I cleaned him up, took off his jammies and brought him downstairs. My husband and I watched as his mood went from lethargic and unresponsive to overly hyperactive and obsessive. He was running around the living room at full speed, talking non-stop. His breathing was still really fast and he was shaking all over. We picked him up, put some new jammies on and tried to calm him down. All he could talk about was the cat. It was the same sentence over and over again. The same actions, the same tone of voice. He would pat our arm several times, point to the cat and say “Kitty, kitty”. It began to get a little unnerving. It was like someone had turned his power button all the way up and he had no way of turning it down.

After a while, he started to get a look of panic and fear on his face, “Mommy, what’s happening? Help me.” He switched from a manic up to a sadden low. Now he was crying and scared. All of this lasted for over 3 hours. It was nearing 10:30, so I decided to try and put him back to bed. It was then that I realized that his beloved blankie was covered in throw up. I knew that without it he would never sleep. It was going to be a long night for sure. I laid him down in bed and went to throw the blanket in the washer.  By the time I got the blanket rinsed off and in the washer, he was asleep. I do not know that it was sleep as much as a collapse into unconsciousness. He slept the whole night, not waking until 8am this morning.

I look now, at the recipe for his Chex Mix, and it shakes me. It is unsettling to think that the small amount of spices he had, whichever one it was, caused such a scary reaction. I cannot pinpoint exactly which it was, but figure that it must be from the mix. Nothing else makes sense.  

So today I am learning to accept that there are things that are going to happen to Carter that are out of my control. I am facing the reality that I can’t really be too overly protective about the foods Carter eats. I had hoped those spices would be safe, since he had them before we even knew about FPIES. I cannot say for sure what he reacted to, but it is the only thing that I can make a connection to, but it is one I wish I didn’t know. It is another dead end in this maze, one that reminds me how serious and REAL this illness really is, and that I must accept that I have to do what it best for Carter, always.