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.