I'm taking off from Chicago O'Hare. Below me the landscape stretches out in hues of dull greens, browns and greys. Winter is setting into these parts, and though the sunset in the distance is probably beautiful, it's muted by an evening haze.
Hazy.
Maybe this is the best word for how I've been feeling lately. See, Stow's sick again. And it's a lot like things were a year ago, when he stayed sick for six weeks, started losing weight, and went from being in the 90th percentile to "failure to thrive." What a year ago seemed like an extremely mellow baby because he was so chill and inactive, at eighteen months is truly unsettling. When Stow's sick, he becomes silent and stops moving. Looking back, Stow was probably sick a lot during the first year of his life, and we just didn't know it because he seemed so darn easygoing.
Sweet boy.
This last bout started with a round of C Diff followed by the stomach virus which was accompanied by exacerbated asthma-like symptoms. The C Diff lasted for three weeks and requires treatment even now, and the stomach flu that hit most people for 24-48 hours hung onto Stow for 7 long days of diaper blowouts and refusal to eat. Today, finally, he woke up seeming like his old self, but he's lost some of his words. He no longer says "Daddy" or "Sky" or "Pink." Just "Mommy."
Over and over.
Mommy. Mommy. Mommy.
And I know he's pleading with me to make this better. To figure out what is going on. To advocate for him. And he's begging me not to go. It seems I'm always going. To work. To therapy for Sky. To call the doctor, the insurance company, the school.
I don't know what's going on. I really don't. But I'm starting to get glimpses of it, and it unnerves me. And it makes me angry. It angers me to know that Stow might be the most heavily affected by the same confluence of forces that brought Sky to autism and Pink P to asthma and allergies. With Sky and Pink, I had no idea. But, with Stow, I did. And, still, I couldn't stop it. One day soon I will get beyond the disbelief. The guilt. And the anger. And I will start to fight. And when I do, there will be no stopping me. But today, today, I am gathering my strength and trying to figure out which of these battles I need to fight first...
Suspended thousands of feet in the air, I look out into the darkness that has enveloped the earth below. The night is clear and tiny lights dot the landscape. I know tomorrow the sun will rise, and we will go on. We will laugh, we will cry, we will love, and we will keep moving. And somehow, we will be okay, because despite everything, we always figure out how to go on.
3 comments:
Oh, I remember my little girl who was so easy. Asthma. Even when she was having trouble breathing, she was so sweet. Such a difference compared to her brother!
I know that feeling. The deep breath before the next battle. People say, "You're such a good mom. I don't know how you do it." And I know I'm nothing special. When it's your child there's no such thing as giving up. You try and try until something works....and then you fight the next round.
After having pushed and pushed my youngest is now diagnosed with PDD-nos as well. I recognize the feeling of "haze" so well. And sometimes still at a loss were to focus my attention to, again.
Every time you think everything is out in the open and all persons involved are facing the right direction something comes up that shows it is not. My eldest changed medication in June. Since start of the new school year no comments from school. No invitation for a talk nothing but silence... That should've warned me but it didn't. Last week it turned out his final school level was lower then the pre advise as given in July. Why, because he was not functioning properly at school. AT ALL. I'm baffled yet again we have to go trough explaining about ASD. And now after 6 years of knowing that Gerben has PDD-NOS, that this explaining will remain so for the rest of his live. And I am in a haze how to tackle that long unknown future... And yet reading your story gives me comfort and the knowledge that all those fight will be won.
Sandra Timmerman nl
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