During the Asthma Girl’s early childhood, I didn’t wish for a whole lot. Nothing material, really.
A week’s worth of sleep.
A guarantee that my kid wouldn’t stop breathing in the middle of the night.
My sanity.
I haven’t written much on this blog about those years because they’re not easy to think about. In 1999, I gave birth to the AG one day after my 23rd birthday, 9 months after graduating from college and approximately 7 years earlier than I planned to start having children. My writing/editing career and paying off my student loans would come first, and the stable family would come next.
Instead, everything about AG was a surprise. Her conception, her arrival in the world almost 6 weeks too early, and her first cold at 10 months-old that morphed into a New Year’s ER visit for pulse-ox monitoring, nebulizer treatments, and prescriptions for prednisone and oral albuterol. The final clincher? Her asthma diagnosis at age 2. We have no family history of asthma on either side. She has no risk factors except for her premature birth.
Wait. There’s more.
My daughter’s asthma actually seemed mild at first, and only in the cold light of her surprisingly good health in elementary school did I start looking back and understanding it was bad from the very beginning. At the time, the AG seemed to flare worse and more frequently as she got older, culminating in a year–her fourth year–of nonstop breathing problems, ER visits, and hospital stays. Now it’s easy to see how our inexperience colored our view. She never *got worse.* Rather, she has always had persistent asthma on the moderate to severe scale and was just *lucky* her parents’ ignorance didn’t get her hospitalized sooner.
It’s hard to understand now, but I never researched asthma in the beginning. I can place the blame partly on her doctor. We later left for another, better practice but the pediatrician who diagnosed the AG did not seem concerned about her breathing problems, didn’t even bring up the words *maintenance plan* and didn’t recommend further reading. But part of the blame is mine, too, for denial and avoidance and pretending/hoping/wishing that my daughter wasn’t sick, my kid didn’t have a major health problem, my life wouldn’t stray any further from the route I had mapped out before the unplanned pregnancy made me take an unexpected sharp turn.
People compliment me sometimes on writing about asthma, about maintaining what is essentially a part-time unpaid writing gig in order to educate other parents.
Here’s the problem with that view. The good thing I’m doing now does not yet negate the very bad things I did then.
I did not educate myself about asthma.
I did stay in denial for a long time, calling my daughter’s asthma *mild* simply because I wanted it to be and despite the contrary evidence.
I did stay misinformed about the difference between anabolic and inhaled corticosteroids, and therefore
I did only use the steroids as needed for AG, even though she had moderate to severe persistent asthma.
I did not want to have the sick kid, so I convinced myself she wasn’t.
I did not understand, not until she ended up in the hospital on oxygen for a week at age 4, that she will likely deal with this disease for the rest of her life.
It is a hard, hard thing to see a child that young in her Halloween costume, dragging around an oxygen tank and trick-or-treating at the pediatric nurse’s station.
It’s an even harder thing to know it was probably my fault.
That’s why I gave up my career for several years and even homeschooled the AG for kindergarten. That’s why I write this blog. That’s why I write for BellaOnline, and that’s why I wrote a memoir that I might even someday finish editing. Despite having an English degree, I can find no other words for this than the trite ones–if other parents of Asthma Boys or Girls avoid my mistakes and get the asthma under control at an early age, then all this is worth my time.
Because it’s not fair. Growing up with a chronic health issue is just not fair and there’s no way to understand why some children have to. It’s the worst kind of luck. It means a childhood marked by meds and procedures I’ve never encountered in almost 32 years of life, and that’s just for asthma. So many other children and their families are facing even worse, and that’s an unimaginable situation to me.
You see, when my kid struggled to breathe more or less all the time, life was so abnormal that I couldn’t think beyond the basics. I just wanted to put her to bed at night and know that her lungs would allow her to stay asleep. With my other daughter under age 3 during those hard years, I wanted the asthma to calm down enough that I could give both my children the attention they needed. If the AG could just breathe, if we could all just sleep, if we could just have a normal, active life like normal, active families then I wouldn’t care about anything else.
I was wrong, of course, because I am human and we humans have it in our natures never to be satisfied, don’t we? Now that I have all that above–the breathing (usually), the sleeping, the *normal* family–there are plenty of other things I care about and plenty of things I still want. While I sometimes wish my daughter’s comparatively good health and controlled asthma were enough to make me happy, I also mull over how it’s perfectly okay to wish she didn’t have the disease at all. Or that I’d see a cure or a vaccine in my lifetime. No one ever accomplished much by staying content, and even if I can’t come up with a cure myself there’s so very much I hope to accomplish.
In any case, I have a pretty long Christmas Wish List this year, even excluding the financially unfeasible items from my real-life list (new laptop) or the (currently) scientifically impossible ones from my year-round one (asthma cure):
What I Want for Christmas
1. For the AG to keep doing okay on one dose of Flovent/day rather than two.
2. For someone in the legal profession to figure out a way around patent law so we can get affordable generic versions of the HFA inhalers.
3. For pediatric asthma rates and asthma death rates to decline.
4. For Asthma Parents not to be the way I was 5 to 7 years ago.
5. For Asthma Boys and Girls to have access to all the meds they need, despite their families’ income level or health insurance status.
6. For this blog to keep growing.
7. For my attempts to regain my asthma-derailed full-time career to come to fruition.
What’s on your Asthma Wish List?
Amy, What a wonderful post! But, you know you’re way to hard on yourself. Unless you’re a Pulmonologist or an asthmatic yourself, it’s really difficult to identify severe lung disease in a child so young. I don’t think anything you could have done would have made AG’s asthma less severe. Certainly, there is no permanent damage.
I admire the fact that you are taking the time to educate yourself and others. .
Your wish list is right on .
I’ve just started dealing with #2. My co-pay for 2 inhalers per month, shot from $10 to $25
I wish you the best for #6 !
Amy,
I think you’re way too hard on yourself. As someone that dealt with an unexpected onset at 44, I thought and felt exactly the same things.
1. it’s not that bad
2. the fewer meds the better
3. this too shall pass
4. avoid steroids at all costs.
Guess what? 5 years later we all arrive at the same place after enough hospital and enough scolding from doctors and enough research and enough evidence to the contrary we began to face the truth and make better decisions.
I don’t think anyone should bash themselves for difficulty dealing with asthma. And I think the learning curve is really 2-4 years to get truly comfortable with what’s happening and how you’re dealing with it. I say that for two reasons:
1. Everyone’s asthma is different and it takes a while to see patterns and responses.
2. I don’t have a daughter with asthma, but I do have one with a developmental disability and frankly there’s some similarities in learning what a parent needs to learn to advocate for someone with special needs, whether developmental or health impaired.
How I can say this and then vent like the dickens on my own blog I don’t know but….
You don’t need to balance anything (in my opinion) to make up for your wish for it to all go away before. What you’re doing now is incredibly valuable in and of itself and not some payback for being human and wanting AG to be well.
Thank you so much for your insightful posts, inspiration and dedicated research.
My list:
Managable asthma for the next 6 months
cheaper asthma meds world wide
#7 for you!
Steve, this is exactly why I talk about sitting this blog up instead of trying to afford therapy, LOL. Thanks.
On a financial note, my co-pay changes match yours exactly–considering the monthly meds my kid’s maintenance plan takes (and yours too, I’m sure), the difference takes a big chunk out of my checking account. Haaaate brand-name prescriptions.
(Other) Asthmagirl,
But where would motherhood be without the guilt? OH THE GUILT. Thank you thank you thank you as well.
What drives me nuts, though, is how just so many of us have that same learning curve. Why? I really feel like enough is not being done to hammer home the lesson that most asthma can be really liveable but you’ve got to probably accustom yourself to the idea that A) It’s incurable and B) Sometimes requires lifelong meds. But THAT’s a post for another day, lol.
Anyway, you hit on something else that’s so very weird/difficult about the whole thing–getting used to the idea of daily meds is SO counter-intuitive with children. (and obviously, for yourself too, although I have no personal experience)
And yeah, having perspective on others’ lives but not my own is my specialty, too. (that’s what blogs are for, right?)
I hope we ALL get the items on our lists.
I found my way here via asthmagirl and a comment she left on another blog.
My 15 yos has asthma. We also have no family history. It has been a long tough road for him and even with the age that he is, when he gets sick, my husband and I take turns sleeping near him so that we can be there if he has trouble breathing.
Nearly 3 years ago we spent a good bit of time at National Jewish Research Hospital in Denver. They took him off all meds and put him through every test imaginable. We now have his asthma under control for the most part. He takes Advair 250/50, Singulair, Astelin and pre-treats with Xoponex and Intal prior to sports. He also still uses Albuterol for rescues and when he is sick. We’ve been able to keep him off of prednisone for almost two years.
One of the most heartbreaking things that has happened was last year when he was recruited to play on a special basketball team. He is very athletic and has played soccer, football, and baseball. He had never played basketball but has a hoop in our driveway and had played a lot on his own. He tried out for the 8th grade team and didn’t make it but the coach invited him to practice with the team because he felt he had a lot of potential. He did and they made him the team statistician so that he got to accompany the team to away games and at the end of the season they allowed him to dress for the last tournament. He made over ten points in less than 5 minutes. We got a call from a coach asking to put him on a special team that they were putting together for a city team to work on the kids off season (sports are cut throat here). He was already signed up for baseball and we let him make the choice. He chose to skip baseball and participate on this special team. Basketball is a lot of running and our son usually has trouble at the beginning of each sport until he figures out the timing of the pre-treat. At his second practice he had a major asthma attack and freaked the coaches out so bad that they were afraid to play him. We stayed at practice with him to give the coaches piece of mind but… they just couldn’t handle it. He was benched most of that season and if we were not at practice, they didn’t even let him practice. This absolutely broke our son’s heart. And ours.
We found out shortly after moving into our house 5 years ago, that the people that had lived in the house next door to us had lost their son to asthma at 18 years old. He, like our son, was an athlete. He was alone when it happened.
I’ll be adding you to the list of blogs I check!
What a great post Amy. Thank you.
I first found you through the BellaOnline Asthma forum after my allergist told me to be on the lookout for asthma, as my 3.5 year old son has food allergies. (which is another one of those most-likely-life-long scary things to get used to. I do wish we didn’t have food allergies).
After asking about this on the forum I got back the impression that YES I needed to watch for early signs of asthma, and to NOT dely in dealing with them. Thus when my son had an odd, croupy sound to his breathing a month or so ago, I had him in to the allergist the next day. (she works in the allergy/asthma clinic there & has qualifications in immunology & allergy). That was our first round of flovent.
Since then we’ve had eczema (atopic dermititis) – another one of those things strongly associated with food allergy.
I have to say I am really really hoping we don’t head down the asthma route. (we have plenty on our plates with the allergies, thanks!!!) But if we do, the following is true and it is all because of YOU – sharing knowledge & mediating the Bella board:
1) any possibility of asthma is being watched for and addressed as soon as possible
2) I know we can get through this, even when it is really scary.
3) It is better to be on the maintenance schedule if you need it.
4) You CAN live a good life despite asthma. Some people’s symptoms diminish greatly later on (and some don’t) – it doesn’t mean you don’t have asthma anymore but it is possible to live with it.
5) There are things I can control in our environment to make things better.
6) There are knowledgeable people I can ask about tests, results, medications etc.
and that’s just a list off the top of my head. so, a great big THANK YOU from over here.
There is a seed of fear in my heart always now – I mean, beside the one that is there due to the food allergy, epi pen, etc. Now when I hear some sneezing or occasional coughing, or see dark circles under my son’s eyes, there’s a bit inside that turns to ice. Is this it? Will we need the inhaler again? I *know* this isn’t the end of the world, but it would mean life as we know it will change. The world will be a scarier place.
As for my list, well here are the selfish things I’d like:
1) For my son to not have asthma (we still don’t know if he does or doesn’t – our episode wasn’t your classic case and he’s too young to do the spirometry test)
2) For my son to outgrow his egg allergy (quite likely), tree nut allergy (not likely) and fish allergy (??? no data).
3) For great leaps and bounds in the science of how to treat food allergy & asthma. Cure would be best, but something to relieve the life-threatening and quality-of-life-impairing effects woudl also help.
4) For my hubby to find a job (his last day of work is Feb 1) – it’s just another stressor for the family right now.
Oh, and peace, love and good will to all of course
I hope you don’t mind such a long post. Thank you again for all you do.
Andie
Kelly,
I am just the same. When the AG has a rough time, even when she’s not coughing at night sometimes I can’t sleep unless she’s right next to me and I can SEE and hear her chest moving regularly.
We haven’t had to pre-treat yet, but she just started team sports (basketball also). I know it could be in her future. Those coaches of your son’s though. *shakes head* I understand how scary asthma can be to people who don’t deal with it regularly–I mean, it still scares ME sometimes after almost 7years–but you’d think they would be okay with you guys there. Your poor kid.
And those poor parents next door–that is my nightmare. All of ours, I’m sure.
Anyway, thanks for your kind words and for stopping by! Please do come back.
Andie,
I DO remember you and especially those food allergies. A friend and I were talking the other day about how allergic asthma seems easier to treat than intrinsic asthma (what my daughter has) but ONLY if environmental allergies, not food ones are involved. That’s our impression, anyway, although some research seems to back it up.
I don’t envy those food allergy issues at all, but I’m so completely impressed by your getting ahead of the game now, before you hit the major (possibly, though I hope it never happens) problems. THAT is what I didn’t do in the beginning–and for awhile–and why I’ve got such the major case of guilt. Your son is lucky to have such an informed mama.
And btw, my stomach can STILL clench up at every little cough, even now. Somehow the worry never ends (and they’re not even teenagers yet).
I SO hope your son outgrows as many of those food allergies as possible and your husband finds a good job. What a crappy thing to worry about over the holidays.
And to ALL my online friends, old and new, THANK YOU again. Really. The help I got from asthma moms back in the beginning made an enormous difference in my life, and my kid’s. While I try to pass that help along, the whole time I’m getting–still–heaps of help and support from all of you, too. Chronic health problems can break your heart, can’t they? Yet they can pull out such great reserves of strength and compassion in people, too. I am continuously in awe of all the asthma parents and asthma patients I meet and so happy all of you choose to come here.