It’s been too long. I’ve missed you. I’m sorry I haven’t posted in a while. This is a long one, so I hope you can read it while enjoying a nice cup of something delicious, while putting your feet up on a cushy couch.
We had a rough fall with Max sick for most of it. A few weeks ago, I brought Max for testing at an asthma/allergist’s office. He had been coughing non stop and I almost didn’t bring him in thinking that he’s too sick, it’s yet another virus. But my instincts told me to get him to the city anyway, coughing or not. I figured, let the doctor hear this awful cough, examine him and help us figure out what’s wrong!
PS, long story getting longer, the doctor examined him, and said, “No way can we test for any allergies today. He’s wheezing. This is asthma. But we can treat him right away and we can get this under control.” Before I knew what was going on, Max was given a Prednisone pill. Then I had to hold a nebulizer mask over his face.
In a matter of minutes, the terrible coughing stopped. The doctor gave us prescriptions for various inhalers and a course of liquid Prednisone to take for 5 days. Well, between Max’s symptoms that day, the family history (there is asthma on both sides of our family), and the review of his illness history, all led to a diagnosis. Finally! If you’re going to have an asthma attack, having one at the asthma-allergist specialist’s office is pretty good timing. Another moment where I was glad I had followed my gut and persisted in finding out what was wrong with Max’s health. And yes, he did have a virus, as well.
Max’s asthma is not the severe kind, and the doctor said we will get him out of the “crisis” then maintain and prevent his asthma from getting worse. He’s considered mild to moderate now, although at the time of this visit, Max was in moderate status. And who knew coughing is an asthma symptom? So, now we know what we’re dealing with and why and so on. I might write more about it when I get a better handle on the info, but meanwhile, after a few days on all his new meds and inhalers, Max started improving. He got better each day. The hardest part of that first week was him being on Prednisone, which made him irritable, aggressive, and caused him to lose his appetite. But once that was out of his system, he improved dramatically.
Max has been to school two whole weeks in a row, and almost every day, we’ve arrived on time! His sleep routine is better, as is the quality of his sleep. Most mornings, he wakes up raring to go. His appetite is improving (although he’s suddenly refusing ALL vegetables) and he’s got better energy during the day. In general, he’s happier and healthier! It feels like a miracle. Even though there is no cure for asthma, there is treatment and he might even outgrow it. In the meantime, we can make his life (and ours) so much better. I’m grateful for the medicine that is helping him, and especially thankful to the doctor who has finally unlocked the mystery of his poor health.
So, I have been very preoccupied with this health stuff; first, with him being sick all the time all fall, missing school over 50 days, and me being a full-time nursemaid/mommy. And now, with this new diagnosis, I’ve been working on getting back good bedtime, daily routines, structure, just regular daily life stuff.
In light of that, and my depleted energy and having given and done and put off and postponed pretty much anything that wasn’t related to Max or his health, I have found myself quite drained and exhausted. The first few days he went back to school, I was stunned. My body ached. I couldn’t think clearly. Then I panicked and got overwhelmed. Oh, the list of things to do was too long. It felt unmanageable. I had a good cry, and let it all out. The fact that he has asthma, and had been sick for so long before we knew what this was. The frustration of lost time and money. The mounting piles of laundry, stuff to put away, toys in every room from his weeks in sick bay. Silly things, some of this, but still, no order, no structure, just sickness and no relief wears a person out.
I knew I was doing everything I could, but I also felt very small. Lost, even. Where was I in all this? While going through it, I just did what had to be done and didn’t dwell or think about myself. During the AFTER part, I suddenly felt all this pressure to learn everything I could about asthma. Because that’s what I do. Something happens, I need to research it, understand it, and then share it with others, just in case it can help someone else. I went overboard until I understood how stressed I was. I needed to STOP. Stop all the doing. I realized that I really needed to REST. It was time to put my own imaginary oxygen mask on and recharge myself. I’m listening to music again and enjoying things like reading.
I’m taking a break to rest every day, along with catching up on many piles of stuff I had to let slide for a while. In the past few days, I’ve noticed my energy slowly coming back. I’m able to focus again. I even experienced flow for the first time in a long while (while painting) and it felt great to be creative again. I get cranky when I don’t write or paint. I definitely lost my sense of humor at some point. For me, the “I used to be a professional comedian” person losing my sense of humor was NOT a good thing. I lost perspective. Then I realized, I really do need to be productive and do things beyond being a parent. Not instead, but in addition. I need to create. I’m still a parent AND I’m an individual. What a concept! The absence of time, work, and outlets for my creativity made me sad and angry. I wasn’t liking how I was feeling, or how I was experiencing the world. I’m usually able to find beautiful things and positives wherever I go, in almost any circumstance, but I was losing that ability because my son was sick and I was taking care of him as best I could, which didn’t seem to be enough, and I was afraid, and worried, and that consumed me.
One thing that helped me was a new friend and a wonderful artist, Jaime Rugh. Her beautiful posts lifted my spirits. When I failed to find beauty in my life for a stretch of time, her posts came my way and helped me begin to see again what I usually could see, but couldn’t for a spell. It made me realize (again) we all have our ups and downs. Sometimes I’m the one helping others, sometimes I need others to help me. I’m grateful for her work and beautiful giving spirit.
Everything this fall was about sickness and things related to that and not much else. And all along, believe me, I was glad what we’ve been dealing with is treatable. There are very sick children out there without any hope for treatment. When I think of them and their parents, particularly Emily Rapp, an outstanding and remarkable writer who writes about her life with her terminally ill son, Ronan who has Tay Sachs—I absolutely get another layer of perspective. Her work is often breathtaking, always insightful, beautiful, honest, and gut wrenching. Her story breaks my heart, and her ability to write so thoughtfully and exquisitely while going through enormous and ongoing grief, inspires me. She reminds me how powerful a writer’s need to write is, how it can save, how necessary it is.
Before we knew what this was or that asthma is immensely treatable, my what if worse case scenario brain went into overdrive of worry. I’m relieved we’re out of the UNKNOWN —what is wrong with my Max? and are now into a place of learning and managing. Not that anyone wants to hear that their child has asthma, it’s no joke. But still. It is treatable!
And sometimes stuff sucks and illness is not a good thing, whatever silver living you may find when dealing with it. Our family has it’s share of illnesses: mental illness, neurological illness like Parkinson’s and Multiple Sclerosis— it goes on and on. Most people seem to brush off talking about illness, as if talking about it will make it contagious somehow. People don’t like to be uncomfortable or think that any such horrors could befall them. One cannot compare Asthma to Tay Sachs and that is not my intention here. Yet, adults and children do die of asthma attacks. So when I heard the doctor say, “asthma” —I flashed to the worst possible image of Max gasping for air and found myself breathless for a moment. That kind of fear is primal. It takes a minute to recover from that. Then the doctor continued, he explained things, and I calmed down, also so I could be strong for Max, and not alarm him by a hysterical reaction (which I had internally while keeping an outwardly calm appearance).
But it was another mother who was there at the same time with her young son, who saw my face when we walked out of the office, and she reached out to me, and put her hand on my shoulder, and said, “It’s going to be OK. It’s overwhelming at first. Get an air purifier at home. It really helps.” We hugged each other. Complete strangers standing in a hospital hallway with our sick kids. She was the first person to comfort me, and as if we were old friends. That was a silver lining moment. I am grateful to her, and I don’t even know her name, just her kindness. It is not a blessing to have asthma. But it is a blessing to know what it is, and that it is treatable. It is a blessing that a fellow human being saw my face, that I was holding back tears, and she decided to help me.
I get what I get, and I choose how to deal with it (or not), in whatever way makes the most sense. 11 years ago, we bought a new car thinking Andy was going to die, so he might as well get a brand new car (he had never had a brand new car). The car is still working and Andy is very much alive.
That’s kind of how we feel about life. We never know, we have now, and we already know all kinds of crap can happen, as it has and does, losses, deaths, abilities, so we try to live in the moment. But I think it’s also human nature, to look back, or to look forward. It’s hard to not get caught sometimes in the past that is gone, or waiting for a future that hasn’t happened yet, and there’s a tension there. And there is also joy in anticipation, of what will come next. And in reflecting back on happy moments.
Last week, I read this article in Vanity Fair by Christopher Hitchens. I was thrilled to see that he was challenging “what doesn’t kill me makes me stronger.” I thought, yes, yes, I agree! While writing this today, I found out that he has died. I will miss his writing and thinking and unique voice in this crazy world.
While going through this, I also found this piece by Tony Schwartz. It really helped me think of my at-home work with Max (or on my own when writing or painting). While I do love many aspects of the work of parenting, some of it is very difficult, and it’s still important to take breaks, no matter what kind of work you do. It’s often harder to do with a young child, but there’s ideas and practical suggestions in here that can translate to almost any job. The idea being that we ALL need to refill the well. In some way, I guess it gave me permission. Or maybe I was finally ready to give myself permission.
It’s as if I forgot how to do to things for me. Certainly a predicament many parents of young children face, whether they’re dealing with an illness, or not. And I hope to write more about that (and reclaiming parts of my life I have let go of for a while) in the new year. Or maybe it’s more about finding out who I am going forward. As Max gets older, I can shift some focus back to me. What do I want? What do I need? One thing at the top of my list is finding more work and writing more in general. Yes, even in this economy, I’m determined and hopeful.
I’m looking forward to the holiday break. Chanuka starts on 12/20, Andy’s birthday is a few days after that, and I can’t wait for the time off to be together and RELAX and celebrate all the good things we are lucky to have.
I wish you a very HAPPY & HEALTHY HOLIDAY SEASON! In the rushing, stress, schlepping, wrapping presents, family dysfunctions, and whatever else is coming up, I hope you, especially parents of young children, take a break for yourselves to replenish your own well, however way that brings you joy. As always, thank you for reading.
Love, light & peace,
ps. for those feeling bogged down by holiday consumerism, this post from becomingcliche is right on!