Thursday, July 28, 2011

Buzz Alert: We Expect Respect

Terri Mauro,'s author of the Children with Special Needs Guide, has been a huge source of resources and guidance to many families who are on this journey. Currently she has posted this manifesto, "We Expect Respect." for families of children with extra special needs:

We Expect Respect
A Manifesto for Parents of Children With Special Needs

By Terri Mauro, Guide

As parents of children with special needs, we deal with a wide variety of disabilities that raise a wide variety of concerns and require a wide variety of accommodations. We do not speak with one voice on many of the things our children specifically need to be safe and secure and included in the life of their community and the wider world.

But there's one thing we can all agree on: our children deserve respect.

They are not nuisances. They are not inconvenient. They are not impediments put in your way by troublemaking parents. They have a right to live and to learn and to play and to worship and to dine and to travel and to participate, by virtue of being human beings and citizens of their communities. We recognize that this may not always be easy, and we take responsibility for helping make inclusion happeninstead of expecting it to be done for us. But the very first step, always, regardless of the situation, is respect. Respect our children. Respect our families. Or don't expect us to respect you.

What does respect look like? It does not mean acceding to our every demand and accommodating every problem. (Though that would be fine.) It means taking our children's needs seriously, and working in a conscientious way to find an acceptable solution. It means stepping out in front and presenting a coherent and compassionate policy rather than waiting for a problem and reacting defensively. It means treating children with special needs and their families as you would any other customer, any other worshiper, any other taxpayer, any other voter, any other community member. It means not sending out a message that says, "You know, we don't really serve your kind here."

Because there are a lot of "our kind," and we are growing. We have been fragmented by our specific challenges and conflicting needs, but we now resolve to be united by our common expectation of respect. When you place an inflight snack choice above the life of an allergic child, you anger us all. When you care more about rude complaining diners than the family of a child with autism, you eject us all. When you value worshipful silence over compassion for worshipers with disabilities, you wound us all. Whether or not our children share those same disabilities, whether or not we would have made the same decisions as those parents, we still know what lack of respect looks like, and we will recognize it in your actions.

And we will act. We will remember. We will find our voice as a special-needs community, and we will stand together. We will demand respect for our children and our families, and for the adults with disabilities our children will become. You will find us to be fierce advocates. We would rather get respect without fear, but we'll take it any way we can get it. Do the math. And do the right thing.

+ + +

If you're the parent of a child with special needs (or a family member, friend, or well-wisher), and you feel ready to stand up for the rights of children with disabilities regardless of their specific needs, add your name to this manifesto, along with your own message, by replying to the Readers Respond page below. Can we band together for our kids?

Please take a few minutes of your time to visit HERE to sign the manifesto in demanding respect for our kids. Whether you're a parent to a child with extra needs, a friend or family member, or simply if you're here because you stumbled upon this blog... we can agree that all individuals, especially those of the littlest variety, deserve respect.

Monday, July 25, 2011

"Bee"-ography Monday

Ok, well this isn't necessarily a "bee"-ography, it's actually about a family we have not reached yet but that I wanted to share with you all. Perhaps you know them, or are near enough to help with their golf tournament.

Memorial scramble slated

Sunday, July 10, 2011
Pierson DeHart died May 7, 2009, after suffering hydranencephaly. His parents have set up a golf scramble in his memory, which will take place July 30 at the Forest Park Golf Course.
Two years ago, Melissa and Chris DeHart suffered a loss no parent wants to face.
Their son, Pierson, died, May 7, 2009. He was 22-months-old.
Pierson was born July 30, 2007. While in-vitro, he suffered a stroke and developed hydranencephaly, which occurs when a traumatic experience cuts off the blood supply to the developing brain and sections of the brain are replaced with Cerebral Spinal Fluid.
Throughout the trying period, The DeHarts began to come up with an idea to help others in need while also creating a way to memorialize Pierson.
The end result -- The Pierson DeHart Memorial Golf Scramble -- which will take place July 30, at the Forest Park Golf Course.
According to Melissa, lunch will be served at noon, with tee-times set for 1 p.m.
"We feel so blessed that God chose us to be Pierson's parents," Melissa DeHart said. "We thought it would be a good way to honor the memory of our son while doing something special for another family in the community that is facing the same blessings and struggle that we went through."
Proceeds from the tourney will go to help benefit families in need.
This year, proceeds will be given to Carter Quinn, son of Joe and Stephanie Quinn.
"His name was given to us from a friend and after finding out that he received a piece of equipment that Pierson used in therapy, we knew that this was the first family we wanted to bless," Melissa said.
She hopes the tourney becomes an annual event and all families chosen to receive proceed will be local Clay County families.
Cost to enter the golf tourney is $45 per golfer, which includes lunch and cart fees.
The family is currently seeking business sponsorships at a cost of $100 each. Melissa added if businesses would like to sponsor a team, there is an additional cost of $125, creating a $55 savings per team (of four golfers).
She said prizes would be awarded to the winner of a putting contest, which will take place immediately following lunch, in addition to prizes for closest to the pin and longest drive.
First- and second-place teams will also be awarded prizes.
"God blessed us with such an amazing child," Melissa said. "We just feel this is one way to keep (Pierson's) legacy alive as well as show God's love to another family in the same situation."

We wish them the best of luck in their fundraising endeavors.... may the success of their tournaments help families immensely!!

Thursday, July 21, 2011

Bee Buzz

Sonya at Sonyarita Designs has been busy again... in addition to the previous hydranencephaly awareness merchandise she had handcrafted, she has just listed a new necklace in her Etsy shop. Remember that any of the pieces that include a crystal, can be changed to represent your little loves birthstone.

Thanks to Sonya for her amazing creativity and her hard work! Buyers remember that she donates 50% of her sales to the Brayden Alexander Global Foundation for Hydranencephaly in order to help us fulfill our mission of reaching families faced with a diagnosis of hydranencephaly all across the globe!

Monday, July 18, 2011

"Bee"-ography Monday

After a very tumultuously, nerve-wracking early surprise pregnancy, full of unknowns and impossibilities (not the usual shock and excitement), a 23-week old ultrasound confirmed a baby boy with obvious brain abnormalities. Doctors immediately advised us to terminate, something that they had nearly successfully convinced us of, until my niece was stillborn and made me realize that it is not my decision to make. Instead I was referred to a neonatologist in Columbia, Missouri, who also held little to no optimism for this baby and his little life. 

Looking back, I didn't even really receive any prenatal medical care... I drove 45-minutes for regular prenatal visits, to be told over and over that it's not to late to terminate, that the baby is suffering, and for consecutive ultrasounds simply awaiting the day that his little heart would have stopped beating.

A diagnosis was never confirmed: at first it was agenesis of the corpus callossum, then it was holoprocencephaly (HPE), then it was porencephaly... all the while it was obvious that there was severe hydrocephaly and a vaginal birth would be impossible.

A c-section was scheduled for July 5, about a week before his due date. Daddy was transitioning from boot camp for the Navy in Great Lakes, Illinois to training in Charleston, South Carolina while my two girls and I were still living in Missouri.

Fortunately, he was going to be able to come back for the delivery... one that the doctors still insisted would never happen. If it did, they advised, he would have horrible seizures, suffer from hypothermia, not be able to eat or breathe on his own. He would definitely not leave the hospital with us, we would be fortunate to meet him and share a few hours of his suffering with him. Not once was a positive word uttered in regards to his life.

Brayden Alexander, a name that was quite difficult to settle on when I was half a country away from his daddy, had much different plans. Not only did he make his debut earlier than expected, forcing daddy to rush back to Missouri on an emergency flight, but he did none of those things the doctors had anticipated. During the c-section, the surgeon lacerated my bladder... nothing worse than hearing, "OOPS," as you're lying on the operating table! As it turns out, my afterbirth experience was far worse than Brayden's was, he proved to be a fighter through it all!
In the wee morning hours after his birth, an MRI was done to establish an official diagnosis. It was obvious, due to an extremely large head circumference, that he had severe hydrocephalus. In my room, in a fog from the medications on was on because of my own recovery from two bladder repair surgeries, the doctors came in to deliver the news. Brayden did not have a brain, he would not survive much longer. I wanted more information, they gave me the printed material from the National Institute of Neurological Disease and Stroke, the first thing that came up in a Google search.

That day, Brayden left the PICU and came to my room. He was doing amazing, eating from a bottle and breathing on his own. There were no signs of seizures, he was a little cold but most babies are after birth. Aside from a very large head, he was adorable and perfect. The nurses had to make him a special hat because the typical hats would not fit. But from that moment on, aside from tests and such, he stayed with me. I read the pages the doctors gave me, over and over, and couldn't even believe it. This didn't fit, Brayden seemed fine...

After my own recovery, I was approached with the question of, "what are you going to do with Brayden when you go home?" This wasn't even an option, he was going home with us. They still were so sure that he wasn't going to live longer than a couple of weeks, that care for him would be difficult, and offered for him to stay in the hospital until his passing. There was no way I was leaving my baby to die in the cold-hearted environment of a hospital, if he was going to die he was dying with his family at home... but that scared me, so much that we stayed an extra day just to emotionally and mentally prepare! 

We established hospice care, landing the most amazing hospice nurse imaginable. Cheryl Wallace went with me to appointments, never batted a pessimistic eye, and always supported our hopes for him. That first month seemed to last an eternity, I had a catheter for my own injuries, was severely depressed, confused, and guilt-ridden... at a complete and total loss, completely helpless and hopeless.

About a month later, we were dropped from hospice upon electing to have a shunt placed. By this time, in Brayden's first month of life, his head had grown 6cm larger... when it was already large. I should reword that since the surgery was by no means an elective, we had to fight tremendously for it! The doctors, again, were so sure that Brayden would not benefit from having a shunt placed and that the risk to him in surgery was much larger. Thank goodness for my best friend, Debbie, who found an online support group FULL of amazing families who offered hope, guidance, and support. Through them, I found little Cobyn Criner (whom also had hydranencephaly) and his grandmother Regina... they became my lifeline and helped me fight to get Brayden what he needed. That shunt surgery on August 5th ultimately saved Brayden's little life, I believe wholeheartedly that he would not be here if I had let the doctors push me around. Cobyn has since then joined the angels, but his life lives on in Brayden... they share a middle name and a great amount of strength. 

Brayden became a whole new different baby after surgery, more alert and more interactive, so I knew that I had made the right decision.

The first year, absolutely the most difficult year of my life ever!! We battled doctors, switched doctors, moved half-way across the country to South Carolina, started early intervention, and started some serious research efforts. There were no answers, everything was so very unknown and that was the worst. But there were so many wonderful things that first year too! Brayden's life, was ultimately the best, and personally I overcame such huge amounts of guilt and grief, finding myself able to enjoy him. The first few months, I cried more than I probably had in my entire life... it was nonstop, over the clothes he would never wear, the things he would never do, the places he would never see.
When he was 12 weeks old, my old employer held a fundraising golf tournament for him... hearing complete strangers talk about their sincere care and concern for him, their undying messages of support and belief in his little life, made me realize that I was focusing on the wrong things. The money from that golf tournament bought me a minivan, the first time I had thought about the future for Brayden when upgrading from my tiny Toyota Corolla with all three of my kids squished in the back. I'm not sure if Jeff Carroll and Bryan Peterson really know the impact their decision had on me, their choice to include Brayden in that fundraiser... but I'll forever be grateful to them.

The battle continued, every single day was a battle. Getting people in the medical community to be optimistic, finding people who even knew what hydranencephaly was, losing friends and family who just weren't sure how to act or what to say... holidays were weird for everyone involved, I always felt like Brayden was kind of excluded only because he wasn't supposed to be and he wasn't exactly developmentally in line. Gift-giving was hard... 

That all got easier, most of those feelings were likely my own insecurities. In fact, after going against much criticism and putting Brayden's life details out for the public to share in, he had love and support from people we will never meet. Through all of the love and support, Brayden celebrated his first birthday!

Then his second birthday!!

And now even a third birthday!!

We have have been so fortunate to not have faced many obstacles. Don't get me wrong, to the average parent they may seem like devastating circumstances, but to me they're just life as we know it. After a short stint when he was about 4 months old with the antiseizure drug Phenobarbitol, for eye-flittering, it was determined that this flittering was not seizures rather weakened eye muscles which brought him his first pair of infamous spectacles to also help with a severe astigmatism.

Eating has always been a bit of an issue, mostly because the doctors were so set on him needing a feeding tube that they would not help me help him to eat. Thankfully for an amazing occupational therapist, Courtney Jerrard, we worked past those through therapy exercises and a transfer from a bottle to a cup. Now, Brayden loves his food, but not from a lack of trying to give him the nutrition and fluid intake he needs to stay healthy in the amount of food he does eat.
In July of 2010, Brayden had his first hospital stay while we were on vacation visiting our family in Missouri, prompting his diagnosis with Reactive Airway Disease. This was the hardest obstacle to face since the shunt surgery, watching him choke and not be able to breathe was gut-wrenching...his sweet smile replaced by blue lips, beyond scary! After that diagnosis, it actually took a few doctor visits to finally get the equipment at home that we needed to prevent future hospital stays. Respiratory issues remain one of his biggest problems, though we are able to wade through them much smoothly with a home nebulizer and pulse oximeter at home.

Doing extensive research on hydranencephaly is a blessing and a curse all in one. A blessing since I know what to expect, yet a curse since I also worry more than I could. Yet this research, along with the help and guidance of my "hydran-family", has helped Brayden reach the best quality of life possible in a world that wouldn't even lift a finger to help him achieve that. We joined the other little miracles in battling constipation issues, that had actually existed his entire life but went untreated and undiagnosed until he was 2 years old. His second year also brought a formal diagnosis of focal complex seizures and severe mixed spastic quadreplegia cerebral palsy. In a flurry of seizures, which proved him to be in status epilepticus in April of 2011, we also added on tonic-clonic seizures and the Lennox-Gestault diagnosis was tossed around but not written. 
His next hospital stay is a planned one, for adductor tendon release surgery on August 1st to hopefully prevent his hips from becoming completely dislocated and causing pain. Surgeries are always scary, even more so with a little life that is already teetering on the edge.

Despite all odds against him, Brayden inspires and motivates everyone who knows him to be a better person. He has friends near and far, his smile lures them in with its irresistability. He continues to have physical and occupational therapies, even starting preschool in February 2011... which was never a reality for me, to be sending him to school. 

He has explored more of US than many other 3 year olds... visiting family in Maine, Connecticut, Wisconsin, Missouri... living in Missouri, South Carolina, and Virginia. He has gone hiking up to water falls, rock climbing over streams, strolled around Washington D.C., chased his sisters around amusement parks, bathed on beaches, splashed in the ocean, spent hours watching fish in the aquariums, been in awe over blooms through botanical gardens, stumbled upon alligators in the swamp lands... he's done so much and will always do everything we do.

In between the fun, he endures doctors visits weekly, a mommy who feeds him weird things to hopefully keep him healthier (I'm all about alternative medicine and holistics over pharmaceutical/medical interventions), nasty comments and stares from ignorant people, occasional hospital stays, and manages to smile through it all. Though it is likely he is simply not aware of the difficulties he faces, he is completely aware of the love and support he has... he proves that by being a spoiled rotten momma's boy!

He also possesses the greatest amount of motivation I have ever seen in a child. Though he cannot walk, or even sit unassisted for long periods of time, that doesn't stop him from trying. 
He cannot talk, but is learning to sign "more" "eat" "drink" and some others, and will "tell" you that he doesn't like something... He communicates via a switch at school, a skill he hasn't mastered but is making obvious progress. He doesn't always see well, but he always recognizes those faces, places, and things he loves...
Every second of every day is a moment we were not supposed to share, thankfully we've been able to enjoy them together. Though his prognosis never changes, he no longer hangs on to a medically subjected expiration date. He breathes, he eats, he laughs, he loves, and ultimately he LIVES. And his little life will touch others as long as he is on earth... even well beyond, through this foundation in his honor.

There are still times when I think, "Why me?" or mostly, "Why him?" If only I'd known, if only I'd better prepared... there's guilt, there's helplessness, there's complete despair. It sounds crazy, but many years ago I thought that it was strange that all of my friends were having babies and all of those babies had been healthy, no problems,  no abnormalities, no babies dying or sick or even having a hard time... I remember then deciding that I would be the one, the mommy who would have a baby who had problems, not as if I was going to make it happen but as if I predicted it. After living years of taking advantage of my life and the ones in it, I felt I deserved what I got... like it was karma that Brayden was born with a terminal condition, my payback for being a horrible person in some way or another. Now I know that is completely untrue... myself, my family, and the other loved ones who are fortunate enough to know Brayden even a little are so very lucky. For me, he has opened my eyes to a whole new life... one where everything is a blessing and nothing is ever taken for granted. Everything is appreciated for what it is. 

There are no punishments in life, only rewards in disguise... Brayden has been my biggest one, he's made me be who I want to be... no more trying to conform or be someone I'm not... he's my little superman, he saved me and I'll save him. Even though I know I can't change things for him, I will always do everything in my power to fight for him when he can't fight anymore... whether he's still with us on earth or has joined his angel friends in heaven. No one should ever tell a parent that their child is not entitled to the best quality of life possible, no one should ever strip a parent from every ounce of hope that exists... for every other family, I hope they believe.

BEE sure to follow Brayden's continued journey & read the details of his little life on his CaringBridge site at: