A Little Glow in the Dark - Thomas Party

My current song obsession is Jason Gray’s Glow in the Dark.  It starts with the following verse:

Sometimes the world feels like a mess

Full of drama, full of stress

And life puts a fist right in your ribs

You can hide if you choose to

And no one would even blame you

Or you can let them see how you deal with it

I’ve spent a year in a food allergy nightmare! The genesis a year ago was being taken out of Disney World with my son in an ambulance having a reaction to his birthday brownie! It has set off a deluge of unexplained or prolonged reactions, epinephrine injections, frantic rushes to the ER, and even multi-day hospitalizations. And for BOTH of my children. My world certainly feels like a huge mess!  Each blow took a little more of our normal lives away. And all I want to do a lot of the time is to hide and cry. I started out the year hopeful that I would return to blogging but I thought I would get back with my new attitude and a new year more because I thought the new year had to bring me better circumstances than the previous one. When my plans for health and happiness in 2015 shattered I went right back to hiding and surviving. That’s how I’ve spent the majority of this year. Just getting through each day. And that isn’t something I like to share. However, in an unfulfilled quest for answers and stumped Doctors I turned to the largest source of information – the Internet. I desperately hoped for mutual understanding! There was some comfort in reading other people’s stories and to know we weren’t alone so I’m sharing our mess story as well to increase the network.

Just like it’s dark, gloomy, and stormy outside right now that is this ever present cloud food allergies have cast over my life.  During one single recent week I was at 2 different ERs with 2 different children, spent 3 days admitted to the hospital with my baby, and went to 8 outpatient doctor's appointments. No one has answers for what is going on or why symptoms are persisting for weeks after a food exposure and it seemed like each intervention lead to a new complication.  It was nearly 3 weeks before my baby would stomach an actual meal and our time was consumed begging and bribing him to drink something to keep hydrated and giving him absolutely anything he wanted (that he wasn’t allergic to) to give him some nourishment. I watched this scene unfold on his birthday. The pictures of that day are of him in a diaper with a trash can next to him because he kept vomiting and his party had to be cancelled because we were in the hospital. It’s unfortunate that he is intelligent enough to comprehend the change in plans.  If you asked what he did for his birthday he would say, "Go to the hospital." Not only that but after all my kids have been through their thinking is all about doctors. Pretend drive a car and we are going to the doctor. I made these pretend cookies but they have cow's milk so we can’t have them or we have to go to the hospital.

During this rough week I also had to pull my other son out of preschool because we couldn’t successfully arrange for a safe and effective environment for him to participate. Facing the toll exclusion takes on a 3-year-old was unexpected and sad. I myself was ill prepared to fulfill my role as advocate, educator, nursing instructor, scheduler, nutritionist, and Mom to prepare the school, teachers, administrators, other parents, and classroom for his safe navigation. The reality that he couldn’t just be normal was probably what on top of everything else just shattered my heart and left me feeling like the world that every one else operates in really can’t be safe for my two little bubble boys. And to be fair their allergist warned me this would likely be the case. I just didn’t want to accept it. My life is being ruled by food allergies…

Doesn’t matter how deep how dark the night is

Keep hoping, keep on shining

And they’ll see His light burning in your heart

And if the road gets rough, just keep your head up

Let the world see what you’re made of

That His love’s alive in your deepest parts

Like a flame, like a burning star you can shine right where you are

He made you to glow in the dark

And there were a few things I came to realize.  First I know my kids deserve so much more than I can offer them. I’m a computer engineer – medical stuff is not my specialty.  Why would I be given these sick kids?! But I know that I love them more than anyone else in this world. No one else would be willing to do what I do for them because they aren’t their Mommy. It takes that kind of love sometimes. So they are stuck with me.  And by the way I’m all they want when they are sick so they seem to be okay with that.

I also decided that although I can’t change their allergies or the fact that my baby was sick on his birthday and missed his birthday party that I could have another birthday party and in the mind of a 2-year-old that would serve as a fine replacement. So I threw a completely allergy free Thomas Birthday Party and it made my baby happy and made me happy to see! It was a little party at home with some family and he broke out in hives from who knows what but he smiled from ear to ear and loved his Thomas cake! I chose for his party to be our little glow right now. Something positive and happy and I let the boys help with the cooking and cake and frosting making and they loved it.  Happy (belated) Birthday Baby!  Hope your memories of your real birthday fade and this party will be what you remember! I love you so much!  I give anything to see your smiling face everyday!! Your smiles truly light up the dark…