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.

Jealousy and the Diaper Bag

It’s a nasty word. No one likes to say it. No one likes to feel it and certainly, no one likes to talk about it. But, all the same, it’s there, green as ever, just waiting for It’s next victim. I figured it was time to talk about it because I know so many of us out there are feeling the same thing. Jealousy.  Envy.  Although we seldom talk about them, these feelings are part of the FPIES package, of any chronic illness. Most of the time, I ignore these feelings when I feel them bubbling up inside of me, but every once in a while I give in, and today is one of those days.

Something set me off today, a small something really. It’s actually very silly, but it’s just shown how different my life is now. I have been shopping for a new diaper bag, a bag that will allow me to take my entire house with me. Ok, not really! But a bag that will let me bring a full day’s worth of formula, 3 meals, snacks, 8 diapers, wipes, diaper cream, sippy cup, juice, inhaler, epi-pen, 2 changes of clothes, burp rag, and hold all of my stuff as well. Oh, I’m sure I’m forgetting some things too! Carter is 20 months old and I carry more for him now than I did when he was 2 months old. By now I should be downsizing to some cute, little functional bag that just held the necessities. Instead, I am trying to convince myself to spend $100 on a diaper bag to hold Carter’s supplies, which are his necessities.

I left the house once, without packing for the day and found myself stranded without enough diapers and no food for him to eat for dinner, simply because our plans ran a little over schedule.  I was reading reviews for the bag I am contemplating and so many of them talked about how this bag was too big and all they needed for their toddler was a zip lock bag to hold the necessities, because of course, as your child gets older, they need fewer things.

Carter is the exact opposite! As he has gotten older, he needs more things. I can’t just swing by the store or order off the menu to provide him with the food he needs. So yes, I am jealous of those moms who get to lighten their load as their little one gets older.  Do I like feeling this way, No. But it is a part of going through this evil disorder.  There are days when I’m sure I have it all together, until I see a child sharing some ice cream with their dad. Will that be Carter some day? It is impossible not to have those moments of envy for those parents who are dealing with “normal” toddler issues.

I know there are people who say that these feelings are wrong or unhealthy, but I must disagree. As parents, we spend all day, every day and sometimes even in our dreams, creating a safe, healthy environment for our children, checking and double checking food labels, vacuuming crumbs and scrubbing tables, sanitizing dishes and clothes, inventing new ways to eat the same food, scrutinizing every hiccup, wince, whine and tear, offering up every ounce of ourselves for FPIES to consume and realizing as we lay in bed at the end of the day, that we have nothing left for ourselves.  

So yes, there are days where I wish we were just dealing with tantrums and tempers, potty training and sharing, colds and clinginess. Times when I wish the terrible two’s were my biggest worries. As I wirte this, I think of my little boy, who is only eating Corn, Strawberries, Blueberries, Raisins, Apples, Sweet Potato and White Potato (Even that is a feat, compared to some of the other FPIES kiddos) And he’s happy!! He’s laughing and giggling and talking, I haven’t heard these sweet noises in over 2 months. His face is pink and chubby. His diapers are normal. He plays by himself. He sleeps all night long. How am I supposed to take that all away from him? If I trail a new food, that’s just what I risk doing. And I can’t just do it for a day or two. His reactions are a build up, so I have to subject him to weeks of a food that may ultimately fail. If it’s a fail, I will lose this little boy and it will take weeks before he comes back.  His language skills are already behind due to his reactions, and I risk pushing him further behind.

I will say this once and for all, Jealous and Envy play a big part in an FPIES parent’s lives, but it will not diminish our strength or courage to keep pushing through. It is just another dead end in this mysterious maze.