A little over a month ago, just prior to Christmas break, I went out to the Bloodmobile parked in our school parking lot to give blood. They are usually thrilled to pieces to have O- walk in the door, but this time they turned me away. After passing my iron test, I flunked my blood pressure big time. 160/120. I, quite naturally, had a pounding headache (that I’d had for 3 days) and my heart was racing. This isn’t normal for me, so I chalked it up to stress, but made a mental note to call my doctor.
Later that day, I had yet another person make a comment about me needing to buy some more clothes from “all that weight” I was losing. I kept telling people that I wasn’t on a diet, and may have lost just a few pounds due to being so busy.
During Christmas break, my back went out and just didn’t seem to be able to get it back to normal. Right about that time, I also began to have intermittent pain in my right side. And then two days before returning from Christmas break I came down with what I thought was just another case of bronchitis. I returned to school on a Tuesday, stayed two hours, and went home to crawl in bed.
The next day, I had a scheduled doctor’s appointment (that I had made following that blood pressure incident). Imagine my surprise when the nurse weighed me and told me I had lost 29 pounds in just a few months. And I hadn’t been on a diet. The doctor walks in and starts asking about the weight loss, the blood pressure, the abdominal pain, etc. And then he discovered that I was tachycardic, with a heart rate of 122. After taking in this assortment of symptoms, listening to my lungs, doing an EKG, and hearing me confess to being terrified of pancreatic cancer (following the death of my stepmother), he ordered up a mess of tests. At 38, cancer isn’t the first thing a doctor worries about in a patient, but, with my symptoms, he spent a lot of time with me and patiently detailed a long list of possible concerns. Among them were lupus, adrenal tumor, cancer, thyroid problems, and plain old-fashioned stress. Having watched someone I love die of pancreatic cancer, that possible diagnosis is a real terror for me. This somewhat irrational phobia combined with the doctor being clearly concerned about me, I must have had the deer in the headlights look about me. He offered me a few days of Xanax to keep calm until the tests returned. Not being one to normally like pain killers or sedatives, it’s a statement to say I readily accepted them.
I thought I was being relatively calm until I approached the front desk. That’s when the nurse informed me that the doctor was referring me to *Dr. Smith. At that point, I heard no more and reason flew out the window. *Dr. Smith had been my stepmother’s oncologist prior to her death. I walked out to the car where my husband and kids were waiting, petrified my children might not remember their mother. I called my best friend, a physician in Vermont, who proceeded to tell me to calm the heck down and assured me over and over again that it doesn’t work that way. “We diagnose cancer first. We don’t send patients to oncologists out of suspicion. You heard wrong. Call back.” The next morning, after receiving a call from *Dr. Smith’s office setting up an appointment and panicking all over again, we called my doctor — only to discover that there are TWO *Dr. Smiths in our small town and that I would be going to see the gastrointerologist, not the oncologist. Feeling stupid and enormously relieved, I went to do my blood tests and get my chest x-ray.
I had calmed down again and was lying in bed the next morning when the nurse calls and informs me that my chest x-ray looked a little funny and that the radiologist was concerned that he might have seen a blood clot in my lung. I know what a pulmonary embolism is — and it ain’t good. She then tells me to leave the house immediately and go to the imaging center for a CT scan of my lungs. Well, 2 1/2 hours later, my veins won’t stop collapsing and they can’t get a scan. So I go home to wait on some other test that can also inform the doctor of a blood clot. He called me all weekend (a most wonderful doctor). When my chest began to get worse a couple of days later, they sent me to the hospital for a second attempt at a CT scan. It revealed no blood clot, but a hidden case of pneumonia. By this point, my other tests had come back. Everything but a test possibly indicating lupus came back with good results. My six days of abject terror were over. I still have to see a rheumatology team and return to the gastrointerologist for possible kidney and liver ultrasounds, but cancer is not their worry at this time.
It was the most terrifying experience of my life. A few years ago, worrying about being so ill would have terrified me for other reasons. I would have worried about the countries on my bucket list I haven’t visited, that I might never publish my novel (that has yet to be written), that my soul might not be right with my Maker, etc. But the only thing I obsessed over during those days was my children. Being 4 and 2, the odds of them remembering much about me had I died were slim. I worried about my daughter not having a mother’s influence. And I was terrified that I wouldn’t be here to advocate for my autistic son. It killed me to think I might have to leave him behind, never knowing how much progress he might make. I could hardly look at them without tearing up. For the first time in my life, I understood what real fear was all about.
I’ve learned some important lessons over the past few weeks. They are:
1. Life is way more fragile than we think it is when everything is going well.
2. It’s so easy to get caught up in worrying and complaining about what you don’t have. It takes only thinking about what awful things you could have on your hands to give you some perspective.
3. Stress really does kill. When you allow yourself to get run down and overwhelmed and suffer chronic sleep loss, your body will take note and force you to pay attention.
4. It is important to learn how to say “no”. If you keep saying yes to everything people ask of you, it will catch up to you.
5. Things are rarely as bad as you think they are in the witching hours of worry in the middle of the night. Calm down and breathe.
I realize that I didn’t dodge any literal bullets, but I sure feel like I did. It was scary enough to me at the time that I plan to make some positive changes in my life and health. And one of them is the realization that the only thing that is really worth worrying about is my children. Yearbooks, book fairs, projects, web sites, and autism cannot be given the power to make me sick. If I give them that power, I risk depriving my children of me. So, it’s time to suck it up and think about my world and my worries just a little differently.
So, though I still have pneumonia and feel like I’ve been run over by a bus, I am unbelievably grateful for my blessings. I wasn’t going to make a New Year’s Resolution, but found I ended up with some after all. Namely to worry less, take better care of myself, and focus on gratitude. Feeling thankful today for wake up calls – the kind that turn out to be nothing, but mean everything.
Looking forward to posting reviews in the next couple of days of two books I want to share with you. What I Wish I’d Known About Raising a Child With Autism by Bobbi Sheahan and Kathy DeOrnellas, PH.D. and In His Shoes: A Short Journey Through Autism by Joanna L. Keating-Valasco. Stay tuned.
I knew it was coming. So, it isn’t a surprise. Funny how that doesn’t make it any easier. Having seen relatives raise autistic children, I knew the time was coming when taking our son out in public would become officially difficult. Up until now, I have been able to avoid the stares of others during my son’s tantrums. He was still a baby. Until recently, most people (including those who knew him fairly well) didn’t think he was so different than other toddlers. Many of them were still making the He’ll Catch Up, So Quit Worrying argument. But, as he is getting closer to three, it is becoming more obvious that he doesn’t talk, doesn’t play normally, and emits ear-piercing shrieks when life isn’t going his way.
I got my first Stares From People in Public Who Clearly Raised Their (Normal) Children Better Than Me the other day. We went for our weekly trip to Publix and, for the first time, the cookie that the nice folks in the bakery gave Callum didn’t keep him happy. He began to shriek. And shriek. And, just when we thought it was over, shriek some more. And they all looked up and stared. That stare that speaks volumes and says, “I’d tear his little butt up and shame on you as a mother for not having done it already.” I looked around, and then I knew. The days of blending in are over. We are about to become the family that is a pain to have around.
A couple of days later, my best friend Beverly arrived from Vermont. We hadn’t seen each other’s kids in over two years. We took them to a park. And Callum wasn’t happy. We took them to Wendy’s to lunch. And Callum threw everything within reach off the table. And shrieked for a chicken nuggett – pretty much the only thing left that he will eat. Yep, those days are here.
I’m not ashamed. But I’m sad. I’m sad that he doesn’t know the joys of playing with others. I’m sad that my four year was so desperately happy to have a playmate who actually played with her. I’m sad that I couldn’t sit down for a few minutes and enjoy my friend without following Callum around, who is always busy AWAY from where all the other children are grouped.
But then he found the hammock. I put him in it, and he just melted with satisfaction. And I got some cool pictures – the rare kind that you can’t ever seem to get with a child with autism. Ones with genuine smiles that highlight the little souls we love so, so much. So, for Thanksgiving, I am thankful for hammocks. Hammocks under canopy trees in perfect, breezy weather. And cameras available in The Right Moment.