Wednesday, August 31, 2011

Wordless Wednesday: It Starts Tomorrow!

This valve & tube can save a life!
*September is National Hydrocephalus Awareness month, more to come in the weeks ahead!
Hydrocephalus and hydrocephaly (Water on the Brain)

Tuesday, August 30, 2011

A Bill of Rights...

...for parents of kids with special needs is one of my most favorite blog-posts from one of my most favorite bloggers, Ellen, who is mommy to Max at Love That Max. Max doesn't have hydranencephaly, but rather cerebral palsy, yet is one pretty amazing little boy with a pretty amazing mom, who writes some pretty amazing stuff! So, be sure to click the link and visit her blog, you'll be a fan for life!

from June 17, 2009: A Bill of Rights for Parents of Kids with Special Needs

We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best. 

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are. 

* We have a right to choose alternative therapies for our kids. 

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever. 

* We have a right to wonder "What if..."every so often. 

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun. 

* We have a right to blast Bruce Springsteen/ Tom Petty/"Any Rocker", down a glass of Pinot Grigio, get a pedicure, go out with the girls, or do all of the aforementioned at once if that's what it takes to avoid burnout. 

* We have a right to react to people's ignorance in whatever way we feel necessary. 

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child. 

* We have a right to go through the grieving process and realize we may never quite be "over it." 

* We have the right to give our kids chores...... even better, if they can learn to make breakfast in bed for us. 

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio. 

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says "suck-y" things. 

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway. 

* We have a right to hope for an empty playground so we don't have to look into another child's eyes and answer the question: "What's wrong with him?" 

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children's challenges become glaringly obvious in the face of all the other kids doing their "typical-development" things. 

* We have the right to give our children consequences for their behavior. They may be "special" but they can still be a royal pain in the ass. 

* We have a right to take a break from "Google-ing" therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child's disabilities. 

* We have a right to talk about how great our kids are when people don't get it. 

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs. 

* We have a right to expect quality services for our children; not just when they're infants, preschoolers and elementary school age, but, when they're in older grades and adults, too. 

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them. 

* We have a right to get tired of people saying (as they give that sympathy stare), "I don't know how you do it."

* We have a right to wish that sometimes things could be easier. 

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Monday, August 29, 2011


Though this is not the story of one of our own little bees, who are living with hydranencephaly, I feel that Tim Krahling's story is one worthy of sharing... an honorary "bee".

The Tim Krahling Story
Having Left Home, A Survivor Adjusts to his New Life

"With Independence Comes Responsibility"
By Crocker Stephenson of the Journal Sentinel
Posted: September 16, 2007

He was the boy who was not supposed to live.
But the boy, whose birth spurred debate over the rights of parents and of society to care for a child born with severe abnormalities, not only lived, but grew up and became a man.
He graduated from high school, found an apartment, moved away from his mother's home.
And though family, friends, social workers, teachers and nurses remain at his side - indeed, remain critical to his survival - these are Tim Krahling's first weeks of independence.
Twenty years after doctors pronounced his spina bifida the worst they had ever seen, 20 years after they predicted his life would be a short and painful struggle, Tim is on his own.
At, where Tim's online tag is "Six Wheeler" - his electric wheelchair has six wheels - Tim has this to say about an existence that doctors once speculated would not be worth living:
"i love life!!!"
On a warm afternoon in early fall, the windows of Tim's one-room apartment are open. They look out to a grassy field. One of Tim's nurses, Chris Moreira, sits in a chair at the foot of his bed, reading a novel in the sunlight.
Tim has a friend over: David Zutavern, a 19-year-old University of Wisconsin-Waukesha student who, between political science and English, is getting in a session of the game "Bioshock" on Tim's Xbox 360.
Tim releases one face-splitting yawn after another. He stayed up much too late last night, because he felt like it.
Tim's adoptive mother, Kathy Krahling, lives in a house with three empty bedrooms a few miles from Tim's apartment.
Kathy and her then-husband, Henry Krahling, adopted Tim when he was 7 weeks old. Altogether, she is the mother of 10 children: three biological children, the oldest of whom is disabled; one stepchild; and six adopted children, five of whom are severely disabled. She was the foster mother of at least 25 children, most of them disabled. She cared for two foster children up to their deaths.
And now, all her children are moved away. Kathy is 59 years old. She is without children for the first time in 42 years.
"For the first time in my whole life," she says, "I don't have anyone depending on me but me."
Kathy is sitting on her back patio. Just months ago, with three disabled children still at home, her house was a chaos of caregiving. Now, but for two high-spirited dogs, it is quiet. The endless lists of tasks Kathy once needed to accomplish each evening are gone. She can sit here and watch the shadows lengthen across her lawn.
This is not the liberation one might think.
Kathy grew up feeling unwanted and unloved. She found in her children a chance to love and to be loved in a way that her own childhood had denied.
"In them, in all my children, I found a place to go with the love I had to give, the love that nobody else wanted," she says.
"They gave me more than they got."
These are the first weeks of Tim's independence. They are the first weeks of Kathy's independence, too.
Tim graduated from Waukesha West High School in June. A blue and silver tassel from his graduation hangs from the lamp on his dresser.
He still attends independent-living classes three days a week at Waukesha North, and he just finished a summerlong trial job at an electronics store. He's applied at the store for a permanent position.
One of the highlights of the past few months was his high school prom.
All school year long he harbored a crush for a brown-haired girl with green eyes. He would see her during lunch, but felt too shy to speak to her. At the prom, the brown-haired girl with green eyes asked Tim to dance.
Yes, he said.
Tim moved out of Kathy's house at the end of August. His 19-year-old sister, Lissy, moved to Henry Krahling's home in Ladysmith in July. His 22-year-old sister, Amy, moved to a long-term treatment facility in Juneau in May.
As each left, Kathy closed the door to their rooms. It took her a few weeks to open them again. Lissy will be visiting often, so she put a new bed in her room. She is slowly turning Amy's room into an office (a picture of an angel still hangs on the wall). But for an ironing board, Tim's room is empty.
Kathy adopted Amy when she was 12 days old. She was born without her brain's cerebral hemispheres and was not expected to live beyond two years. Lissy, born with an array of genetically based abnormalities, was not expected to live beyond six months. Tim was not expected to live into his second year.
These were the expectations Kathy had when she adopted them. In part, because of her care, each has lived decades longer. A blessing, Kathy says.
Perversely, as each child turned 19, Kathy stopped receiving special needs adoption subsidies. It was a loss of almost $1,400 a month for Lissy, $1,000 for Amy and $800 for Tim. This loss of subsidies was more than a disincentive to continue caring for Amy, Lissy and Tim.
"It made it impossible," Kathy says. "These kids are financially punished for staying alive."
On the door of Tim's closet is a list of things he must remember to do. Check his catheter. Empty his leg bag. Check his medication. Make sure he has set up transportation for work or for school.
"With independence comes responsibility," Tim says.
And other things. Tim lives as an independent tenant in an assisted-living facility. The advantage is that if he were to have trouble, his room is equipped with alarms. The disadvantage is that his neighbors are three or four times his age. Tim is profoundly social. But there is no one around to make friends with.
His biological parents visit. Kathy comes by two or three times a week. He has nurses. David Zutavern visits.
"I don't feel lonely," he says.
But much of the time, he is alone.
After David leaves, Tim takes the elevator to the public computer on the facility's second floor. He signs into his account. After he deletes the dodgy-looking messages, he is left with about a dozen people on his friends network. Most are people he doesn't know. A message pops up: "Angelina (of Fort Wayne, Ind.) wants to be your friend."
"I don't know any Angelinas," Tim says, and deletes the invitation. The Journal Sentinel published a series of stories about Tim Krahling's life this year. "In a Child's Best Interests: The Tim Krahling Story" is at

Sunday, August 28, 2011

Bee Inspired: Wings of Encouragement

Oftentimes this journey is an exhausting one; full of unknowns, difficult decisions, and obstacles that may or may not prove to be overcome. Hydranencephaly is a powerful word that changes the lives of all involved in a matter of seconds; without the opportunity to adjust or accept, it is simply thrown at your child. 

From the Wings of Encouragement page on Facebook this morning:

‎"Life happens whether we want it to or not;
Sometimes its realities can burn us in the pits of our souls;
That's when we reach out and share our feelings;
Putting out the flames with tears from the depths of our hearts;
We keep moving forward no matter how hard life may seem;
We find something of which we are truly grateful for;
As long as it puts a smile on our face and brightens our path;
We can hold onto its pleasures and restore our outlook on life;
Then we reach out to someone in need;
It's a proven remedy, which allows an aching heart to be freed;
So hold on my friend no matter what may come your way;
These feelings are not here to stay;
They will pass through , onto the other side;
So rest assured, you will come through this a better you;
Then you will tell your story and help someone else through!"

                      ~Wendy Box, AAP Certified Counselor

Saturday, August 27, 2011


We are  nearing the last few days of our Summer Fun Photo Contest showcasing children with hydranencephaly on Facebook which began on July 15th and wraps up at midnight on August 31st. At that time, the photo with the most "likes" will win:
THIS Fizzy Scentsy Warmer, donated by our friend/Scentsy Consultant, Jessica

Complete with 3 varieties of scent bars

Item image
that's RIGHT... $50 to e-bay, imagine the possibilities!!
It is not too late to enter your favorite pics of your little ones, living and loving their summertime with a hydranencephaly diagnosis. You can either email them to me at: or tag me, Alicia Harper, in them on Facebook where I will promptly add them to the album for voting. 

To vote, and to ask your friends & family to vote:

~simply "like" our foundation page on FACEBOOK
~visit our Summer-Fun Photo album
~click to "like" your favorite photos

Currently our sunbathing beauty, bee-angel Gabby, is in the lead with 67 votes:

Be sure to continue following our foundation page on Facebook to stay up-to-date on all of the latest and greatest involving our families...

Friday, August 26, 2011

Flashback Friday

As a Navy family and current residents of Norfolk, VA  in the path of the monstrous hurricane Irene, I have packed my munchkins and my fur-baby Roxy up and we are in a hotel 200 miles from home for the weekend. The blanket I grabbed to bring along for Brayden, one of his favorites that is covered in monkeys and bible scriptures, brought me back to the day we received it in the mail, unexpectedly. The wonderful individual who had made the blanket especially for my 'lil man, as well as many other little ones in need of prayers for healing, had discovered Brayden's need from stumbling upon his CaringBridge journal.

I needed to visit my old blog to re-read the story behind this wonderful gift, one which I want to share:

By His Stripes
originally posted on October 16, 2009 at Small Portion of a Life's Journey

My son received a package today. Here is the letter that it contained:

"Six Years ago as I sat in Church listening to our pastor speak of how his mother overcame terminal cancer I had an inspiration. His mother had been given only 6 weeks to live... the doctors believed one thing and she believed another. She opened her bible and chose forty scriptures promising healing to recite many times daily. A few weeks later she was completely healed of cancer. (That was 25 years ago.)

I came home from church that Sunday and I have never looked back. The Holy Spirit gave me a great inspiration and when I told my husband he was so supportive. I created a couple of quilts to show our pastor, friends, and family and ask for suggestions. "By His Stripes" became our ministry.

If a child can cover themselves with God's word, imagine the possibilities.

With God's guidance we have donated over 400 quilts to children and adults. I do all the sewing and God supplies the means.

May God bless you and your family...
In Christ, Amanda
                             Isaiah 53:5 
Jesus bore your sins AND your sicknesses. But He was wounded for our transgressions, He was bruised for our iniquities; the chastisement for our peace was upon Him, and BY HIS STRIPES we are healed.

And here is the gift the package contained, not the cute little boy... he was mine already:

Thursday, August 25, 2011

Thankful Thursday

Today, and every single day, I am eternally thankful for the amazing "family" I have among other parents to children who have a diagnosis of hydranencephaly, or other similarly debilitating conditions. Being a parent to a child with special needs can be an isolating situation in itself, throw in a whole host of medical fragilities requiring you to stay home with your child and the isolation engulfs you. You're excluded from play groups, PTA, volunteering at school, birthday parties, and oftentimes the entire "real" world. 

Finding a support group is essential, not only for guidance and advice, but for the ability to lean on these individuals who just "get it" without you having to explain it. Let's face it, even when we try to explain it, no one ever gets it unless they are living it themselves...

One of my most favorite books is called, "Changed by a Child: Companion Notes for Parents of a Child with a Disability" by Barbara Gill. I pull it out and read it over and over again, as a reminder of being thankful for what I have. Today, as I remember how thankful I am to have the Hydranencephaly Family-to-Family Resource Network, this "note" spoke to me:


Often others seem to feel a special responsibility to puncture our hopes. They say things like "You know she will never learn to read," or "you need to accept that he doesn't know what is going on around him, " or "He's doing well now, but he will reach a plateau."

They would say we are in denial, that our dreams are "false hopes," from which we must be protected. God forbid anyone should go around entertaining false hopes! But, in a certain sense, what other kind of hope is there?

Hope is the thing that is willing to take a chance on the future. And who is audacious enough to say what the future will bring? Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn't' face, then hope has done it's job.

There is a worse thing than false hope. It is no hope at all.

The isolation from the "real" world that I speak of is actually a blessing and a curse, blessing to be embraced by those who live on hope while a curse that it is a difficult place to find yourself in. It's very challenging to remain optimistic and hopeful when you are nearly constantly reminded of all the reasons you should give up on hope... even when it's not thrown right in your face by a loved one or acquaintance, it's everywhere you look when your child is less than "typical". 

Find a support group and lean on them, they'll be your "family" when the rest of the world just doesn't get it.

"A friend is one with whom you are comfortable, to whom you are loyal, through whom you are blessed, and for whom you are grateful."

~William Arthur Ward

Tuesday, August 23, 2011

Wordless Wednesday: Bee Well

The What, The When, The How...

Sometimes reality hits you with a sucker punch, when you least expect it. My reality always strikes when I read of another little bumblebee buzzing away to join the angels... something that, sadly, has been happening far too often lately. It always seems to come in clusters... 

The questions regarding death... these are the questions everyone wants to ask, but never actually does. Instead, they make assumptions or feel extreme pity and share their sympathies. Those that know the lives of the children living with hydranencephaly well, feel pity for the parents and/or caregivers, that they are either in denial of the actual prognosis or that they will be saddened to days without their child one day and not able to cope. Those that know of the condition only, and maybe just a little more about the wonderful days they live, feel sheer sadness for their inabilities rather than happiness in their exuberant joy of life. As if parents are merely prolonging the inevitable, in a selfish quest to sustain  life beyond a level of comfort. 

To fuel these thoughts are those in the medical field who encourage parents to terminate pregnancies upon prenatal diagnosis, or recommend starvation or over-medication to end the suffering of their child once they have made their unexpected debut. I cannot ignore that this happens, I witness it on a regular basis, and I only wish that more would refuse to ignore these cases. I lived it myself, battling doctors against termination and refusing to medicate with morphine as Brayden was an infant while also choosing to conquer feeding issues despite being told that my son would not thrive... where are you now, doctors, now that he is three??

To break the boundaries, and prove that I'm not in any sort of denial at any moments time, I'll share what I know in regards to life expectancy and longevity, answer some "whats" or "hows" or "whens" of this condition that my own son, and many of his friends across the globe, are living with...

So, "How long will they live?" 

I think that every time someone reads a post I've made stating that Brayden has hydranencephaly (in mention of a small milestone he has achieved), they immediately Google the condition and read the definitions found there. After personal research, if I've told them that he is missing a large majority of his brain, it is unfathomable to most that he can achieve anything at all. Fortunately, I took it upon myself to update the following pessimistic Wikipedia definition that ended with the below outlined prognosis, with a much more optimistic version that you should take a few minutes to read:

There is no standard treatment for hydranencephaly. Treatment is symptomatic and supportive. Hydrocephalus may be treated with a shunt.

The prognosis for children with Hydranencephaly is generally quite poor. Death usually occurs in the first year of life.

In a survey completed by 88 families of children with Hydranencephaly from 2006-2007, 69% of the children who had died, did so after their first birthday. The oldest of the children who had died was in their 20s. 62% of the children represented in the survey were over the age of 1 at the time it was filled out. The first year is the hardest for children with Hydranencephaly but survival is possible.

The oldest known survivor was 32, and was observed to have noncortical responses to auditory stimuli.

While I maintain the accuracy of the newly optimistic version of the Wikipedia definition, I regularly receive emails that challenge my accuracy... because it is "medically impossible to thrive without a cerebral cortex as defined in hydranencephaly." (yes, those are the exact words used in most every email received) and sadly medical text supports this impossibility, though it is clear that it is possible.

Not only was this the first thing that people used to read, but the last thing they read is about the poor prognosis. I was given this information from Wikipedia as a resource from the doctors that presented the diagnosis after Brayden's birth, as I am sure other parents are give as well. The fact that death usually occurs in the first year of life, immediately assuming that I must be wrong in thinking that so many of these little ones are doing wonderfully... incomprehensible. I guess you have to be a parent of a child with a "terminal" condition to understand that there will always be the textbook definition and then there are the real-life versions. The truth you learn from others living similar life experiences as yourself, that is what ends up being more factual in the end, not the doctors and certainly not those evil textbooks. This is why a large portion of our mission is networking families, they are the true experts in the field.

The Rays of Sunshine website conducted a survey in 2002 showing the average age of a child living with hydranencephaly is nearly 8 years. That is only an average, so as you know there are many children who do not live to be that age, yet many that live well beyond those years. In some of the instances, believe it or not, life was shortened due to a doctor refusing to treat a child properly upon the onset of one of the many complications that can arise. But, in my opinion, that number does not mean anything.... in fact, it should not mean anything in treatment options for our children. 

It has been said that the first year of life with a child with hydranencephaly is the hardest, and most pass away during those first 12 months... it is supposed to be easier after that point. Some live for 20 years, or even more. In my experience, and in networking with other families, the quality of life is what you strive to make it... the right support, resources, and positive influences are essential in helping these little lives thrive.

On a personal level, those definitions and negative prognoses really affected me in the beginning... as I am sure they do every parent when faced with a diagnosis of hydranencephly for their child. The not knowing "when" was the hardest for me, not wanting to become too attached because I knew my son would be ripped out of my arms at any second without even a moments notice. Feelings of great jealousy over those who were so fortunate enough to just have never made the greater connection with their baby before they were taken away, then the greater guilt I felt for feeling that way to the many parents of children lost to still births or miscarriages. There is no way to weigh the heaviest of the two losses, they're both unbearably devastating to a parent...

It took a great amount of time, but I came to a realization and accepted that I was the fortunate one. The remembrance that no life is guaranteed, that I have two other children that can just as easily be taken from me without warning, not to mention any other single person in my world that could leave it at any second. Life is not a guarantee, we are not insured to see another day. I finally came to a point when I could really enjoy the fact that I had been blessed with the most wonderful gift I could ever receive, and am still in the processes of learning everything that this gift will teach me. The greatest lesson, my ability to see every little moment as a blessing and to treasure every moment as if it could be the last, has been the ultimate gift received.

One of the best bits of advice I have been given and continue to share with other families, is to "take many pictures, since you will never feel that you have too many pictures... when they're gone, you'll still feel as if there are not enough!" I am scared to not have enough, or that one day I'll forget my precious boy. That my mission with this foundation will die when his earthly body has failed his soul. I now only hope that I am given some sort of warning, that he passes as nearly half of all do of an illness since I know that he is going to earn his angel wings sooner or later. I may be the only mother on the face of the planet that HOPES for an illness to take their child, but I want the warning. Or I want the weeks, or maybe even months, of time that it takes for all systems to just "shut down". I want to know that there is something wrong, not feel as if I missed some sign or neglected to notice a problem at the end. That it doesn't happen unexpectedly, or more importantly, during these times that I feel he is doing so wonderfully.

More oftentimes, it has been said, that children with hydranecephaly pass away from a multitude of problems that build-up, making it much more difficult for their bodies to overcome even the most minor of illnesses. Respiratory conditions prove to become fatal quite often, which is a reminder as to why a case of the sniffles is big business in our households. The fact that I know the pessimistic mentality of so many doctors, scares me as well. Parents are left wondering that if their child were in trouble, would they receive the same life-saving procedures that a "typical" child would receive? 

This only proves another reason, why I want to know everything I can, why knowledge is powerful... and to continue to be the aggressor, helping other parents along the way, when it comes to treatment for our children.

I'll be the aggressor as long as I know that my son is benefiting from treatment I'm fighting for. If there ever becomes a point that his little body is too tired to stay with me, it will be hard but I will find the selfless strength to let him go. It brings tears to my eyes to even type about it, we do know that there will come a time that this will happen. We embrace those that have said goodbye while learning from their grief as well. 

Until then, parents can only provide their child with the greatest quality of life possible. I always encourage parents to allow their child to participate in everything they do, even if it is sometimes with a little less enthusiasm than the rest of the family. They can go everywhere the family goes, even if it's not a stroller/wheelchair friendly adventure, there are ways to accommodate and I'll be happy to share how we have. Always accommodating to be sure that they are able to live their little lives fully and, more importantly, at the highest quality possible. 

We will wake up each day remembering that the day is a blessing, and go to sleep every night thankful for that blessing... hoping and praying for another wonderful day. But only He knows the plan...regardless of what is written. I have yet, in all my research and family networking, found one child who had an expiration date stamped on their little bodies... 

"Believe in the Impossible"


Alright, I was in a funk... it happens. This journey, regardless of how optimistic you try to be, just sucks the happiness out of you sometimes. But that's the joy of hope and optimism:

‎"Hope is a renewable option: 
If you run out of it at the end of the day, you get to start over in the morning."

~♥ Barbara Kingsolver

Sometimes it takes a few mornings, but eventually it comes back strong... now to play catch up with everything I neglected in the meantime. Such as this week's Bee-ography...

My thought process

So often I feel like there are such high expectations placed upon parents and caregivers of children with extra special needs. We are constantly told how strong we are, how inspiring we can be, how another parent "would never survive" the days we endure... but what about the days that we aren't these strong-willed individuals? We're not superheroes... at least not every day. 

While in other cases, we are classified in to some strange breed of parent. We are looked at differently, no longer a fit for invitations to mommy meet-ups and/or play groups, and instead left living a very lonely existence when we are still mothers, fathers, carers, and people who love our children... often more than those who are accepted in to society's idealistic mold. 

And, in part because I neglected gathering a new bee-ography this week and partly since my education in psychology has taught me that self-disclosure and self-examination/evaluation is an ultimate healer (my funk still needs a bit more healing)... you will get my mommy-ography this week:

So amidst the stories of our little bumblebees, I will start including stories of the parents to these little loves. An awareness of our realism, our struggles and obstacles... our raw emotions. Through life and through death of our little bees... before and after.

To start this new blog addition, this is me:

I'm Alicia or Ali, while founder & president of the foundation that has inspired this blog (Brayden Alexander Global Foundation for Hydranencephaly), I'm also:

~a struggling with stay-at-home status mommy, even after 3+ years  
~an unsure and insecure, yet very spoiled & loved (even when probably not deserved) Navy submariner wife
~a trying-to-be full-time college student who cannot decide which path to take, so in the meantime takes random breaks to re-evaluate, but is still oh-so-close to graduating with a bachelors in psychology

who absolutely loves her girlies, even when being whiny and full of "I wants", and her littlest and biggest men.

I was born in Missouri, a miracle myself having been born with a rare and previous to birth undiagnosed condition called gastroschisis. Essentially, my insides were on the outside, which miraculously left me with not much more than an ungodly scar down the entire length of my stomach and no other health issues to speak of. I took years of piano lessons, lessons in baton twirling, and reluctantly wore horribly ruffly dresses in my youngest years.

I grew up, from the age of 8 or so, in the tiniest of tiny towns in Missouri, Laquey (which is not pronounced with a "q" sound but rather as "lake-way") where I was a band "geek", who excelled in music, while attempting to play softball (while horribly) in the field across from the smelly dairy farm, sitting the bench in volleyball more than I played, who found myself bullied for still unknown reasons to the point of developing a huge dislike of my high school years and never fading insecurities, but still had the same boyfriend through most of my high school years who I thought would spend my lifetime with until the inevitable high school ending happened, and eventually escaped to the Lake of the Ozarks where I spent 10 years learning from mistake after mistake. whew!

"If you're not making mistakes, then you're not doing anything. I'm positive that a doer makes mistakes." 

~ John Wooden

I was certainly a "doer." I managed restaurants, worked the longest hours possible, drank far more alcohol than I should have and dabbled with things that most adults will not confess to touching. Then I became a mommy... and those things, though slowly, became the past. A part of my past that brought me to where I am now...

It sounds crazy, but I remember thinking when I became a mommy that it was strange I did not know other mommies of children with special needs. I had friends with typically developing, seemingly perfect, healthy kids. I had been an aide in special education classes in high school and volunteer opportunities. I had always had a huge heart for individuals with obvious disabilities, once scolding some of my best friends for making fun of people with mental retardation (a word I've always hated, but hate far more now) and secretly always felt a premonition that I would be living that life one day. Not as a disabled individual, but that I would be the mommy with the child who had disabilities... sounds crazy, but I always kind of knew.

I have two girls, ages 9 and 6, who are perfect in every way. They're well mannered, polite, loving, smart, and the most beautiful daughters a mommy could ask for on the both the inside and out. They're full of drama, full of life, full of giggles and emotion, and cover my world with glitter.

Now, with my third round on mommy-dom, I am that  mommy... just as I knew I always would be. I juggle frustrations from having to tell my girls, who were likely overly spoiled in the past, no because we just cannot manage everything with everyone, one of those everyones being in a wheelchair with no independence, and their spoken our of frustration desire to live with their biological dad, soon to be step mommy, and baby brother on the way. Though I know it's only out of frustration, where some kids say they're "running away from home", it hurts just the same.

I'm fortunate to have an amazing, supportive husband... even if he doesn't share with me his amazingness and support due to his own, typical to most men and admittedly shared by myself, inability to communicate. My kids, girlies included who are blessed with two, and my step-son Seth are fortunate to have this guy as a daddy. It's true when they say that marriage is hard, but a million times harder with a child who has extreme medical necessities. One of my biggest struggles continues to be finding peace and security, when I've never even been given a reason to not have both, in my days. Another is struggling in a household that includes a spouse while also living my days feeling more like a single parent... thank you US Navy, for reminding me of what qualities an individual must possess to single parent children for an entire lifetime.

While I've learned to accept compliments with more grace, I still do not really like them. Words such as "inspiring" or "strong" or "amazing" are wonderful to hear, I point those out since I hear them often, but not how I feel. I try to be, I want to be, but I'm not always. I have times when I want to give up, to give in and stop fighting all day every day as is required when parenting any child but especially a child with hydranencephaly. I don't always want to be the hero, the one who speaks up and speaks out against such negative individuals that plant themselves in my life or the lives of the ones I love the most. I definitely do not feel amazing, rather very lacking in the amazing category. But I do strive to be these things, feeling rather successful a majority of the time... only because I make the conscious effort to surround myself with people who are the same.

"Desire is the starting point of all achievement;
 not a hope, not a wish, 
but a keen pulsating desire which transcends everything." 

~ Napoleon Hill

I spend my days laughing and crying, sometimes at the same time, but more often because I'm happy than because I'm sad. I'm an emotional wreck more often than I'd like to be, though the highs are far more often than the lows. I'm so situated in on-guard mode, that I'm way with everyone... defensive, sometimes probably intimidating and bitchy. I'm completely indecisive, about everything from what to make for dinner to what to do first for the day to what I want to do with this elusive college degree for the rest of my life. I struggle with not working outside my home, after never really being exposed to anyone who was a stay-at-home mother before now, but I'm adjusting in my own time. I love the people I love because of who they are, not for who I want them to be and expect the same in return... being fortunate to have many loves in my life through friends and family from near and far, some that I've never nor will ever meet but are closer to me than those I've known a lifetime (you know who you are). 

And for just a little more: I wish on stars and believe in happily ever after. I despise judgmentalism, even if it isn't a real word, you get the point. Stereotypes and generalizations irk me, even if done in a joking manner. I am completely stubborn and open-minded at the same time, but believe what I believe and cannot be coerced easily. I take things the wrong way, and over-analyze everything, but generally work the negatives out in my head before they overwhelm me, which ends in my apologizing... a lot. 

That's me... I'm a real person. I yell at my kids sometimes. I get frustrated and am unreasonable other times. Sometimes I roll myself up in my blankets and sleep away a day... rarely, but sometimes... only to escape a heavy load. I'm not a hero, I'm not amazing, and I'm certainly not anyone in a place to be admired or envied. And strong? If being scared to death, every second of every day of that very thing... death... makes me strong, then yes. My crazy days are my normal, while chaos in another's eyes. 

Please look forward to reading other mommy-ographies as contributed in the future. I hope that others will share... not only is it therapeutic for you as parents, but it's also revealing to others who have this envisioned cookie cutter for parents of children who have special needs. 

Friday, August 19, 2011

Bee Inspired: What I Would Tell You

What I Would Tell You…….

© Copyright 2011 by Julie A. Keon. All rights reserved.

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011
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