I have met the dementor and I know his name.
It is
Asthma.
His friends are known as Fear, Panic and Anxiety. Too bad this is not Hogwarts, there is no Patronus charm and all the chocolate in the world will not make it go away.
We are dealing with asthma at my house. Both of my boys were diagnosed with
"exercise induced asthma" in early March. My oldest seems to be dealing with it quite well. My younger however...not so much.
When the asthma journey began with the "exercise induced" label, I thought, "Okay. Not great, but we can deal with this. We can work around it."
It seems everyone has heard of Olympic athletes with asthma. In fact somewhere between 10-20% of Olympic athletes apparently have asthma. Well who doesn't want to be compared to an Olympic athlete?? We could DO this.
As I said, my oldest set off,
Albuterol in hand and his breathing during dancing improved. But the youngest...well, it seemed to work for a short time. And then the coughing and the poor coloring returned; sometimes while dancing, sometimes just randomly.
He's been through allergy testing, pulmonary function testing, doctors' visits and even an emergency room visit. At one point he had ten medications going into his small body. I've held him as he's struggled to breathe. He's cried (which seems to exacerbate the situation, but he can't stop) because his chest hurts so badly.
We've been up at all hours, missed anticipated events, struggled with bedtime, struggled with leaving the house, going back to ballet, and worst of all for me--struggled with attending church.
The learning curve for this mommy has been steep. Everyone thinks they know something about asthma--many think it is just about allergies. And sometimes for some people it is. I've had a health care professional (who we know personally) insist it is all "in his head." Really???? That was meant to be helpful?
What I have learned is that asthma is a disease. It may appear to "go away" for awhile, but it is always there lurking. Symptoms are treated, not cured, although there are some things that appear to help improve breathing and stretch out the time between episodes. Some parents have told me that at a certain age their child "outgrew" it. Although I have a friend in his 60s who never did.
Each parent I've talked to (and it's amazing how many are there that I've known for a long time but never knew their child dealt with asthma), read their blogs, or heard anecdotal stories from a "friend of a friend"--each story is different. Triggers are different, flares last different amounts of time, medications are different, intensity is different, timing is different. I'm sure there are a lot of people with similar stories, I just keep running into people with different stories.
We are piecing things together slowly for Boo. What is going to work for him. What is going to get him back to "normal." Whatever normal is. He's been very frustrated because he's been unable to participate in some things that he really wants to because of his asthma. He is working toward "ownership" of his condition and knowledge that will make him more independent.
I am trying to balance my "hovering" personality (I've often been accused of being overprotective) and being too
laissez-faire with him. EVERYONE has an opinion of how I should be parenting Boo and what health care choices I should be making for him. So far, only a handful of people are okay with my choices. My doctors seem to be okay with them, so I will go with that.
As we sat together during a particularly bad time, nebulizer going, me holding on to him, wishing it was me and not him, the Harry Potter-dementor image came to me--hence the title. If you are a Harry fan and know about the dementors
this video will mean something to you. Sorry I can't put in in the post, maybe it's better I couldn't--it's intense and if you don't allow Harry Potter, please don't watch. As I watched it today, it chilled me.
Sometimes it does seem there won't ever be joy again. But better than charms and chocolate, we have a Savior, who has felt every one of our pains before we did. He will get Boo through this, me through this, our family will come out on the other side. While it would be nice to have a quick fix, my faith tells me God knows best and He will not abandon us.
There have been some awful times in this little family's history. I've cried out to God many times, "Why?!" Often it is not until years later; five, ten, twenty years later that I can see a reason. So we stand in faith until that time.
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
Trying to count it all joy,
Julie
