Wednesday, March 25, 2020

The Life I Never Wanted You to Live

A season of loneliness and isolation is when the caterpillar gets it's wings.  Remember that the next time you feel alone.  Mandy Hale

Well I am pretty sure everyone's world has been shaken.  Over the past week I have seen every reaction from people going to underground bunkers to people out licking street lamps to prove we are all overreacting.  (Yes it was gross, no I don't think I will understand people as long as I live.)

Understand that this isn't what I wanted for humanity.  What many of you have had to live is my life.  A choice we made willingly without fully understanding the whole package when we took on this little one eight years ago. 

When I sat weeping in the hospital three days after she came home and we almost lost her as quickly as we got her I was told she was fragile.  Like spun glass, a knock of the shelf of life could kill her.  Even though her will is strong her body is weak.  She needed to be protected at all costs.  I vowed if she made it home I would do whatever it took.  She did and I kept that vow. 

At first it was hard.  It was hard to explain to family that even if you had "been on tamiflu" for a few days you were still putting my daughter's life at risk.  Family gatherings had to be short and small.  Outings had to be measured in pros verses risks.  Often Marvin and Shannon would go to events while I stayed behind with Cary Lynn.

After a time social isolation became our norm.  I stopped caring and worrying so much about what others thought or felt about it.  It was right for our family and my daughter grew and thrived.  It would (and still does) get lonely at times, but I have embraced what needs to be done and never regretted the choice I made. 

But now many of you have to live this life too.  Some of you are angry, some are scared, and some are probably hunting for a street lamp to lick. It's a topsy turvy time and the world has gotten a lot scarier. 

This is not what I wished on you.  My isolation was chosen.  Yours was forced.  There is a world of difference in this.  I am sorry that you have to do this.  I am sorry that you have to live my life for this season.  It's not an easy life to have thrust on you.  To be an observer and not an active participant in life. 

But the good news for you is that this is only for a small season.  This will come to an end.  The isolation, worry, and loneliness will end.  I am hoping that it will end soon.  That you can go back to work, school, movies, Disney, and large gatherings. 

When you do go back, remember me and many other parents of medically fragile children.  What will end for you we will willingly continue.  I will celebrate with you as you go about your lives but I am hoping that you will remember in the back of your mind that for some of us, this season will continue. 

I don't say this to make you feel sorry for us.  I am NOT sorry for our choice.  I only hope you will have better understanding of why we say no to get togethers, social events and why it's important to keep our kids safe from germs that may be a simple cold for you but lethal to us and cut us some slack.  Our daughter matters.  Her health matters.  So does yours.  Stay safe and we will all get through this together. 

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Amy Fields is a mom, advocate and always looking for missing socks.  You can find her on her blog

Thursday, January 9, 2020

I Didn't Think About Your Daughter

In our house you will find that we are a blend of options in discovering what works best for our kids. You will see things you are used to seeing like medications, equipment, that sort of stuff.  Along side of that you will also see some non-traditional things as well.  Integrative medicine, my giant textbooks of herbal medicines, and maybe some familiar equipment used in different ways.

You see, I've had to stretch and grow to figure out what works for my kids.  We don't all come out of the same cereal box and things that work for others don't always work for us.  Things aren't always black and white.  They are often various shades of grey.

Recently my son was accepted into a unique study.  A worldwide research project is being conducted to see if a unique treatment can be beneficial for kids like my son.  It would help with some of his dietary woes and we were excited to try it.  The practitioner had recently relocated and gave me her new address.  When we arrived this is what we saw.

I drove around the building thinking this was a joke.  There wasn't a handicapped accessible spot anywhere.  So I called the provider and let them know we were here and the building had NO ACCESS!  

They came down and their first words were, "I wasn't thinking about your daughter."  Their last location was accessible and we were able to get my daughter up and down.  Despite the fact that we had seen this person in their previous location numerous times and my daughter was with me every time for some reason it escaped this person's attention that my child was in a wheelchair.  

The next words weren't much better, that this was a pro bono treatment.  Maybe I could find someone who needed community service hours to help with one kid.  They didn't want to treat in their home because that was their me time.  I was rather steamed and wanted to offer a shovel while they were burying themselves. 

Look, I feel like we need to have a conversation here.  You may not think about my daughter or the 2.2 million people in wheelchairs or the 6.5 million people who use walkers, canes, or crutches to get around but maybe you should.  

I'm not saying that every home needs to rush out and become accessible but I would like you to think about how it feels not to be included.  How hard it is on our family and others like us because our kids can't go places.  You may not be able to fix your home but how about finding a place that everyone can go to.  

If you are practicing medicine or holistic treatments think of the large population you are limiting. The people who would probably benefit the most from your treatments have no access to you. Clients that would pay you for your services if they could reach you will take their dollars and go someplace else.  

Bottom line, it's not OK and no amount of apologizing is going to fix that piece of my heart that just got a little more battered.  It's not OK to justify the lack of accessibility by saying that this is a pro-bono service.  Free does not mean that you can get away with whatever you want.  That would be the equivalent of me saying I could rob your home and take your valuables because I am giving you free babysitting.  It's a ludicrous argument.   

We drove for a while in silence.  My son piped up, "Mama are you upset?"  I told him I was, but I would try to think about our options.  "Well, I don't really need to do this.  I'd rather go someplace that is nice to my sister.  Maybe we can find something more fun to do, like legos!"  

The study would have been awesome, but you know what?  My kid already is awesome.  Both of them are.  If people can't see that then they are the ones with the real handicap.  

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I'm a mother, advocate and blogger.  This blog appears on my blog site as well but it's too important not to continue sharing.  Please follow me at