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

Wednesday, November 20, 2019

Book Review: Chicago Treasure

I had the recent opportunity to read Chicago Treasure by Larry Broutman, Rich Green, and John Rabias; and thought parents here may be interested.

Chicago Treasure is a picture book depicting a diversity of real life children, including children of color, children who are blind, children with different abilities. The book is filled with photos depicting children living out their wildest fantasies by placing their images into nursery rhymes, fairy tales, fine arts paintings, and some of Chicago's most iconic settings.

What brought a tear to my eye were the photos of the children, who otherwise struggle throughout daily life, living actively and flying freely in ways they could never and may never be able to do. The photos changed my perspectives of them and children with different abilities in general: if we don't see limits, maybe they stretch further our, and maybe even there are no limits.

The photos made me wonder about my own child with the "invisible" difference of mental illness. Do I place limits on him in my mind? I could picture him as some of those children, and it felt so light and open. It made me wonder, if I were being completely honest with myself, how could I picture him without limitations.

While the book touched my heartstrings as a mother, it's designed with a child audience in mind. As the pictures portray Dorothy in the Wizard of Oz or Little Orphan Annie mopping the floor or Rub-a-Dub-Dub Three Men in a Tub, there are story summaries and even riffs off the original rhymes that helps the pictures come alive. A beautiful book for bedtime.

What I enjoyed most were the pictures of children meshed into fine art. The photographs beautifully enmesh into the art, evidenced by one of my most favorite mash-ups from the book:

The creative team for the book also did a fantastic job realizing a child's fantasy of playing with wild animals in Chicago waterways.

With holidays just around the corner, this would be a sweet present for a child with an active imagination or young children just learning their nursery rhymes and fairy tales. What a way to develop a child's love of story and seeding their young minds with the idea that their limits are only as far as they choose.

Thursday, April 11, 2019

Boston Children's Hospital's "Thriving Blog"

My son Nicholas is diagnosed with Prader Willi Syndrome.

He has many complex medical issues.

He visits with many specialists located at Boston Children's Hospital.

Recently, he had spinal fusion surgery performed here

to correct the severe curvature of his spine.

Boston Children's Hospital has a blog named "Thriving"

In it, they write of their many unique patients and their very touching stories.

Today, Nick's adventure is featured on their blog:

Click this link: Boston Children's Hospital/Thriving

 to read our story and many others just like it.

As Hopeful Parents,

I believe many of these pieces

will resonate with so many of you who visit this blog.

I hope you enjoy reading them


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Lisa Peters writes about family life at:

 On a Life Less Perfect

Saturday, January 5, 2019

We Are Building A Wall!!!

I kid you not, we actually do want to build a wall.  

This wall is actually one that will be helpful to our daughter.  It's not what it will keep out but what it will keep in.  

We have been swimming in medical equipment, supplies, and the multiple day to day things needed to keep a medically fragile kid alive.  It's a good thing, but our house of 1,200 square feet is bulging at the seams.  

A lovely woman from the Closet Factory reached out to me after hearing my internet cries for help and organization.  She designed a system that will not only hold supplies but last us a lifetime.  

I'm sharing our Go Fund Me Link.  You don't have to donate, if you do that's awesome, but if you can't PLEASE SHARE IT!  Help us build our wall!!  

Here is the link!  CLICK HERE Thanks for your help!  

Sunday, August 19, 2018

No Rest for the Weary

"So, who helps you out in the home?"  The doctor asks this question and looks at me expectantly.

It's a question I'm used to hearing.  It's one I get asked at every appointment, every in home visit, and at least every 12 seconds when we stay in the hospital.  I always answer the same way.

"My husband helps when he's home.  My son pitches in and does well above and beyond his call of duty and when my parents stay they help out around the house with odds and ends."  I end with a bright smile but I know what's coming.

"But what about nursing care?  Who comes for that?  Do you have any help?  This is an exhausting and demanding job.  Your daughter is 24/7 care.  Plus I see in the records your son has disabilities as well.  You must be so tired and worn out.  Are you taking care of yourself?"   Looks of pity and compassion often follow.  Sometimes I get a hug or a pat on the arm.  Then they wait for my answers on why my magic wand hasn't poofed me up a service staff.

In my state (Virginia) there are waivers.  Cary Lynn is qualified for nursing.  The problem is we are at the bottom of the barrel and on a wait list so long it is a very real fact that my child may pass away before we receive help that may actually help us.  Pay for non skilled attendant help is $9.22 an hour.  No overtime, no benefits, and we are not allowed to add any additional income.  Turnover is high and retaining people is difficult.  The attendant cannot give medicines, drive, and other various restrictions.  Pay for skilled nursing is still low and you are at the mercy of an agency to find (or pretend to find) you a nurse.  I'm on the waitlist as we speak for six agencies.  It would have been eight but one agency told me that they don't work with her waiver because there is no money involved for them and the other agency told me I would be better off putting her someplace since we would be lucky to find any help where we lived.

I wish I could say because I live in the sticks of Virginia this is a unique problem and if I moved to a more populated location it would be resolved.  But it's not.  True, where I live doesn't make things easy but trying to make a living off of $9.22 an hour with no benefits is hard.  Turnover is high and interest is low.  This is a problem that is happening everywhere.

We have had help from the medical community and Noah's Children.  They call agencies for us and advocate.  Two hospitals have put in nursing orders and called my list.  They let me know they are fighting too.  I'm grateful, but not hopeful.  I gave up hope in finding help years ago.  It's easier not to become upset and rattled when you stop hoping.

Not having what you need can impact other ways of life.  I'm not able to work anymore, not because I don't want to.  I miss adults.  I had a fantastic job and loved what I did.  We make it work.  I also miss dates and alone time with my husband. This weekend was supposed to be a get away for two.  Guess who ended up needing to see a gi/motility specialist?  I think my last date night with my husband was about two years ago.  I miss dressing up and going out.  I also don't always go get the medical care I need.  Things change.

I'm also not writing this so everyone feels sorry for us.  That's not what I want at all.  Nor am I this amazing super human who has lived off of bad hospital coffee for years.  I don't want pity.  What I want is change.  If things don't change people like my daughter will continue to be treated like a sin and an abomination from the dark ages to be carted off to an institution. 

My kids are vibrant.  They have fought and will continue to fight.  We've had a few setbacks and scares recently that we are still processing.  But part of what we have learned from this is that we are going to have to fight harder for changes and for my children's rights. Letters have been sent, calls have been made, and we are ready to speak out more loudly than ever.  Change doesn't happen with a magic wave of a wand.  It takes time, hard work, and lots of pushing. I won't stop because the stakes are too high and loosing isn't an option.

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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

Thursday, September 1, 2016

Where Family Caregivers can get Help for their Child with Special Needs

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As this will be my last blog, I wanted to review the systems that family caregivers are navigating for their children with special needs and how to get help in a quick cheat sheet.

School Issues

There is a Parent Training and Information Center in each state.  They offer free assistance to families for both special and general education issues.  PTIs can help parents know what about their rights and school district responsibilities.  (See Resources)

Health Care

There are Family Voices (special health care needs) and Family-to-Family Health Information Centers in every state.  They help families for free on how to find health insurance, information on a new diagnosis, and getting therapies and other specialized services covered.  

Mental Health

There are actually 2 good resources for families:  the National Federation of Families for Children’s Mental Health and the National Alliance on Mental Illness.  They (again free) can help parents whose children have challenging behaviors connect to resources in their state to help.

Family Support
Besides support groups, Parent-to-Parent matches trained volunteer parents to a family of a child with the same condition (again free.)  They can also help families by sharing their own experiences.  For parents of children with developmental disabilities, there is a Governor’s Council on Developmental Disabilities in each state which is a good source of information to families as well as a Protection and Advocacy/Disability Rights organization.  For children transitioning to adult life, there are Centers for Independent Living that can help develop independent living skills.  

Family caregivers of children with special needs may be involved in many “systems.”  By finding organizations that provide information and support, they can get the best services for their child with special needs.  


Parent Training & Information Centers


Family Voices

Family-to-Family Health Information Centers

National Alliance on Mental Illness

National Federation of Families for Children’s Mental Health


Councils on Developmental Disabilities

National Disability Rights Network

National Council on Independent Living

Remain Hopeful,


Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB