Kind of a crazy concept actually.
Today I realized I have allowed asthma to consume me to the point of having bitterness and severe anger in my heart regarding this horrible disease.
I rarely feel heard on the toll it has taken on my life. I have watched my daughter, the person I gave birth to, the person I would lay down my life for, suffer at the hands of this chronic illness.
It is a chronic illness. Very few seem to get that. If she had cancer, diabetes, or some other juvenile disease people would stand up and take notice. But asthma...it's no big deal.
I have carried this burden alone. Others have helped shoulder it at times, but the bulk of it, it has been carried by me. I am the one who has been there every time she has had difficulty breathing. I have spent nights in hospital rooms watching her pulsometer drop to dangerous levels and her heart-rate monitor skyrocket to where I thought her heart would not be able to take it. I have been left wondering if this might be the time I could lose her.
We have played hours of Sequence, packet Libby her "hospital" dog, and her blanket made by a community of women called the Linus project. All of this to say, we actually have objects in our home that are meant to go to the hospital with us. This is real. It is not something we have made up.
I have argued with emergency room nurses and doctors who take me for a fool because I don't have a degree when in reality, I know more than they do about asthma. I am not blowing smoke when I say that. It is true. I have argued with teachers that she hasn't missed school because she wants to but because she has been struggling moment by moment to get air into her lungs. I have argued that her grades shouldn't suffer because she wasn't there to participate!
I want to be heard at least if people can't understand. Listen to me! Asthma can't be fixed by not eating salt and keeping your limbs warm. Can you imagine walking up to someone with cancer and saying, "Well, Laura, if you just didn't eat salt, you wouldn't have this chronic illness. Just stop!" If there is ever a time for the word bullshit, this is the perfect time to use it. Bullshit! She can't fix herself, and I can't fix her. Asthma can't be fixed. It is what it is.
Do we make excellent choices to keep her healthy? Yes, we do. I hate when people ask if we have an inhaler at home. An inhaler? Really? That just shows how little people have listened to me about what we face. Yes, we have an inhaler...and a daily medication of a very high dose, and a nebulizer with two different kinds of medication, and steroids that make my baby cry when she has to take them because they take such a toll on her body. We are literally doing everything we can. Please don't doubt that.
I want to scream. I want to curse. But most of all I just want to sit here and cry. I just want to be seen in this whole thing, to be heard. I don't want pity. I want understanding for my child and for myself.
And I want to heal from this bitterness I have allowed to get into my soul.