This week I spiraled.
Not quite a full tailspin, but just enough to knock me off course.
We watch our sweet L get sick often. We go to the pediatrician often. We consult with specialists often. This is our normal.
This week I had enough.
This week, I was angry.
This isn’t the normal I wanted. This isn’t the normal I expected. This isn’t the normal our 3 Os-lings deserve.
Sometimes, being told that we need frequent flier points at the pediatrician is enough comic relief to make me smile, to lighten the load of another appointment. But this week, it was almost enough to break me.
Sometimes, being told by medical professionals that our boy is a mystery to them can be taken as a compliment when I seem to understand him so well. But this week, it was daunting.
It seems we can’t go a week without a food reaction, fever, illness, infection or random GI upset. Since September he has faced over 20 fevers, most without known causes. Plus a slew of airway issues including pneumonia, bronchiolitis, and recurrent croup. He’s had a handful of double ear infections. He’s had food fails that lead to weeks of diarrhea and blood in his stool. He’s been diagnosed with reactive airway disorder since he is too young for an asthma diagnosis. He’s had medical testing and countless blood draws. He’s had hospital trips, multiple rounds of antibiotics, steroids and nebulizer treatments. For the rare week when I am not making the trip to the pediatrician, he seems to make up for it with double appointments the following week. Although I am always relieved when a test comes back normal, when another issue is ruled out, I can never quite take a deep breath. I can never quite shake the feeling that some crucial piece of the puzzle is being missed and there is something more we can do. It just can’t be normal for one little boy to be sick this much; to have so many systems in his tiny body work against him. Can it?
This past week I struggled. I struggled to face the fact that our lives aren’t always what we pictured for ourselves. That we have added complications that those around us may not understand. I struggled to explain our boy’s medical needs, repeatedly. I struggled with comments made even if they were with the best intentions. I try to be grateful for others who don’t “get it”, this just means they haven’t had to live it. I try to be grateful for the opportunity to educate others, but it is exhausting to rehash it all like a broken record. This week though, despite the smile painted on my face, I was bitter.
I was not okay.
I struggled to see the silver linings. I struggled to see the blessings. All I seemed to notice was how unfair this hand we’ve been dealt can seem.
I know in my head that as time passes, he should improve. All of the doctors have told us this and the research is there to back it up. In my heart, I dream of the day when these concerns are behind us but dread his growing up at the same time.
So this week I chose to take action. I choose to reach out to all of his medical professionals and see what else we can do. I choose to revel in little L’s sweet smile and big brown eyes. I choose to soak in his sense of humor and vibrant personality.
I choose joy.
In those moments when I feel robbed for losing these precious fleeting moments to anxiety and illnesses, I will choose to be grateful that we have him to hold and love. That we are lucky enough to have this precious boy as our son.
In those moments when I want to scream into my pillow and crawl into bed in defeat, I will choose to pick myself up, put on some music and have a dance party with our 3 crazy Os-lings.
In those moments when I feel the pull of Google and the allure of a research spiral, we will head outside to play away from screens.
Finding the silver lining is hard. It doesn’t come naturally. When you are forced to be the medical advocate for your child, you start to only see the medical issues. This week I am choosing to see beyond that. I am choosing to take our lives, our summer, our fleeting precious time back.
Our little L is so much more than his complex diagnoses and it’s time that our life is too.
