Saturday, April 11, 2015

Fortune's Wheel

Once in awhile I dream this fantastic dream.  It's spring and I'm in the park with my kids.  We are on a grassy hill.  There is sunshine, trees, and butterflies.  I am sitting on a bench talking to an unknown person.  In my dream I know them.  As we talk I watch both kids play.  The part of the dream that takes my breath away is that there are no AFOs. No wheelchairs.  Cary Lynn runs strong and free. There has been no abuse.  Both of my children are healed, happy and whole.

Sometimes when I talk to this stranger I complain about how hard things are.  Then the person asks me, "Do you want your children well."  I grow silent and don't answer.

Then I wake up.  I wake up to doctors, therapies, wheelchairs, ptsd, and those horrible Afos.

The question is simple, but at the same time a loaded gun.  You would think that any sane parent would say "YES!!  I want them well!" But for me it just isn't a black and white question.  It's so many shades of grey.

First of all, I do wish they hadn't been abused, neglected, and suffered.  I get weary of fighting the world around me for services, going to doctors, and instead of medicines, sensory diets, standers, and medical paperwork that has taken over my craft area. I want my days to revolve around stories, cuddles, giggles, Barbies, and trucks.  I want to call my friends up and instead of discussing Cary Lynn's latest medicines and Marvin's latest therapy talk about what I watched on TV, or what I saw the neighbor doing (probably not, we live in the country and have so many trees that if the neighbors were doing something good, I'd never catch it).

But here is the tricky part.  If you spend your whole life yearning for what you don't have you miss what you do have.

If my children were "well" they would never be mine.  They entered into the system because they weren't cared for.  I would have no Marvin or Cary Lynn.  They would belong to another and that alone chokes me up because this house would be so empty and lonely without them.

If my children were "well" I wouldn't have gotten to know the strong community of women who stand by me.  These women are amazing and their kids are amazing too.  Our children have brought out the best in us.

In my life and travels I have talked with many adults with disabilities.  They inspire me.  Sometimes I get brave and ask the question.  About being "normal and well".  Guess what their answer is nine times out of ten?

No.  Yup you heard me.  So then I ask why?  And they look at me like I've grown two heads.  I get responses and this is a compilation of what is said.

"Yes, some days we do want to do what everyone else does.  It would make life easier.  But they learned that they had so much to offer.  That they could push boundaries, fight for equality, and most of all teach us that just because you are disabled doesn't mean that you you don't have things to offer or that the gifts you have are inferior.  That diversity is the spice of life.  And that we all matter. "

Plus, what dawned on me is if I also spend time wishing my kids well I send a silent message that what they are now isn't good enough.  While I firmly believe that we can work harder to be better people, I don't want my kids to feel like they don't measure up.  Because they do.

I say it often and I mean it.  My kids are amazing.  And they have so much to offer the world.  And they matter to the people around them.  And to me.  So even though I'll probably never call with good gossip about the neighbors I will enjoy the two precious lives that I have and celebrate who they are as is.

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Amy Fields is a wife and mother to two special needs children.  You can follow her at her blog Many Kinds of Families

Wednesday, April 1, 2015

“Knowing What to Say When Your Child is Seriously Ill”

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The Conversation Project has developed the “Pediatric Starter Kit:  Having the Conversation with Your Seriously Ill Child” which is helpful to both parents and professionals.  This kit covers what families can say when their child is very ill, and how to answer their child’s questions.  It is broken down into sections:  “Get Ready”, “Get Set”, and “Go”, and “Keep Going.”  Although it may be difficult to think about, this is an important resource which is helpful to families because this is a conversation that needs to happen. 

“Get Ready”
This section is on preparation.  One of the main questions is, “Is it better for my child not to know how sick he or she is?”  This is a question which depends upon the age or level of understanding of the child.  It is assuring to parents that “It’s okay to ‘go there.’”  Interestingly, it is noted that while families are trying to protect their children, children are often also trying to protect their parents!  The parent quotes throughout the article raise awareness of the issue.  One parent states that children “sort of already know the answer.”  Two key points included, “Children often sense that they’re dying even if nobody is talking about it,” and “Talking about death will not hasten it.”  Of course, each family has to determine how they feel about raising the issue of death with their child, because they don’t want to give up hope, or have their child give up hope, too soon.   

“Get Set”
This section is on how to start the conversation.  Some good suggestions for hospitalized children include having a “favorite stuffed animal…piece of clothing…picture of a favorite place.”  Comfort items are always a good idea and, if allowed, decorating the hospital room with pictures.  We even made a “garden” on the windows of each room in which we stayed at Children’s Hospital using window markers. 

Some parents may be troubled by specific examples in the book.  For example, one parent told her child, “I think you’re right” when he said that he did not think the doctors would be able to cure him.  Some parents may prefer to respond, “You could be right” in that situation, which would still validate the child’s response but in a gentler and less definite way.  Some parents may question whether statements such as, “The doctor doesn’t think there’s any more medicine to make your cancer go away” take away their child’s hope, while others may feel that honesty in this situation helps both the child and the family prepare for the child’s death. 

Supporting children’s choices is important and the suggestion to post something for the care team is a great idea such as, “Please don’t stand around my hospital bed and talk about me as if I weren’t there.”  Families can ask staff like social workers for advice.  There is a way of saying things being truthful but not "brutally honest."  For example, pediatric transplant coordinators will tell patients that the medicine will help with pain, not that it will cure them, if they are terminally ill.


This section is about actually having “the” conversation.  It is emphasized that parents must ensure that their “child’s wishes are respected.”  This is vitally important no matter what happens.  Once families ask social workers for help and know how to proceed, they need to address the concerns of their children.  Many children’s hospitals have Child Life specialists that explain medical procedures to children, sometimes using tools such as puppets.  It is also important that the child’s choices do not interfere with medical care.  Sometimes children may have to go through uncomfortable procedures but there may be things to help such as numbing cream for IVs/labwork. 

Keep Going
This section covers how to continue the conversation.  Families can ask children, “Do you think you’re dying?” or “What makes you think about that?”  Child-led discussions are best.  An excellent suggestion from a parent was saying “the doctors are going to continue to try their very best to find a cure, they will never stop, but they may not be able to find a cure in time to beat this disease.”  This is a better approach as it is more realistic but doesn't give up hope.  Research has indicated that even when patients were anesthetized, they internalized what was said during surgery and it affected outcomes.  In discussing siblings, it states, “Each child within each age group will have a different understanding of what death is.”  This is true of the affected child, too.

One parent commented that what “would be a good death isn’t necessarily the same for all parents.”   Providers also need to be aware of the cultural differences when serving diverse families.  Lastly, there is a list of resources for families.  However, one important resource that is missing is Compassionate Friends which supports families after the loss of a child; local groups are found at  Generally, this is a very good resource for parents in an extremely difficult situation.   

In conclusion, these are important conversations that families must consider how to have with their children.  But how it is approached is a personal decision made by each family. 

A version of this article was also recently published by Exceptional Parent magazine

Review of Pediatric Starter Kit

Link to Pediatric Starter Kit

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