Thursday, September 29, 2011

Wordless Wednesday: Grandparents Edition

A day later, but just realized this morning that this did not post as planned... thanks for sharing your angel, Ailish, Tricia:

"bee"-angel, Ailish with grandma

"Bee"-ography: Grandparents edition

This grandparents edition of "Bee"-ography in wrapping up our Grandparents month-long celebration comes from Brayden's grandma-mom (as his sisters call her), Maureen:

Hi! I'm Brayden's grandma, Alicia's mom. When Alicia first told us that she was pregnant, she told us that the doctors had concerns about Brayden's ultra sound. She went on to tell us that they think he will be born without most of his brain. Of course, that took a few days to hit home, but what did that truly mean?

When Alicia and I talked, she told me the doctors wanted her to abort this child, I was so glad that Alicia chose not to, because I have always believed that God blessed certain parents to raise his special angels on earth and I knew Alicia was that special momma.

The day Brayden was born, is a day I will always remember. They ran all the tests, it seemed like days, but it wasn't, two ladies came in, one the doctor and the other a counselor, they told us that Brayden would never hear, speak, or suck on his own. Now my thoughts were how could you walk in and say this to us, when this child has been doing this for a day and a half, when I first went in to see my precious grandson he had a pacifier. I wanted to yell "have you even looked at him in person or just looked at the tests, he can do all the things you say he will never do". 

They told us to take him home and make him comfortable, what does that mean!? Give up on him, he wants to survive, he is like his momma!!! I can not imagine what Alicia and James were feeling, I know I felt lost, where do you begin to look for help or information? 

I have always said you can only take one day at a time and it will come to you. Alicia and James, even his beautiful sisters have never gave up on Brayden, and he lets them know how much he loves them with that big beautiful smile he gives them when they walk in to a room.

No child comes with a manual, we are always asking for help on how to do things, thank goodness for the internet. In the past three years I have learned so much from all of Brayden's hydran family and grateful to be included in this caring family. I am very proud of Alicia and Brayden!!!! They are working together to make life more compassionate for the next family. 

I am so blessed to sit and hold my grandson, to sit and sing to him and for him to give me that warm smile, that says "I love you too grandma"!!!!!!!!!

Tuesday, September 27, 2011

Online Researchers: BEWARE!

I, for one, do a lot of online research. Not only as the parent of a child with a rare condition or as founder of a budding nonprofit organization; but as a parent, a wife, a student... you name it, the web is the place to find the answers. 

Sometimes it clearly sucks you in with no intention of ever spitting you out (think Facebook), as the world around you keeps spinning seemingly out of control! To prevent falling prey to the endless World Wide Web of information, I have had to set aside a specific time to spend online doing my classwork, now that I am enrolled in online classes and to do miscellaneous other things of interest. If I run out of time, then it just does not happen that day. I stumbled upon this article in my online folder of blog topics and thought I'd share. Its message rings loud and clear for many of us with extra special little ones, especially...

by Joan Celebi, Ed.M., CLC
When you saw that title you probably thought this would be an article about evaluating the reliability of the information you find on the internet. Nope. Instead, I want to focus on something that's affecting many parents of children with special needs, and it's all to easy to let happen: the internet draining away your time and energy in ways you may not even realize.

We parents of children with special needs spend a lot of time researching. We want and need access to information on our children's diagnoses and disabilities. We need to stay abreast of the latest treatments, therapies, equipment, and more. Much of this research we do online. We are incredibly fortunate to be living in an age where information is readily available with just a few clicks of the mouse! However, researching on the internet can take a big toll, too. I know -- both from my own past experience and from the experiences of fellow parents of children with special needs. Beware these common pitfalls:

~Sacrificing sleep for research time. Many of us do internet research after the kids go to bed - and stay up way too late in the process. 

~Zigzag surfing. You click to read an interesting article, then click on the author's name to find out what else they've written. 

~Just then you notice an ad along the side for a medication your child's doctor mentioned -- click. A testimonial pops up, sounds intriguing, and you click to read more testimonials. One of the testimonials mentions a helpful book. Click. Pretty soon you've spent 30 minutes, an hour, or more -- and forgotten how you even arrived at where you are now!

~Allowing the online world to take the place of a real, live social life. True, you can build great friendships online. But you still need time in person with your local buddies too! 

~Posting comments on websites, blogs, or forums you never planned to visit, and probably will not visit again. Even brief comments take time and mental energy.

~Getting drawn into online conversations. They can go on far longer than you intended!

~Absorbing others' anger, desperation, and grief. While researching online, you will come across personal stories that will evoke real emotions: you'll feel furious, or outraged, or heartbroken. These stories may even bring you to tears.

Too much info can be too scary. Sometimes it's better not to know EVERYTHING the doctor knows. Too much info can be, simply, too much. How many articles do you currently have in your inbox or in piles on your desk, waiting to be read? It creates stress in your life as you chide yourself daily for not having time to read them all. There are reasons for all of the above when you're online, I know. I've been there and done that with every single bullet point above. But with online research, moderation is key - along with a healthy dose of discipline. Here are some tips to get started if you feel it's time for you to start limiting the amount of time you spend with online research.

1. Set a specific time when the computer simply must be turned off. My own limit is 10:30. Earlier would be even better but ... I'm working on it! Designate certain nights as computer-free nights.

2. On a sticky note, write the topic you want to research. Stick it to the top or side of your computer screen as a reminder to stay on track. And remember, zigzag internet surfing gets worse the more tired you are (re-read #1).

3. If you're online a lot, make a point of getting out with friends at least once a month, preferably more. And instead of emailing friends, call them if possible - even if it's just a quick hello or question. There's a lot to be said for the sound of actual friendly voices!

4. If you feel the urge to post a comment, ask yourself these questions: "Am I willing to spend the time to respond to replies to my comment? Is this directly related to the topic I'm researching? How likely am I to come back to this website in the near future?" Even brief comments take thought and precious minutes to write, so guard your time and your mental energy carefully! 

5. Post wisely. Connecting online with fellow moms and dads of children with special needs is a wonderful way to get and give friendship, support, strength, and information. I highly recommend it as a way to combat the isolation many of us experience as special needs parents. However: choose your online conversations carefully. As much as we would like to, there simply aren't enough hours in the day to participate in every forum or list serve we want to. And keep your posts succinct. Longer conversations can take place by phone. 

6. You don't have to read every heartwrenching story you find! As a parent, you feel the authors' stress, fear, and even trauma -- sometimes almost as strongly as if their children were your own. Protect your emotional energy and well being by limiting how many of these kinds of stories you read each day or each week.

7. If you're researching medical information, you need a strong stomach and a thick skin. The abundance of medical information online is a two-sided coin. On the one hand, it's a blessing to have so much information at our fingertips which used to be largely inaccessible to the average person. However, is it too much information for you? You can end up terrified and ill over obscure facts, yet-to-be proven theories, surgical details, uncommon side effects, rare complications that likely don't even apply to your child. Be aware of your tolerance levels, and allow yourself permission to click away if it's getting to be too much. 

8. Ask for recommended resources from your child's teachers, therapists, doctors -- anyone who works with your son or daughter professionally. Often, these professionals have excellent books, websites, and articles they can either suggest or hand to you right then and there. This will save you the time and frustration of trying to find resources on your own.

So ... if you've been spending a lot of time on internet research lately, take a break. Turn your focus to other things. Get some sleep. All that information will still be there when you need it. And then some.

Great advice! However, I still believe that the more knowledge you possess, the more empowered you will feel. There is a point, especially when your child is living with a very rare condition deemed terminal, that you must know more than most of the doctors. These are the cases when that overload of computer-generated information can come in handy. The most important thing I've learned, is to be sure that I am taking care of myself... if I'm not good, nothing else is going to be good either! *easier said than done!!

Sunday, September 25, 2011

"Bee"-ography: Grandparents edition

To wrap up the month of September and our celebration of grandparents day, which was officially on September 11, this "bee"-ography comes from Dawn, gee to Haydin:

My Grandson, Haydin is the most important person in my life. He is my hero, my reason for living and is the light of my life. He and my daughter Haylee live with me so I am fortunate to be with him everyday. We didn't get his diagnosis until he was almost 3 months old. My daughter didn't find out she was pregnant until she was already 6 months along. I was nervous and made sure that the OB/GYN did an ultrasound often. She told me that if she thought there was a problem she would tell me. I listened to his heartbeat strong and steady. From the first time I heard it I was wrapped around his little finger. 
Haydin was born on 3/23/2009 @ 6:22 am. His head was so small and he was so tiny and perfect. The nurses thought he had a lactose allergy so when we got him home and to his first doctor appointment we got him on a soy formula. That seemed to help w/ his fussiness but didn't eliminate it. Through this Haylee finished her Junior year of highschool and was looking forward to a summer of taking care of her son, working and getting ready for Senior year. 

The colic continued so another doctor appointment. Over his first 2 1/2 months the doctor noted his head circumference was increasing. I told her it was a family trait and not to be concerned. Just to be safe she scheduled him for an ultra sound she thought maybe hydrocephalus but I knew I was right. So on June 18, 2009 we went to our local Nationwide Children's Close to Home Center for the ultrasound of Haydin's skull. The tech looked concerned and went to get the doctor. He told us he saw a lot of fluid and wanted us to go to the main hospital downtown to get a CT to get a better look at his brain. He took me out of the room and was explaining as we walked down the hall then he said "I don't know how much brain damage there is. We have to get a better look." I was in shock what the hell was he talking about? He told us they would be waiting for us and would get him in as soon as we got there. Sure enough we got there and in minutes we were watching Haydin get strapped to the board and the CT was done. When we left the room a Resident that worked w/ the Head of Neurosurgery was walking toward Haydin, Haylee, Haydin's dad and I. We were told Haydin was being admitted and that a shunt would be surgically implanted the next day. Ok this is no big deal. We get admitted my daughter goes home to get some things to stay at the hospital w/ her son. Haydin's Dad and I stayed at the hospital and would await her return w/ his family. A little while later the head of the Neurosurgery department comes in to talk to me and Haydin's dad. He says this word I'd never heard of before, Hydranencephaly. He said Haydin would never walk, crawl, talk, know us, know what was going on around him, doesn't feel pain doesn't anything he's a vegetable don't get attached. Then had the gall to ask if I had any questions. All I could think was you SOB I AM attached. I didn't know what to say or ask I just told him he had come in punched me in the stomach, reached in my chest ripped my heart out, stomped it on the floor and threw it out the window then ran over it with his car. He'd need to give me a minute to process. Then he hit me with the blindside punch. "He won't live to be a year old." he said. Then said how sorry he was and left the room w/ his residents, students and such. I had to tell my daughter and the rest of the family. I blamed myself. I don't know why I just knew God was punishing my Grandson and Daughter for something I had done. I knew it wasn't true but as a Mom/Grandma I take everything onto myself. 

I went home that night and looked on line I found the Rays of Sunshine site and what a help that was. I wasn't alone! Haylee wasn't alone! Haydin wasn't alone! There was somewhere to go to. People to ask questions and get advise from. 

His shunt was placed and our nonstop appointments w/ specialists I never thought I'd be working with started. We saw so many doctors so many offices so many specialist and I was there for everyone of the them. I HAD to know what was going on. What I could do. What I could do to help my daughter get through this and be the best mom she could be to a special needs child. I am so thankful that we have a team of doctors that hasn't given up on him. We went to doctor appointments it seemed 1 or 2 a week. 

The next thing I knew Haydin was turning 1 and our appointments were slowing down to every 6 months. He was in PT/OT. biannual visits to the CP clinic, going to the Developmentally Disabled school 2 days a week and we had Help Me Grow. He had had 1 ear infection and a few colds but nothing major. Wow this was getting easy. He wasn't rolling over but he was making sounds and he definitely knew Mommy and me. He sometimes says Ma for his mommy and Gee for me. I love that. I also love coming home from work and getting a huge smile of acknowledgement from him. He gets bigger, stronger and he's on the weight chart! He loves to stand with help. He's letting us know what toys he likes and what ones he doesn't. Then it's almost his second birthday. The Neurosurgeon isn't nearly as doom and gloom as originally. CP clinic helps us by giving us Rx's for a medical stroller and a stander. We get the medical stroller but are fighting w/ insurance for the stander. He had his first bout of Bronchitis in the early spring but didn't need to be hospitalized. Haydin had to have abductor & inflexor surgery this past spring and came through that like a champ. I'm afraid to jinx it but over all he's healthy. 

In June I became his home health aide. His mom will graduate from Dental Assisting school this month and we are so proud of her. We have stopped only living in the "now" we actually make plans and look ahead to birthdays and vacations. We don't worry about the what if's we just go on about life and include Haydin in the most mundane things as a trip to the grocery store to the most grandiose as him being in his auntie's wedding. We don't worry about the people who weren't strong enough to stay in our lives we cherish the ones that looked beyond the diagnosis and prognosis and love us and him more. 

Haydin loves to be outside, he loves his pool and loves to be around people. He loves the zoo and walks in the park or across the dam. He knows he is the center of the universe. He plays w/ switch toys he activates w/ his head. He loves food. He's not picky he will eat whatever we feed him but somethings go down easier than others. He has sleeping issues but is the happiest non sleeping person ever. He rarely cries, always smiles and laughes. When he started school last week everyone knew him, came to see him and comment on how big he's getting and how healthy he looks. It makes me proud b/c that's all his mommy's doing. She has never given up on him never questioned why and never thought twice. She's stronger than parents twice her age and wise beyond her 19 years. We are so thankful for our family and friends for their love and support. We cherished our extended Hydran family and thank them for their support and compassion. 


I am so thankful to have Haydin as my Grandson. He has given me faith, perspective and meaning. All I can give him is love.

Friday, September 23, 2011

Flashback Friday

First, I'd like to apologize for my absence... our recent move was not nearly as organized as I had hoped. Needless to say, our mission for our foundation still exists and myself, as well as the Board of Directors and associated Research & Marketing Committees are back in full swing. Be prepared for exciting announcements, great amounts of progress, and daily blog posts along with regular advancements to our foundation site & informational site...

This post, again, is from the first blog I authored upon starting this journey with hydranencephaly, "Small Portion of a Life's Journey" Enjoy:

Some Mommies Get Babies with Something More
By Ali Harper, first posted in June 2009

A "new friend" who just happens to live fairly close to us in Myrtle Beach, posted this at her blog a while back. I loved it so much that I saved it to read over again. Carly has twin girls, one of which has holoprosencephaly (HPE). Holoprosencephaly, I believe, is what the doctors thought Brayden had before he was born. It is a condition where the brain does not grow forward and divide as it should during the early stages of pregnancy. Just like hydranencephaly, there are varying degress of HPE...basically the conditions are very similar in prognosis and treatment. Fortunately, her daughter is doing very well...
Here is the post that I stole from her previous mentioned blog (which she, in turn, stole from the Families for HoPE Facebook page), and I hope all of the mommies with extra special little ones enjoy as much as I:

By Lori Borgman, Columnist & Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. 

Mothers lie. Truth be told, every mother wants a whole lot more. 

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose,beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want. 

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. 

It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? 

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. 

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. 

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Sunday, September 11, 2011

Bee Inspired: National Grandparents Day 2011

Grandparents day is a true holiday, not one that is simply manufactured by greeting card companies. As you've likely read in previous posts, we are honoring our grandparents the entire month of September... but today, especially, on Grandparents Day.

In 1979, then President Jimmy Carter officially signed the proclamation creating National Grandparents Day to recognize the 17 million grandparents in our nation at that time. That number has grown to approximately 70 million in the United States alone. In that original proclamation, Carter wrote that because grandparents "are usually free to love and guide and befriend the young without having to take daily responsibility for the, they can often reach out past pride and fear of failure and close the space between generations."

Whether they're grammies, grannies, meemaws, papas, or various other traditional or trendy name for the grandparents in your life; I hope you were able to recognize them for the wonderful part of your life they play!

"A Grandmother is a safe haven."
~Suzette Haden Elgin

"Grandparents, like heroes, are as necessary to a child's growth as vitamins."
~Joyce Allston

"A grandfather is someone with silver in his hair and gold in his heart."
~Author Unknown

        "You are the sun, grandma, you are the sun in my life."
~Kitty Tsui

"When it seems the world can’t understand, your grandmother’s there to hold your hand."
~Joyce K. Allen Logan

"Sometimes our grandmas and grandpas are like grand-angels."
~Lexie Saige

     "Grandma and Grandpa, tell me a story and snuggle me with your love. When I'm in your arms, the world seems small and we're blessed by the heavens above."
~Laura Spiess

"Perfect love sometimes does not come until grandchildren are born."
~Welsh Proverb

"God gave us loving grandchildren as a reward for all our random acts of kindness."
~Janet Lanese
"Nobody can do for little children what grandparents do. Grandparents sort of sprinkle stardust over the lives of little children."

~Alex Haley

Friday, September 9, 2011

Flashback Friday: Life with Mr. Rogers

The following post was originally written, exactly two years ago, shared via my original blog, "Small Portion of a Life's Journey". The ages of my own children have changed... milestones have been reached & obstacles overcome... but the sentiment remains the same.

This Message Has Been Brought to You by: Mr. Roger's Neighborhood

As a child, I watched Mr. Roger's Neighborhood, as did most all children of my generation did... and I'm sure that many children still continue to do so. I remember thinking that he was only talking to me as he put on his shoes and his sweater to greet me for the day. My kids now don't find much entertainment in his calm-mannered, quiet ways of explaining life lessons. I never thought I'd find a sense of peace with Mr. Rogers again in my entire lifetime, he was an iconic treasure of my childhood whom I left behind at the age of maybe 8 or so. However, some time ago I stumbled upon this quote which lead me to search for more, of course:

"No child is 'perfectly' whole in mind, body, spirit, ability...nor can any child meet all of a parent's hopes and expectations. yet there is a wholeness of each and every child, a wholeness that is unique and brings with it a unique set of possibilities and limitations, a unique set of opportunities for fulfillment."
 ~Fred Rogers

Every parent likes to think their child is perfect, they strive to help their child meet milestones that others are meeting or they shove their child along a path against their will to live up to others' expectations of them. As a parent, this is what we should do to help teach and guide our children in the direction that will help them to achieve the best quality of life possible. I love to think that now that I am a parent to an exceptionally special child, I appreciate more of the little things than most parents probably do. I let my kids choose their own direction and try to guide them along rather than shoving them the way I want them to go or the way that others think they should go.

But, as most all parents, I ultimately want my kids to be the best kids of the bunch. I love to hear how sweet my girls are, it makes their whining and temper-tantrums at home more tolerable because they act the way they should in public. I am proud when they are complimented on their manners, even if I have to give them the discreet evil eye to remind them of the manners they like to push aside when they're in the moment of putting them to good use. I love to hear what they excel at, and even the things they don't, because it enlightens me more as to their interests. My girls know that I am proud of them as long as they are doing their best, even if it's not as good as someone else's best.

"It would have been sad for me to spend my life just trying to superimpose stuff on people rather than trying to encourage them to look within themselves for what's of value." 
~Fred Rogers

Some parents, however, seem to be the most judgmental and harsh critics of other people's children, and I can't imagine how they are with their own children who themselves can't possibly be crammed in to a mold of perfection. I find that I am becoming increasingly more aware of this as my kids get older and I find myself having more little people around. Let's just say that some importance should be stressed on the fact that parents should think before they speak in front of their child because that child will always repeat what they say with great beaming pride, because their mommy or daddy said it first. More often than not, these seemingly "facts" gathered by children are no more than "ignorance" passed from parent to child, along with critical thinking and a sense of dislike for others that are not "perfect".

I must also say that I absolutely despise the most when another parent asks how old one of my kids are, and then asks if they can do __________ (enter random milestone here). Afterwards the plug-ins of theories, advice, and unintentional criticism of your own parenting skills are discussed.

With my girls, who are now 7 and 4, they both reached milestones at a fairly typical rate. My 7 year old didn't like to read, or even be read to. It took her a little longer to develop an interest in books and the patience to sit still that is required. My 4 year old daughter has received speech therapy since she was 3 for a mild speech impairment, and I barely noticed that she had a problem. I spoke her language, and so did her sister so we rarely had a communication problem. I tried to repeat words that she would noticeably mispronounce correctly without criticizing her for not being capable of saying "s" or "f". She speaks so much clearer now, but it would kill me when other mothers would tell me what her problem probably was, or immediately boast that their own child has perfect pronunciation and grammatical skills at the age of 4. I shrugged it off, and still do... only to have those feelings amplified by about a million when it comes to experiences with my son.

"Confronting our feelings and giving them appropriate expression always takes strength, not weakness. It takes strength to acknowledge our anger, and sometimes more strength yet to curb the aggressive urges anger may bring and to channel them in to nonviolent outlets. It takes strength to face our sadness and to grieve and to let our grief and our anger flow in tears when they need to. it takes strength to talk about our feelings and to reach out for help and comfort when we need it" 
~Fred Rogers

Strength and searching for nonviolent outlets for anger... I've mentioned in other posts how it feels to be around "typically" developing children that are my son's age, I would be lying if I said that it was not a little disheartening to watch them run and play, and even talk a little. It gets even moreso difficult as each day goes by. That's a personal issue within, not one that is imposed by others, because I'm overly appreciative of every little thing he can do that he's not supposed to do. He does have his own set of milestones, and he'll reach them when he's darn good and ready to. The feelings that I felt when I felt attacked by my daughter's lack of formal pronunciation at the ripe old age of 3, only were exaggerated in recent months. 

Why is it nearly always mommies that are guilty of this? Is there a mentality that goes along with having "perfectly" healthy children who are reaching their milestones according to the textbooks? If your children do not accomplish this feat, then you're not part of the club...

"How old is your baby?"

That's the question that always fuels the fire. While I can take great pride in saying that he is 16 months and 19 days old, not everyone can share in the joyous celebration of every day counted that he defies the odds given to him. Not everyone knows the sincere obstacles that are indeed in his way, but even if they do have a sense or know a little of his story... we still get "the look". The second that I answer I get "the look". 

Unless you have a child who is obviously developmentally delayed, you don't know about this "the look". A friend and I were talking, or rather emailing, about "the look". There are many definitions for this in people's lives...but as a mommy to an extra special little one, here is the definition of "the look" on our terms.

"The Look" is the mask that disguises the thoughts of sadness, sympathy, pity, questioning, doubts, or any other thoughts that the person has about your child. Whether this mask is put on at first glance, upon interaction, or just upon learning that your child is actually older than they look or perform. "The Look" is hiding what the person wants to say about that glimmer of optimism you have vocalized your excitement about. They can't understand why you would be excited that your child can do something as simple as move their tongue from one side of their mouth to the other. There is no party needed to celebrate the fact that your child just bit his own hand. 

"The Look" disguises that fact that they feel you are in denial of what your child is actually capable of and that they think your hope has created your child's ability to complete a task they clearly should not be able to. As if something as simple as a parent's will can make a child do something they're incapable of, apparently I'm crazy. They feel sorry for your unfortunate circumstances, they are sad that you face daily struggles, and most often "the look" is given at the moment that there is a great loss for words.

And I would much rather get just "the look" than hear "oh!" along with the occasional, "he is precious/sweet/a blessing" paired with it...

Because, once you pair them together it's an even bigger stab in the eye. As if there was nothing at all they could compliment your child on, but to say "oh!" or go very far beyond an assumption that is true about most children by saying precious/sweet/a blessing along with it to hopefully counteract the blow of "OH!"

"If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never even dream of. There is something of yourself that you leave at every meeting with another person."
~Fred Rogers

I thought "the look" was a myth upon hearing about it before until I personally witnessed it. And if that isn't enough to convince you, seconds ago I just flipped on the TV to The View and they were talking about "the look". It was given on different terms, in terms of racial reactions, but still hurtful, judgmental, criticizing, and wrong just the same. *and if it's talked about on The View, let me just's FACT :)

So, why can we just not accept each child as an individual? Why is there this preconceived list of things that every child must live up to to be deemed as complete and whole? I understand there are milestones in development that must be met, but why must they be so strict and leave little room for freedom to relieve some of the pressure. But, most importantly why must judgment be placed upon the innocent little ones who may never reach those milestones or the parents who are already struggling themselves to accept the fact that these parts of the traditional baby book will never be filled in?

If only everyone could have grown up with the wisdom of Mr. Rogers...

"When I say it's you I like, I'm talking about that part of you that knows that life is far more than anything you can ever see or hear or touch. That deep part of you that allows you to stand up for those things without which humankind cannot survive. Love that conquers hate, peace that rises triumphant over war, and justice that proves much more powerful than greed." 
~Fred Rogers

Thursday, September 8, 2011

"Bee"-ography: Grandparents edition

Thanks to Betsy, Malcolm's grandmother, for her contribution to our blog honoring the grandparents in the lives of our little bees:

Malcolm, now 21, came into our lives when he was two, a cheerful happy boy. We had moved to Austria so didn't see a lot of him but Jenny brought him to see us. What joy as he giggled and giggled and caused many others to smile
and laugh. We always said that Malcolm and God shared jokes together!

A few years later he came officially into our family. We've seen him go through a variety of medical things, always showing us his patient side. It's hard to separate out who he is from the bonding that he has with his mother and siblings (4 of them).

As grandparents we are proud to let the world see how special he is to us. His communication skills are mostly through smiles, laughs, an attentive look when we sing or speak in certain ways.

We will always be thankful that Jen opened our hearts to a bigger world than we had ever known.

Jenny, has always had a heart for people with special needs.
So, it didn't surprise us when her day care (JennyBeans) had a number of children with a variety of challenges. We watched her give herself equally to all the children.treating all as 'normal'. We learned from her that each one, created by a loving God, has unique things to offer and when we look for that, we grow and are expanded in our love and care..we not only give but receive more.

"He who can reach a child's heart can reach the worlds heart."

~Rudyard Kipling

Wednesday, September 7, 2011

Tuesday, September 6, 2011

Where are the Parents?

School started today, for everyone in our area at least. This routine, though chaotic to most, is my comfort.... summers and their disorganization completely stress me out! Filling out paper after paper, about joining the PTA and volunteer opportunities reminded me of this article that I originally read in a MUMS (a national parent to parent network) newsletter. It's literally an exhausting task trying to explain why you can't do more, or be more involved... though I would LOVE to be and am as much as I am able. Sue's essay absolutely says it all the best:

Where Are the Parents?
By Sue Stuyvesant, Parent

Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue, sadly, passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.

Monday, September 5, 2011

"Bee"-ography: Grandparents edition

On Sunday September 11, the US will celebrate Grandparents Day. While it may be true that this is a celebration created by the greeting card companies to fill the void that exists in the month of September, we at Brayden Alexander Global Foundation for Hydranencephaly will be celebrating grandparents for the entire month, since they need all the celebration they can get!!

"Grandmas hold our tiny hands for just a little while, but our hearts forever."

~Author Unknown

Our first celebratory story comes from grandmother to angel Nevaeh, Linda:

Nevaeh Hope was born on July 28,2010 She weighed 3lbs 12Oz. She looked perfect in every way. She had ten toes, ten fingers and she was beautiful. The hard part was what I was seeing and what they took us the dx was did not make sense. They told us she had hydranencephaly that she only had a small part of her brain stem. I did not believe them. I told them "run the test again . THAT IT WAS A MISTAKE." It wasn't.. so Nevaeh came home. 

She was surround by love 24 hours a day. feeding her was a task as it would take 45mins to a hour to feed her 15cc .. but I didn't care how long it took. Every morning we would watch the sun rise, because it was a new day of hope, one more day that she survived. The doctors came to the house and hospice was involved they were trying to prepare me for what was done the road but I was deaf. I was determine to have Nevaeh live.

Then on the July 24 she stopped eating and she was having seize rs. Her little heart would stop seven to eight times a day , then she would jump start her heart back up. So every time we thought we lost her she would come back. She was surround by love, someone was with her 24 hours a day. I would rock her and sing all the songs a baby should hear. Then on July 28,2010 after we watch the sunrise and as I was rocking her I whispered in her ear " I love you and it was OK to go." she died in my arms that morning. It was the first time I have ever lied to any of my grandchildren.

Nevaeh taught me how short life can be and sometimes how unfair it is. All the should have and could have mean nothing. As it will change nothing. My Angel is in Heaven and I am here missing her. There is a hole in my heart and a sadness in my eyes. That I am told time will heal.
"If love could have saved her, she would have lived forever."

Un-Bee-Lievable Fundraiser

Last month I shared with you our latest, on-going fundraiser sponsored by Scentsy. In case you missed it, our friend and Independent Distributor Jessica, so graciously established a party which will donate 25% of it's sales to Brayden Alexander Global Foundation for Hydranencephaly

If you've never heard of Scentsy, you're missing out on an amazing product... which only continues to offer more wonderful options for sharing their amazing scents.

New in September:

~Solid Perfume, currently offering 5 fine fragrances like "Love Story" and "My Wish"

~New warmer designs and fresh, new scents; in this month's featured products

~the month's featured warmer and scent of the month: PUMPKIN MARSHMALLOW *yum!

~many new close-out specials

...and my personal favorite: Sasha!

For $30, you get this ADORABLE bear and a Scent Pak to keep inside and bring your Scent Buddy to life with a favorite comforting scent. The best part is that 100% of the net proceeds from this bear is donated to Ronald McDonald House Charities, with 25% still being donated to our foundation from our friend Jessica. Helping two invaluable charities with one purchase, and an adorable... perfect for gift-giving... purchase at that! :)

In case you're not familiar with the amazing (and I have extensive personal experience) work that Ronald McDonald House Charities does, here is more info on their cause:


The mission of Ronald McDonald House Charities (RMHC) is to create, find and support programs that directly improve the health and well being of children. Guiding us in our mission are our core values:

  • Focusing on the critical needs of children.
  • Celebrating the diversity of the programs we offer and the staff, volunteers and donors who make them possible.
  • Staying true to our heritage of 36 years of responsible stewardship.
  • Operating with accountability and transparency.

We believe that when you change a child’s life, you change a family’s, which can change a community, and ultimately the world.

We strive to be part of that change and part of the solution in improving the lives of children and their families by providing programs that strengthen families during their most difficult or challenging times. We extend our reach and impact by leveraging our 36 years of experience and strong relationships with local communities and people in the field to continually establish Chapters across the globe. 

We continually work to improve and expand our core programs, while also developing new services to address the unique needs of the communities we serve.
We don’t do it alone. We rely on our Chapters to identify needs and carry out our mission on the ground. We rely on our strong relationships with the medical community to provide access to health care. We rely on strategic alliances with organizations that have the knowledge and infrastructure to extend our reach. We rely on you – our donors, volunteers, staff and friends.
Putting It into Action
RMHC makes an immediate, positive impact on children’s lives through our global network of Chapters in 52 countries and regions and through our three core programs: 

We award grants to other nonprofit organizations that align with our mission to positively impact the health and well being of children.
We are also committed to education. Local Chapters award thousands of scholarships each year through RMHC U.S. Scholarships to students entering college across the United States.

Relationship with Medical Community

To help improve the health and well being of children around the world, we rely on strong partnerships with the medical community.

These relationships have been nurtured and have grown over our 36-year history. And because of these relationships, we can bridge access to health care for people through:
  • One or more of our three core programs in 73 percent of the best children’s hospitals in the world.
  • Local clinic service providers who partner with Ronald McDonald Care Mobiles in their area.
  • Grants to other non-profit organizations that also serve children.

Medical professionals contribute to RMHC in a variety of different ways:
  • They are actively engaged as members of the RMHC Global and local boards of directors.
  • They provide land for Ronald McDonald Houses, spaces within hospitals for Family Rooms.
  • They assist with operating costs and donations of in-kind services. 
  • They volunteer their time and services on Ronald McDonald Care Mobiles and with other programs.

This critical support enables us to expand our program capacity and help change children’s lives around the world.

Because of our relationships with the medical community, we can help eliminate many of the barriers that prevent families of ill and injured children from getting the care their children need.

Sunday, September 4, 2011

Shareworthy Product

Recently I was asked to share about Caroline's Cart, and since I am not one of those super-mommies that can push a wheelchair and pull a shopping cart with grace... I didn't hesitate to agree! (*be sure to stop the music player at the bottom of our blog before viewing the video)

"Our Mission is to make Caroline’s Cart available to retailers everywhere, providing a quality product for special needs children that further enables their participation in mainstream society with their family through the common activity of grocery shopping."

"Our Vision as the creators of Caroline’s Cart, is for it to be recognized as the preeminent shopping cart for special needs children in the U.S. and beyond. We hope that one day all retailers will provide an equal opportunity shopping experience for parents and caregivers of special needs children by furnishing them the option of a Caroline’s Cart. All families deserve to have this option, so they can enjoy the freedom of shopping with their special needs child."

The census bureau reports that 1.6 million children between the ages of 6 and 14 have a disability that severely limits their mobility. Those children have parents who would love to include them in everything, even the  most mundane task of grocery shopping. And since these carts can also accommodate adults, imagine the use beyond the population of disabled children... elderly with mobility issues, prevent wandering an ensure safety of autistic children or those with dementia, etc.

I know you'll agree that this would be an amazing thing to walk in to any store and find, so please help spread the word about Caroline's Cart to demonstrate the demand for these in your local stores! 

You can learn more about the product at:

Saturday, September 3, 2011

Bee Buzz: Summer Fun Photo Contest Winner Announced!!

For the past six weeks, via our foundation's page on Facebook, we have been running a summer fun photo contest. On September 1st, the winner, who was voted upon by "like" clicks to her picture, was announced as Sunbathing Gabby!

 Gabby Jane is now the face of our Facebook page for the month of September while her mommy, Jennifer, was awarded with a Scentsy warmer with scents (which she asked to be delivered as a gift), and a $50 gift card to which she graciously donated back to the Brayden Alexander Global Foundation for Hydranencephaly.

Thank you, Jennifer, for your donation and the support you have offered our foundation.

Congratulations Miss Gabby, although you dance amongst the angels now... your beauty lives on in the lives of many. We love you...

"Death leaves a heartache no one can heal, love leaves a memory no one can steal."
~Irish Tombstone 

Friday, September 2, 2011

BUZZ: New Awareness Merchandise!

Our foundation's board and committees have been busy, busy bees!! We now have a new piece of awareness merchandise available for purchase on our Web site:

Our vinyl window clings are 5x5 and easy to apply, remove, and reapply again :) For only $4/pc they're an amazing way to raise awareness for our little bees!

And in case you're wondering where the money earned from awareness merchandise and donations is utilized, these are only a few of the expenses we are able to cover:

~domain/web site maintenance

~awareness merchandise production
     ~silicone bracelets

     ~window clings
     ~tees, bags, water bottles, Christmas cards, and much               more in production!

~Awareness/Education packets in production for distribution to care providers and medical communities

~informational flyers for distribution 

~nonprofit management/application fees

~trademark applications for our logo & name

~and much, much more working behind the scenes

Once we have obtained official 501c3 nonprofit status from the IRS, which is due no later than December (but seems like a FOREVER wait):

~we will have access to grants which will allow us to reach more families through reward of equipment/therapy grants to families in need of assistance

~provide greater advocacy services to families across the globe, with translation services to families in other countries

~work to promote our foundation's mission to a national awareness level, with the hopes of achieving a day or month of awareness 

~provide for families on an "as needed" basis, whether they need assistance in finding resources, respite care, or even adoption and other alternative care services to children born to families who are not prepared for extreme medical care conditions

~make our presence greater in the medical communities, changing the misconceptions that exist regarding our children being hopeless and bearing of a condition that is "incompatible with life"

~reaching out to achieve medical, therapeutic, and various other professionals to our board of directors
~achieving a greater media presence, to expand beyond the internet and find our space in television, radio, and print media

~plus much, much more!!


Through the Brayden Alexander Global Foundation for Hydranencephaly, a greater passion will be shared as families are networked across the globe to ensure every child given this diagnosis has the opportunity to live and thrive in the quality of life they deserve. Families will be offered support, information, guidance, and resources. Through education and awareness campaigns, the medical community will become enlightened to the possibilities that exist for these children and the world will learn to accept this condition as simply an obstacle in the lives of these little miracles.


Though a budding foundation, the efforts have the potential to change the lives of thousands of families across the globe; many already involved with the cause. Grants will be awarded for assistance with therapeutic services, equipment, medical costs, and other financial responsibilities of caring for these children. Information for adoption and designated care to insure families are not overwhelmed by the amount of involvement required in caring for these children will also be shared. Awareness campaigns and merchandise to create recognition of the cause and what this condition is will be made available. The foundation will be guided by individual family needs as it grows. The ultimate goal is not to cure, simply to insure these little lives are allowed to shine.

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." 

~Margaret Mead