If you have a child with ANY type of illness you have dealt with this before. Heck even chicken poxes or strep throat. You share that your child missed 5 days of school because they caught the pox, and someone will say, " oh that is bad, but my son missed 12 days! You are so lucky!"
We all do it. It can serve a good purpose, it does make me grateful. When I am feeling pretty sad about the extra challenges Abby faces, I read about someone who "instead of 5 days had it for 12" and suddenly, instead of being sad I am so freaking grateful that Abby's restrictions are so minimal. We are lucky! With food and environmental changes and avoiding medicines and staying homebound she is pretty stable- that is far more then many with Mito or Mast and many other chronic illnesses will ever be able to have.
But sometimes it is just wrong.
Try to voice an opinion and you will get shutdown with the "my child is sicker, so I KNOW more then you" sometimes said that bluntly but more often insinuated. The only message you will hear is, " you have no right to be as sad,scared,angry,or opinionated because you know nothing" (Jon Snow! sorry could not resist)
Total baloney. Really WRONG. Unfair. Cruel. Usually done in absolute innocence.
And boy am I Guilty of doing it.
Last year the youngest son of one of my oldest friends developed asthma symptoms. I mean the wake you up in the middle of the night choking and gaging..those moments where you fear for their lives, the not able to run around.. the steroids needed kind of breathing issues.
She and her husband were TERRIFIED. Shocked, scared, bewildered, confused, sleepless nights, guilt, uncertain of his future, not sure who to trust.
My first couple thoughts? Why are they so upset, it is JUST asthma.
Pretty terrible of me right?
I grew up in a home where either my brother or I were struck with days and days of not being able to breath. Like it was yesterday I can remember laying as still as I possibly could and telling myself to breath as a child, certain that each breath I fought for could be my very last. For hours and sometimes days. They did not have the preventative or breathing treatments they have today. During that era(many years ago) they still often blamed asthma on the child because they were too high strung, too sensitive. For me, it was Normal. My Dad has severe childhood asthma. My brother and I learned to deal with it, what choice did we have?
When my oldest was born and around a year old she too developed severe asthma? It was scary, but to my surprise they had all sorts of medicines they could treat her with, when I took her in and they sent us to the ER and spent days in the hospital each year because her breathing was so bad, I was shocked, she was not any worse then what I or my brother had suffered. For me, asthma was NORMAL.
Add to that Abby's life long journey of zero clarity, of never knowing "why" her body is so different.
You would think that would have made me empathetic. Understanding. Compassionate.
NOPE, to my horror I caught myself trying to figure out why she was so upset. SHAME ON ME.
When I stopped to think about it I did talk to her about it and realized a couple things.
Her family had never dealt with a childhood chronic life altering disease process. In that snapshot of his childhood that diagnosis was as bad as when we heard the word Mito and Abby in the same sentence.
She was as scared, as confused, as horrified, as helpless, as determined, as fearful, as I had ever been. She had to deal with Drs. that treated her exactly like we had experienced, the type of Dr. that acted like you were wasting their time, the Drs. who felt there was nothing wrong, the Drs. who blamed the parent or the patient..
To her the inhaler was as despicable as the thought of a feeding tube.
To her watching him sit quietly doing a breathing treatment was the SAME as me watching Abby having to ask for help to stand up.
To her knowing something was medically wrong with her child was no different then knowing something is medically wrong with Abby.
To her his future was as unknown as Abby's.
To her she lost just as much sleep as I had.
Get it? The emotions were IDENTICAL.
In the world of chronic disease I see other parents do the same thing I did daily. It is wrong.
I won't ever know what it is like to have a child who will never develop an adult mind, but then that parent will never watch their child develop a brilliant adult mind but have a body too weak to use it. To a parent with a child who will never marry or even understand marriage I won't know what that feels like, but they will never hold a sobbing adult mind in a broken body who grieves becuase she feels she may never have the energy to experience the joy of marriage. Where someone else's child will never experience a "normal" sleepover because their mind will never mature, they won't watch their child watch their friends go out to prom,friday night parties and dates and watch the child mourn she doesn't have the energy to experience what her mind so wants to try. I won't know what is like to bring a clearly severely disabled child to a Dr and have people uncomfortable to ask what is wrong, or people even avert their eyes in discomfort, but they won't know what it is like to take a child who looks so freaking healthy and try to convince a Dr. that they need their help because just the week before they were terribly ill.
Abby always says she has it easy. She said she has always been sickly. She said the ones who have her sympathy are the ones who had full lives, and healthy bodies and suddenly one day they lost it all. She said it makes it easier to not miss what she could never have.. I wish I had her insights.
Different symptoms but IDENTICAL heart break. IDENTICAl pain.
Her advice and her thoughts, and her emotions and her opinions are just as valued, justified and credible as mine.
I have learned a lot from her during that tough year. She has kindly let me work through my lack of self awareness. I will probably make the mistake again, but I am sure working harder not to do it.
When she talks, when she expresses how she feels I will NEVER think "what is she so upset about" again.
When it comes to us being Mom's of sick children? We are identical.