Yesterday I shared my frustrations with FPIES and my wish for my family to be normal, food-wise.
But let me tell you about the rest of the day…
Zac ate salmon at 9:00 a.m. He never showed any signs of a reaction to it whatsoever, for which I was grateful! That means it was histamine or a small virus that made him sick last week.
However, the kiddos were absolutely rotten all day long.
After speech therapy, we had a few errands to run in town. The first stop was Target, where they argued with me constantly, raced up and down the aisles, whined and begged for every little toy or doo-dad that caught their eye, knocked each other over in typical rough-house brotherly play, and generally embarrassed and exasperated me with their behavior.
Even the threat of NOT going to Barnes & Noble to play with the train table didn’t straighten them up.
Unfortunately, I really wanted a book yesterday, and I’m flat tired of my wants always coming last in the family hierarchy. Mama was GOING to get her book, even if it meant rewarding the kiddos when their behavior didn’t warrant a reward.
I did, however, inform them that they had knocked their usual one hour of train time down to half an hour.
As we approached Barnes & Noble, I noticed that Petco was holding an adoption day for the local no-kill cat shelter. The boys miss their kitty cats and love seeing animals, so I decided to be incredibly nice and let them go say hi to the kitty cats waiting to find new homes.
Besides, I need to scope out new cat food and kitty litter that will be safe for Zac, since we will soon need to bring the cats back home. This was a good chance to do that.
If I thought being given such a treat would make them grateful and behave beautifully, I was wrong. They were WORSE in Petco than they’d been in Target.
While looking at kitty litter, both boys were standing right next to me. By the time I’d stood up and turned around, they had disappeared.
Since it had only been a moment, I figured they were one or maybe two aisles away. So I called for them.
“Jed? Zac? Come here, boys!”
No answer. No noise, even. No giggles or even a belligerent “WHAT?” from Jed.
Nothing.
I started walking, calling for them as I went.
Nothing.
I walked faster. I called louder.
By the time I made it to the front of the store, I was SCREAMING their names, and still getting nothing in response.
By this point, other customers in the store who had seen me with the kids were chiming in with “I saw them over there a minute ago” and “I think I saw them heading that way”, but no matter which direction I was aimed, I couldn’t find my children.
To say I was panicked was an understatement.
I honestly didn’t fear abduction; most people are good and generally protective of children. It happens, sure, but it’s rare.
The far more likely scenario would be that the kids had taken advantage of the automatic door at Petco and left to go to the bookstore. Unfortunately, there is a huge parking lot out there that is laid out poorly. It’s a death trap for small, inattentive children.
Just as I was racing to head outside to look for the boys, an employee yelled to me “Hey! They’re over here!”
And he was right.
Not 20 feet away from the front door, where I’d been standing, screaming their names at the top of my lungs, and hidden behind a fish tank, were my two precious little hellions angels.
I raced over and grabbed them in a breath crushing hug.
Then I unleashed my fury.
“Didn’t you HEAR me?? Why didn’t you answer me? You DO NOT run away from me in a store. You DO NOT hide from me in a store. You WILL answer me when I call your names! You scared the LIFE out of me! I didn’t know where you’d gone! What is wrong with you?!!?”
They looked appropriately chagrined…for about two seconds. Then Jed grabbed my hand and said “Come here, Mommy! Look what we found!”
<cue Mommy beating her head against a wall>
We immediately left the store, of course, but I was still determined to get my book. It didn’t take more than two minutes to find my book, but the boys made it clear in that short time that they were very displeased with not getting their usual long chunk of time at the train table.
And they did so very embarrassingly, very annoyingly, very LOUDLY.
We drove home, and the entire time I was thinking “What is going on with the kids today? They’re acting like barbarians!”
It didn’t improve at home.
After Darrel came home from work, he quipped at the dinner table, “You know what, hon? I think I have some work I forgot to do. I should probably go back to the office.”
I knew he was joking, but I was not amused.
Jed was acting a fool at the table, laying down on his chair while eating, sticking his feet in the air, spinning around in his seat, rocking side to side in his chair to see how far he could go before he fell, etc. Every five seconds either Darrel or I would say “Jed, sit still!” to no avail.
Suddenly Jed froze in his seat. His eyes got wide, he opened his mouth, his face started turning red, and then his eyes began to water.
He was choking.
I leapt from my chair, but before I could grab him he suddenly coughed.
Just as I started to relax, he stopped coughing and began choking again.
I grabbed him and started to pick him up to Heimlich him, and he began coughing again.
So I sat him back down in the chair and smacked his back a few times to help dislodge his food.
He finally coughed it up and turned to me with fear on his face, and leapt into my arms for a big, reassuring hug from mama.
I told him, “Baby, we tell you things for your own well being. I love you so much, sweetheart, I don’t want anything bad to happen to you.”
With his face buried in my shoulder, my sweet Jed said “I love you, too, Mommy.”
And in that instant, the entire day melted away.
The thing is, there have been some tragic losses in my circle of friends lately.
Just a few weeks ago, a friend of mine lost her baby boy. It was sudden and unexpected, and she is naturally devastated. Yesterday morning I learned that the first granddaughter of some good friends of ours died at a mere week old.
So I was already a little raw when we started the day, feeling the peripheral heartbreak you feel when someone you care about goes through such an incomparable loss.
It’s gut wrenching. It’s beyond my comprehension how these families are coping with this. There’s nothing I can do for them, either. Nothing but time can heal this sort of wound.
All I can do is pray for them, and send them my love, and try to think of things I can do to show my love and care, and give them time and space to grieve.
My heart breaks for my friends, but I admit I had a moment of “Thank you, God, that my children are alive” when I heard of their losses. Far more focused on praying for my friends, I really only took a moment to toss that little prayer out for my family.
Until Jed started choking.
Then it hit me like a ton of bricks.
I am blessed beyond measure.
My children may not be normal. They may have food issues that threaten their health. They may have food issues that make functioning in the world a challenge. And, frankly, on occasion they behave like wild animals in public.
But they are HERE. They are breathing. I can hug them whenever I want.
When I think about Jed’s birth and the subsequent NICU stay, the hospitalizations he’s had, the mesenteric lymphadenitis, Zac’s horrible hospitalization, Jed’s choking last night and the pain my friends are experiencing, well…
I’ve never been so grateful for ‘not normal’ in my life.
Yesterday I said “This is our life, and we will continue to manage it.” That’s true. It is, and we will.
Only now, I am incredibly grateful for every moment of our ‘not normal’.
