Monday, October 31, 2011

Happy Halloween!!

ITS HALLOWEEN. MAKE A MOM OR DAD FEEL GOOD BY MAKING A BIG DEAL OF THEIR SPECIAL CHILD: Tonight a lot of creatures will visit your door. Be open minded. The child who is grabbing more than one piece of candy might have poor fine motor skills. The child who takes forever to pick out one piece of candy might have motor planning issues. The child who does not say trick or treat or thank you might be shy or non-verbal. The child who looks disappointed when he sees your bowl might have an allergy. The child who isn't wearing a costume at all might have SPD or autism. Be nice. Be patient. Its everyone's Halloween.

Sunday, October 30, 2011

Bee Inspired: Strength in Pain

Somehow in my late nights of Caringbridge page and blog hopping, I have stumbled upon some special kids that I've continued to follow. Many of those families I remain in constant touch with via Facebook, some of whom have become close friends. For some reason, right now, things are not going so well for most of them... so horribly, in fact, that a few are spending their last days with their families, or already have. I always have a difficult time with this. I have a hard time when I hear of anyone passing from this life on Earth, but when it's a child that has been suffering it just seems so very unfair. 

I find myself wondering if when those final days are approaching for my own 'lil man, if I'll know that they are his final days, and if I'll be as strong as these parents seem to be. Such incredible strength and fearlessness. I'm afraid I will crumble in to a million pieces...
I have this book on my bookshelf, and tonight it caught my eye. I've blogged about it before, and I now own it as opposed to just checking it out from the library...I loved it that much! It's called Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill and it's WONDERFUL. I highly encourage anyone who has an extra special child in their life, to read it and keep it close to heart.
This is the page I read tonight, and I think it was picked for me in some way or another:
"He hadn't known you couldn't enter a child's helplessness with all the skills of adulthood, and make him whole, but had to stand off with the knowledge adulthood brings, helpless, and watch the child suffer and hope that your hopes for him touched another source and returned to him as strength from the Lord." ~Larry Woiwode
Dear God, Give me the strength to be present at my child's pain. Help me to have faith in his competence. Help me to be honest with him. Help me to convey the confidence I have in him. Spare me the necessity of using force. Keep me from denying or minimizing what he is experiencing. Don't let me make my pain more important than his. Don't let me abandon him in any way because of my own fear and weakness. Don't let me be overpowered by my frustration and feelings of helplessness. Remind me that pain is survivable. Remind me that he knows I would not permit this if it were not necessary. Help me bear my suffering with strength, dignity, and honesty and so provide an example that will calm and reassure him. Remind me that my touch, my smell, my presence are all to him. Help me to stay here beside him. Amen.
May sound a bit strange, almost as if a parent would consider abandoning the situation. I know first hand, that it does overwhelm you at times. The fights to advocate, the pressure of the situation, the extra patience involved... Sometimes I feel as if perhaps I am in denial of the inevitable, but truly I know better.... know that it is just easier to stay optimistic, and enjoy every second. 

Sometimes, however, I feel like I am setting myself up for more pain, being so close and loving so much, but what other way is there? Sometimes I feel like I could run away from it all, but really I wouldn't or couldn't even if I tried! It takes a lot of strength...
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along,' You must do the thing you think you cannot do." 
~Eleanor Roosevelt

Please keep these children that are fighting, close to your heart and in your prayers...

The Buzz on Stem Cells

This topic is just too broad and ever-changing to just make a quick post! The research and advancements made in the area of stem cells is nearly impossible to keep up-to-date with!

September 23rd was Stem Cell Awareness day. I had every intention of posting some wonderful advancements in stem cells, and how they relate to hydranencephaly as well as other neurological disorders, on that day... but it just didn't happen for me. Instead I've spent a better majority of the past month catching up on the advancements and research that I have missed in the course of the past year since I first became interested in the topic.

I have previously posted on my support of stem cell research, meeting much controversy with my opinions, yet I continue to be amazed at the new advances happening daily in the world of stem cells. Now that I'm back on the blogging wagon with regular posts, expect more on this topic!

"Every family knows they are one phone call or one diagnosis away from needing what stem cell research can yield for us." 
~Speaker Nancy Pelosi, U.S. House of Representatives

That statement couldn't be more true, and I wish that everyone understood the power that stem cells possess, the power to cure millions of people with an array of debilitating conditions.

There are many sides to the ethical battle surrounding stem cells, however the truth is they are powerful healers... and without the research needed to understand these healers in a more profound way, we cannot properly utilize them in any sort of ethical way to promote great healing. Since hydranencephaly shares many of it's symptoms with the diagnosis of cerebral palsy, here is an example of what stem cells are doing for the CP community:

XCell-Center Presents Positive Results from Cerebral Palsy Stem Cell Treatment
The XCell-Center, Europe's leading stem cell therapy provider has released results from a follow-up study of 45 cerebral palsy patients treated with autologous bone marrow stem cells. Overall, 67% improved following treatment.These results support the premise that patients with cerebral palsy can be treated safely and effectively with autologous stem cell therapy.

The most common improvement reported by patients was improved hand and finger coordination that resulted in better hand use. A majority of patients reported less upper limb spasticity.

"Not long after the treatment, our son started speaking in full sentences. His fine motor skills have improved and he can now hold his fork and eat without help," said Mrs. Ritu Giacobbe, the mother of a 13 year-old boy who was treated at the XCell-Center one year ago.

Leg and foot coordination improved in nearly half of the patients. Approximately 4 in 10 had reduced lower limb spasticity. 20% were able to walk better.Speech improved in about 40% of patients. 1 in 5 showed improved cognition.

In a story published in this week's Denver Post,"Looking Up Now", the mothers of two boys recently treated at the XCell-Center, Dominic and Harrison, expressed their delight at the progress their sons have made since returning home. "For Dominic, the most significant improvement has been his ability to focus his eyes," his mom said. The Post article also quotes Harrison's mom, "Some of the milestones are significant -- Harrison can roll himself over now. He holds his head up without his chin sinking into his chest. His speech is clearer."

"These results confirm what we see in Germany on a weekly basis; that treating patients with their own stem cell yields positive results. Many of these children require less care and are now more independent. And this positively impacts the quality of life of the children and their caregivers. We couldn't be more delighted," stated Dr. Ute Tamaschke, the XCell-Center's pediatric neurosurgeon.The treatment begins by collecting a small amount bone marrow from the patient's hip via thin needle mini-puncture. The stem cells are separated from the bone marrow at the XCell-Center's EU certified cGMP laboratory, where they are counted and their vitality is confirmed. The last step consists of inserting a fine spinal needle between the patient's L4 and L5 vertebrae and injecting the stem cells into the cerebrospinal fluid which flows into the brain.

Regardless of your ethical stance on stem cells, please take the time to educate yourselves in the possibilities that exist because of this wonderful research. One day it could be the miracle cure that you, yourself will need! If not yourself, someone you my case, my son and his many friends across the globe.

Future research and regenerative medicine
By defining the properties of stem cells that regenerate complex body parts, scientists are learning how injury causes these stem cells to regenerate the missing part instead of just forming scar tissue. Future research may make it possible to apply this knowledge in new kinds of medical treatments.

Pluripotent stem cells
How similar are the pluripotent stem cells of the planarian to mammalian embryonic stem cells or induced pluripotent stem cells? By studying the planarian, maybe we will gain insight into how to control human embryonic stem cells to replace parts of our own bodies.

Tissue stem cells
Salamanders and frogs use tissue stem cells that may be much like our own, so why can they regenerate a whole limb whereas we form scars? Ongoing research indicates that regenerative animals keep a kind of map inside their adult tissues, telling cells where they are and what they should be. Parts of this map may have been lost in mammals, or perhaps our stem cells have lost the ability to read the map. Researchers hope to find out what exactly is missing or blocked in mammals, and whether such information can be restored to direct stem cells to take part in regeneration for medical applications.

Differentiated cells
Can we make adult, differentiated cells like heart muscle cells start dividing again, as in the zebrafish? It will be important to find out why mammalian heart cells lose this ability, and if it can be restored.

Saturday, October 29, 2011

Flashback Friday: All Too Familiar

The following post was originally posted in mid-October of last year. Sadly, it fits this month of this year as well. May the many angels our hydran-family has gained this month fly high & play hard amongst their friends, until we meet again.... you all live on forever in many hearts.

'My Facebook status this morning reads:

"I'm part of a group I never knew I would be a part of nor did I want to be a member, yet I couldn't live without them. I have cried with women I've never seen, over children I've never met. I am the mother of a medically fragile child..."

Sadly, those words seem to come true more often than I'd like, as I am brought to tears over the loss of a dear friend's precious girl. Despite the many obstacles she faced in her short years on earth, she touched the lives of many more people than some do in a long lifetime.

Not only does my heart break with every announcement that another little one has gained their angel wings, but the reality of what my own little man is facing hits me all over again. Another reminder to hold your loved ones close... and appreciate every smallest moment.'

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

Friday, October 28, 2011

Thoughtful Thursday: Awareness

"Let us not look back in anger or forward in fear, but around in awareness."

~♥ James Thurber

Hydranencephaly itself does not possess an assigned treatment regimen, treatment is symptomatic in that obstacles are conquered as they arise. However, most children are diagnosed with some variation of seizures at some stage in their little lives, the difficult part is determining the type and best treatment for the particular seizures endured.

Since 2009, the Child Neurology Foundation has recognized the week spanning from October 24-30 as Infantile Spasms Awareness week. Infantile Spasms (IS) often go unnoticed and untreated, thus awareness and aggressive treatment are essential in establishing a positive prognosis. These spasms occur in infancy, generally the first 4-8 months of life, and oftentimes mimic typical baby behaviors. Bending and jerking, called flexion, are displayed in the extremities or even the neck and trunk... and often occur in clusters, which become unbearable to watch as a parent. The appearance of hypsarrhythmia, essential complete chaos of brain activity, on an electroencephalogram (EEG) confirms diagnosis and distinguishes IS from other epileptic conditions.

70% of IS cases are treated symptomatically, by narrowing in on the causing factors, while the other 30% are cryptogenic without an obvious cause. The children with the latter prognosis have the best outcome with treatment, since there are no detectable brain or central nervous system abnormalities.

*the previous information was obtained from a specialized web site created by the Child Neurology Foundation in honor of IS Awareness Week: Understanding IS. You can learn more by watching the Understanding Infantile Spasms Video, just click the title link.

In honor of this week being Infantile Spasm Awareness week, our friends at Exceptional Family TV shared this video full of information on this uncommon epilepsy syndrome. The Charlans, founders of EFTV, have a son named Zak who endured IS. Click HERE for the video.

Tuesday, October 25, 2011

Snappy Comebacks

If you're a parent to a child that is less than "typical," I'm sure that you can appreciate some of these... although personally, I'm not always caught at the right time to put my skills of wit to good use, these comebacks make me smile. 

I read these as posted from Lisa Jo Rundy, a blogger at, in her article "Snappy Answers to Annoying Comments." Although her article is in response to her child living with autism, any parent to an extra special little one will likely find comfort in this list I am posting... I added my own comments in bold:

1. He can’t be autistic -- he can talk/make eye contact, smile, engage! *or in my case it is, he HAS to have a brain or he wouldn't be able to do (insert long list of achievements here)... never mind the MRI scans that clearly show otherwise, in the form of a dark blank area where his brain is generally supposed to be 

And yet, amazingly, he’s still autistic! Y’see, autism is a spectrum disorder, and that means … *though not autistic, any condition is associated with a broad range of variances... hydranencephaly included

2. Oh, she must be SO good at math! (or science or music) *I've really got nothing in comparison here, I'm pretty sure that the only assumption made in correlation with hydran is the assumption that our children are not supposed to be more than a vegetable

Actually, her great talent is in memorizing and reciting lines from Sponge Bob videos! (Or those annoying Thomas the Tank Engine songs!)

3. All he needs is more discipline, and he’ll get the message. *oh, that's the trick... more discipline?!

Yup, it’s true -- if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!

4. You poor thing, it must be so upsetting to have a child with a disability. *or the broad range of other pitiful remarks: "did you KNOW he wasn't 'normal' when you were pregnant with him?" or even better, "if he's terminal, why do you even bother to try?"

Yes, it can be hard. And pity really helps me to get through the day and feel better about myself and my child. So…thanks so much! *actually, the most upsetting part of having a child with a disability is facing insensitive comments from persons such as yourself... and what exactly would you expect me to do, have him put to sleep like an old dog?

5. Will he be able to go to college (or get married or hold down a job)? *or sit by himself or ever have a "happy" life?
Hm. Good question. By the way, has your daughter’s divorce been finalized yet? And I’m so sorry to hear that your son was recently laid off from his job… *how's things going for your kid in rehab and didn't your other kid have a mental breakdown and end up in the asylum?

6. I have a friend whose child was autistic, and she cured him! *you should take him to (insert long list of specialists I've likely already tried here) and try (insert long list of therapies/supplements/treatments here)

Wow! So I guess she’s enjoying the millions she made after figuring out how to cure autism? I bet her second home is a yacht!

7. If she can’t behave properly, you shouldn’t BRING her to the grocery store! *maybe you should leave him at home next time so we don't have to see or hear him and his non-stop yelling (which is actually his way of "talking")... or more often, "don't you have a pacifier for him?"

Wow -- that would be great. Should I fax you my grocery list, or send it by email? I’ll really enjoy the delivery service! *and could you please ask your child to not talk so loud about which cereal they do and do not like?

8. We can’t include him in typical classes, it wouldn’t be fair to the other kids. *I guess you'll be homeschooling... or more recently, "why is he going to preschool?"... or why would he be in class with regular kids when he can't do anything?

Hm, that’s an interesting perspective. So I guess you have a pretty big endowment to pay for all the law suits? That must be great! *and I wouldn't want my child's non-communicable condition to infect your child, and last time I checked he is a regular kid too... perfectly capable of interacting in a classroom environment, even if in more unconventional ways

9. We can’t accept her at our school because she doesn’t have a learning disability.*or he cannot learn at all, I thought I read he doesn't have most of his brain!?

Ohhhh… what a shame! Oh, wait, look, she’s suddenly developed dyslexia! Can she come to your school now? *and I thought you did have a brain, but you're obviously not using it so maybe you don't have one either!?

10. You should make more time for yourself! *although I value the importance of actually doing this...

You’re so right! So will you be babysitting tonight or tomorrow night? *finding a reliable sitter for a medically fragile child that you can actually relax enough to MAKE that time all about yourself is next to impossible, but thanks for the thought!

Oh the joys of parenthood... and the reality of where rude children model their behaviors from!

Monday, October 24, 2011

Diapering Wars

Brayden turned 3 years old the end of June; which, for children who cannot be on that potty train, means that insurance or Medicaid will begin to cover diapers as an incontinence necessity (just an invaluable tidbit of information if you were unaware, just get a doctor's prescription and seek out your local durable medical equipment company!). May seem minute, but as any parent knows, the budget necessary for raising even a typically developing child grows with the child. Cutting out the monthly expense of diapers helps immensely.

With this milestone, for me, came a new set of emotions which likely every parent on this journey faces. There will be no end to diaper changes, no celebrations for pottying on the big girl/boy toilet, and no rewards for a day without accidents. Some parents are able to semi-potty train with the use of handheld urinals, but even this is difficult when your child cannot sit unassisted and anything more than that is next to impossible since sitting on a toilet is out of the question with no head, neck, and/or trunk stability.

The 3-year check-up at the pediatrician proved grueling as usual, well-baby checks are the worst for special needs parents. Why parents with children who are developmentally disabled even have to be given the checklist of milestones met, let alone asked to fill it out, is beyond me (mine, for example, is always checkmarked no all the way down). Talk about a slap in the face of all the things your child "should" be doing... then asking for a prescription to be submitted for diapers and receiving from the intake nurse the question of "why is this prescription necessary?" is an additional blow. Then, just when you think you've overcome the whole diaper coverage issue, you receive a letter from your primary insurance stating that diapers will not be covered since they are considered a convenience item (according to our primary, Tricare). Thank goodness, in this case, for Medicaid for children with disabilities... don't knock it for those that need it, especially as I know many who don't and  haven't even had to fight for it as many families, including my own! Four months later, we got our first shipment of diapers... a bittersweet moment.

Thanks to our friend Terri Mauro at's Children With Special Needs Guide, the joys of never toilet training our children are realized:

Ten Good Things About Not Toilet Training Your Child
No potty? No problem!

By Terri Mauro, Guide

If your child is late with the potty training, chances are you have plenty of people trying to make you feel guilty about it. But missing that milestone's not all bad. Your child will get to it when the time is right, and in the meantime, you can celebrate these good things about remaining diaper-bound.

1. Public toileting is easier. Yeah, it's a hassle to tote the diaper gear, and find the restroom with the changing table. But think about this: Once your child is free of diapers, you will have to deal with dirty disgusting public toilet seats. And a child who wants to touch things that ought not to be touched. And put the hands in the mouth. Seriously, diaper-table confinement is a blessing to be treasured.

2. Other good fights get fought. Targeting toilet use tends to take over family life and parent-child interactions. Remove it from the stress list until your child is really really ready, and you've got so much time and effort and creativity and ingenuity available for all the other developmental milestones in jeopardy. Pick your battles, and your triumphs, too.

3. You're not diapering, you're bonding. What do you do when you're changing a diaper? Talk to your child? Sing a few numbers? Engage in some nice babble or nuzzling or nonsense? Right there, you've got some good interaction going. Your opportunities for that kind of immobilization and loving communication will not increase over time. Nothing wrong with maximizing them.

4. Pants fit better with diapers. If you have a slim-hipped little one, you know what's going to happen when all that diaper-bulk goes away? Major-league droopy-drawers, that's what. There will be time enough to deal with belts and suspenders and overalls and duct tape and whatever will be required to keep your kiddo decent. For now, appreciate the artificial hips.

5. Diaper bag = big bag of tricks. Having an adequate supply of distractions is invaluable when you're out in public with your child. But purses and pockets can't stash nearly enough to get you through a mall trip or a doctor's visit. Diaper bags, on the other hand, are just full of pockets and pouches and wide open spaces for tucking books and toys and tapes and snacks and what-all. You'll miss it when it's gone.

6. Samples are simpler. When the doctor wants to check out your child's output, scooping something out of a diaper or handing over a wet one is a lot less onerous than catching what goes into the bowl. Ew.

7. Monitoring movements is simpler, too. The more independent your child gets with toileting, the harder it will be for you to answer your pediatrician's questions about potential troubles with waste production. Whereas, when you're diapering, you certainly have detailed knowledge to share. You like to be an informed parent, don'tcha?

8. The only hands that need washing are yours. Once your child is doing his or her own duty, making sure those little hands are washed thoroughly will become an issue, and an issue of much more interest to you than to your child. You're protecting your little one from a germ-filled doom by handling the nasty stuff yourself.

9. Your bathroom stays cleaner. Speaking of hygiene -- diapers have the advantage of keeping messes fairly contained. A child doing independent toileting, not so much. Especially if you have a boy who has trouble standing still.

10. Your child gets to win one. Kids with special needs often have so little control over what happens to them. There's poking and prodding, waiting-room torture, examinations and evaluations, rules and regulations. Though your child may not be able to control what comes out when, neither can anybody else, and that's gotta feel good, you know?

So, this is a little more relevant to parents of children who may some day work on potty training... but looking to the bright side of a seemingly downside, is always a plus!! And I, for one, am thrilled to not have to clean up messes as my little man misses when taking aim at Cheerios in the toilet bowl! What are you thankful for in the diaper wars??

Wednesday, October 19, 2011

A Few Words From...

...a great friend, bumblebee mommy, and current secretary/treasurer of the foundation shared this entry with our readers today. Sadly, we have added the joining of another little one to the list of losses in just this month alone. Such devastation brings our family close together as we embrace those families in loss with our love and dedication. It also brings myself and the foundation board of directors; Heather Gibson, Angela Mason, Holly Mansfield, and Sarah Garcia to focus on where we need to be in order to achieve our mission and vision for the foundation, and in helping families to network and thrive:

It is with great sadness that I write today about the loss of another Hydranencephaly miracle child, Noah King. To compound that loss, we suffered the passing of Chase Reid as well. I have been grieving this week. As I know many of you have as well….

Not long ago, I was grieving for another long time friend who lost her beautiful daughter, Ashleigh Nevil.
Chase was 15 years old. Ashleigh was 14 years old. Noah was 10 years old.  As I have grieved and cried over these  losses, I have also been doing a lot of thinking and soul searching. Feeling the need to put my thoughts on paper, I realized that what I really wanted to do was share my thoughts…not with the world, but with my family…my Hydran Family.

So I hope you don’t mind if I take over the Foundation blog for a day as I try to express some long overdue thoughts and emotions!

I “met” Marianne Nevil, along with several other wonderful families, 10 years ago, when I joined the Hydranencephaly support group. Within a few weeks, Lisa King joined the support group, after Noah was born with Hydranencephaly. It was a wonderful thing to have the support, companionship and love of other families going through the same struggles, the same medical issues, and the same feelings of joy and awe when our precious children overcame the doctor’s dire predictions or achieved some spectacular new skill that we were told they never would (like a sweet smile, or coo, or a good poop! LOL) . I thank the Lord every day that the Rays of Sunshine website was there and that Barb Aleman cared enough about not just Kayda, her child, but other children with this devastating condition, to create a place where we could all gather to talk, laugh and cry with one another.

Over the years things morphed and changed, as things will over time. But one thing remained steady. That was the caring and love we all had for one another’s children. No matter the disagreements, differing opinions, occasional arguments among the “adults”, the love of the children remained steady. Their best interest was always at the heart of everything!

Today, as I reflect back on the last ten years (My Chrissy will be 11 years old in two months), my heart is heavy with all the losses, but filled with joy at the same time, for all the friendships formed, the accomplishments our children have made, and the progress that has been made in Hydranencephaly awareness. Ten years ago, there were only a handful of families. We grew from that core group to over a hundred families and then, when Facebook overtook the internet, and the Hydranencephaly Family to Family Resource Group was formed, we blossomed even further to over 200 families! We found new families with newborns, old families we had lost contact with, and new families who had been living with Hydranencephaly for years with no support at all, like Chase’s family and Malcolm’s family.
Wow! That is amazing when you think about it! Yahoo Groups was wonderful in its time, but Facebook brought Hydranencephaly awareness to a grander, greater scale. We have been able to enjoy more morphing and evolving in a positive way.

As of this year, we have a Foundation formed for Hydranencephaly! Not just one, but two, each with different goals and missions, but both working towards helping our children! The love of the children is what it is all about. Our families need every bit of work and support we can get. We all need to support and love one another FOR THE CHILDREN. 

I think 99% of us are doing just that. I thank God every day for all of you and count it a privilege to know you and your precious children. Some of you I have met in person, and some I have not, but all of you are special to me. All of you are part of my family.

I know for a fact that Alicia, Heather, Holly and Sarah feel the same way. That is why we joined Alicia in her quest to form a Foundation for Hydranencephaly. The mission and goal of the Foundation is to assist families, raise money for awareness and also eventually (when 501(c)3 is established and we have grown) to raise money for YOU, the families, by providing grants and help with things you need for your children. We want to have an equipment lending program, where equipment can be donated and borrowed by members, and then returned for use by another family that has need of it. We want to provide grants for children in need of specific help, we want to make the Medical community aware of our Foundation, so that when a child is born with Hydranencephaly they are immediately referred to the Foundation…..and that is just a few of the lofty goals we have for the future. If you have not read the mission and goals of the Foundation, please go to the website and read them! See if you feel you want to support this cause.

If you do, please let us know if you want to volunteer – we will be needing more and more volunteers as we work to spread awareness and give information to local communities and doctors around the world!

The work will continue. Some changes and announcements will be made soon, as we work to add services, make the Foundation a Global effort, and make it more accessible for our families. We are also committed to having our families be more involved in the Foundation work. We don’t want you to wonder what we are doing, wonder where your donations are going, or wonder who is benefiting from the work. We want you to KNOW all those things!

As we have gotten off the ground, we have been focused on getting all the legal paperwork, website organization, and basic family information packets ready to go. While awaiting news from the IRS on our 501(c)3 status (which, when approved, will make all your donations tax deductible) we are working on these basic ideas and just beginning the quest to spread awareness. We have started small, with the awareness bracelets and window clings. We have been blessed by the generous efforts of many to help us get the Foundation off the ground – from those making jewelry and donating part of the profits from it, to those volunteering their time and effort to help with logo designs, merchandise design, and informational brochure design, all the way to those who are hosting Scentsy, Tupperware and various other product parties and donating a percentage to the Foundation, on their own, out of the goodness of their hearts!

We want you all to know how much the efforts are appreciated. We want you all to know that the Foundation was created for YOUR CHILDREN, ALL of YOUR CHILDREN!

I speak for the entire Board of Directors when I say that we want to help. We want to earn your trust. We want to be there now and into the future as a valuable resource for all families with Hydranencephaly children! Please don’t be hesitant to ask questions, to volunteer, to offer suggestions, or anything else that will help the Foundation to grow and be the best it can be! Please do not hesitate to ask us anything at all regarding the work we are doing, and do not rely on the hearsay or words of other’s, especially those not directly involved in this work – we are always  more than happy to answer questions and clarify projects, etc.   We are here for YOUR FAMILIES!

I also want to add, on a personal note, that it is my hope and prayer that we adults can put aside ANY petty differences, personal personality clashes, and ill thoughts of any other adult involved in the Hydranencephaly cause, and work together with 100% co-operation FOR THE CHILDREN. Everything we do must be for them.  I still firmly believe that the Hydranencephaly Foundation, Inc and the Brayden Alexander Global Foundation for Hydranencephaly can work side by side, accomplishing many great things, each in their own way. I do NOT believe there is or should be a conflict or “competition”. I know that most of us also feel the same way!

SO, I, personally, would encourage everyone to read the mission statement and goals of BOTH organizations. Then, follow your heart and support either one, or BOTH (that’s the best optionJ). Both organizations are for the children! 

God willing, both will succeed! There has been past conflict between the two founders, yes. But it is not conflict over the kids, merely conflict over organization and naming and other personal matters. It should not overflow to the Foundations, and I don’t believe that it has. I also believe that both Kammy Tribus and Alicia Harper have the best interest of the children at heart and have just been caught in a perfectly human conflict of emotions.

It will be settled, and I believe we can all come out of this for the better, especially in regards to the work for our children! Maybe I am naïve, but I think we can all work together for the common good of our children! My prayers are for this to happen, and I hope all of you will be praying for the same!

Look for new and exciting things to happen in the near future! And be sure to share your thoughts and feedback with the Foundation, either through this Blog, on the support group, or email us individually!! 

Much love to you all! And I dedicate this entry to all our precious little ones who have joined the angels, both recently and over the years! It is for them that we should love, encourage, and support one another! 

Love, Angela Mason

Friday, October 7, 2011

Flashback Friday: Vaccinations

While many of our little loves are battling sickness in hospitals and homes across the globe, the question of preventative measures is an important one. Simply knowing that the illness exists in your community creates a higher level of anxiety to those parents of children who are easily susceptible to devastation from exposure to those germs.

Still a hot topic nearly two years after I authored this original post, vaccinations are a highly debatable decision process. My personal beliefs in whether to vaccinate or not remain the same, though I am teetering on the fence regarding the flu-vaccine after a horrible reaction in Brayden one time. He did not receive the vaccination last season, we were extremely fortunate to avoid sickness but there is no way to know if that will be the case again.

Regardless, I hope this message enlightens some to the "other" side of vaccinations, their implication on other people's children... those children who are already at a higher risk, those children who are living with a terminal diagnosis such as hydranencephaly and similarly devastating conditions.

To Vaccinate or Not to Vaccinate: That is the Question
by Alicia Harper, as previously published via "Small Portion of a Life's Journey"

Before I achieve the first ever blog post to have more than like 2 comments, let me just say that I see BOTH sides to this dilemma and the basis of this greatly heated, in many cases, debate. This is my opinion, and my opinion alone, although others may share my opinion. I am not trying to force my beliefs on any other parent trying to make this decision for their own child, however I have been asked for my views on this topic a few times. So, what better place to address this than out in the open, in the hopes of getting some feedback from other parents who are willing to share their views from where they stand? Here goes nothing:

This was always somewhat of a no-brainer to me with my older girls, who are currently 8 and 5. I had both heard and read countless accounts of the possible risks associated with vaccinations, however, in my eyes the risks of vaccinating were minimal in comparison to not vaccinating. I do, on the other hand, understand that families affected by these previously noted minimal risks don't see the risks as anything minimal... they've become a source of great devastation to their lives and the lives of their loved ones affected by these risks. Yet, I didn't think twice about vaccinating my girls.

When Brayden was born, nearly 22 months ago, there were many things that were questionable and vaccinating was one of them. The way it was presented to me initially, after his formal hydranencephaly diagnosis, was that the risks could be potentially life threatening to him under the circumstances. Although that was the reality I was facing, something in my heart of hearts told me that he would be ok... and I knew that I would not be able to live with myself if he suffered a life threatening scenario because I HADN'T chosen to vaccinate him. Instead I chose to space them out a bit, so that he wasn't receiving them all at one time.

Once I found the online support websites, and reignited that glimmer of hope in the dark that we had been sent home to, I began doing my own research. One of the first alternatives to vaccines for preventative health was through homeopathic means. There were many more alternative means I discovered as well...and I'm sure some of you all reading are better familiar than I am.

Homeopathic preventatives include a great backing of support, however there are also important notes regarding the general health of the family aside from this topic of vaccinations. For example, a mother who uses homeopathic preventatives opposed to vaccinations, likely feeds her family more healthily with a diet rich in fruits and veggies, than a mother who has no knowledge of homeopathy medicine at all. So, to that point, is it the homeopathy preventatives that are keeping her children healthy, or the healthy diet and lifestyle the family already follows? However, it is widely believed that if homeopathy practices can help a child withstand an infectious disease until around the age of 5, then their immunity level will be built up enough to avoid a life-threatening experience with disease. The biggest positive I have found, and greatest noteworthy accomplishment, when it comes to homeopathic preventatives, is that at no dosage level does it become toxic, even in long-term use.

There seems to also be greater risk associated with the combination-vaccinations, ones that are given to prevent more than one infectious disease. This risk is even greater when the little one has a compromised immune system, which is believed to be true for children with hydranencephaly and other debilitating conditions. Brayden has thankfully not proven to be compromised on that factor, however, I take extra precautions by giving him extra vitamin C and also add Echinacea to his regular regimen before immunizations to insure his levels are running on the high-end!

Also, it is common knowledge to some that the stress-level of the parent is inadvertently trickled down to the children. Keeping a stress-free home environment, and not associating immunization time with a great amount of added stress will prevent further compromising their immunity. You all know that you seem to get physically sick when you are mentally sick or worried over some problem in your life, and this is solely because of the effect of stress on your body's immunity. In this instance, it doesn't matter what supplements or even prescriptions you take, if you cannot control your stress levels, your immunity and health in general will suffer greatly!

I personally tend to take the supplement route as often as I can. When a case of the sniffles comes along, I'll spike up the garlic in his diet to help with congestion. When he's feeling a bit under the weather, I boost up the vitamin C and add Echinacea when I know the sickness is settling in. I believe in more natural approaches to medicine when able, but I am not furtively against vaccinating or other prescriptive measures. In some instances, it is necessary, and in my case it gives me peace of mind as well. Peace of mind that I am doing my part to ensure that even if my children are not greatly affected by the diseases vaccines prevent, they are not using those sharing skills I worked so hard with them on to spread it to a child who could lose their life over this encounter. I choose to vaccinate, however I generally try to avoid giving more than one at a time. I also avoid prescription meds until I know I have naturally done all I can do and the condition is not improving. That is my path I have chosen.

All that being said, bottom-line my view is this: please do SOMETHING to prevent infectious disease in your children, and in yourself for that matter. There are many people believing in the misconception that vaccination is the only way to prevent disease, when there are other means to prevention. Parents can elect to space out immunizations, especially the combo varieties that fend off more than one at a time, for instance. Also, not all infectious disease is a dire risk to otherwise healthy little ones...they can always receive the vaccination when they're older and the risks associated with the vaccine are minimal. Just because awareness of the risks is so great, especially with mercury levels and autism in the news currently, does not mean that parents should be scared to educate themselves in alternatives if they're going to avoid vaccinating.

A barrage of attacks comes from both sides of this debate, when in all actuality everyone should work together to educate and understand the alternatives to following the given vaccination calendar. However, I cannot stress enough the importance of preventative medicine in one aspect or another. If I am a mother doing all I can to prevent my own child living with complications of his own, from a potentially life-threatening disease, I want assurance that you will do all you can to ensure your child is not the child that is responsible for putting mine in a position of fighting for his life.

It just scares me beyond belief to hear some parents talk of being against vaccination, when they have no knowledge of why they are. Without that knowledge, they certainly do not have a plan of action for keeping their child healthy despite the lack of vaccinations to help. Using the current state of health over the past season as an example, the flu vaccine, how many children and adults did not receive this? Out of those persons, how many got horribly ill with flu-like symptoms? And out of those, who were actually shocked to get sick because they'd actually led a healthy lifestyle that should have prevented a sickness such as the flu? Probably not too many of those people can check every preventative measure off that checklist.

Now, how many of those people who were sick even thought twice about going out in to public? How many thought about the potential consequences of their negligence on my son, or others who are at risk of DYING from an otherwise minor case of the sniffles? Probably not one person, unless they have been touched by a child who is clinging to their life every second of every day.

Just please, rather than argue that I'm damaging my child by vaccinating, or criticizing another parent for not vaccinating, be responsible and do SOMETHING to prevent the spread of disease. Educate yourself in preventative measures for yourself and your family. I'm not asking everyone to vaccinate if you feel the risks outweigh the positives. Just know that their are alternatives to orthodox vaccination guidelines which will help in prevention, and most importantly spread of these potentially life-threatening, infectious diseases.

Wednesday, October 5, 2011

Wordless Wednesday (almost): Awareness

Available in a window cling for $4... click on the pic to be redirected to our Web site & order one, from the merchandise tab, to help raise awareness in your hometown today!

Grief or Depression

October's Party
October gave a party;
The leaves by hundreds came -
The Chestnuts, Oaks, and Maples,
And leaves of every name.
The Sunshine spread a carpet,
And everything was grand,
Miss Weather led the dancing,
Professor Wind the band.
~George Cooper

This is one of those times of year that things are most difficult. With the changing seasons comes changing temperatures, wind-guided allergens in the air, and nasty bugs to infect the health of our little ones who are already immunodeficient.

Looking at the title, let me explain that I've often been criticized for my involvement with grieving families as if I can not offer compassion and/or support to them as a parent who has never lost a child to hydranencephaly. Instead I get to relish the smiles my little man shares, enjoy his snorts and squeals, give him a squeeze when he and/or I need one, and offer cuddles of support when he's having "one of those days." Nevermind the lives who have left mine, prior to ever sharing those experiences. Rather than a sense of grief, I'm forced to recognize a sense of depression. All explanations aside, every individual on the planet faces grief, with depression, in one variety or another.
"Happiness is beneficial for the body, but it is grief that develops the powers of the mind."
~Marcel Proust

I may not be in grief and mourning the loss of one of my children, but I do indeed grieve for him. I can honestly say I no longer grieve that he was given the diagnosis of hydranencpehaly, that nasty word first heard in the hospital in a fog of emotion over 3 years ago, as I had in the past. I no longer feel guilt or wallow in the "whata, coulda, shoulda beens." But, I certainly face periods of grief that prove to be much more beneficial when truly examined and understood over excessive depression (thanks Psychology degree), as difficult as that may be. 

"Life is a series of natural and spontaneous changes. Don't resist them - that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like." 
~Lao Tzu

As previously noted, with the changing seasons comes a tidal wave of ill children. While I have been very fortunate to not have faced a bout of pneumonia, a shunt malfunction, respiratory distress, or other serious complications; I feel the sadness when others are faced with these difficult obstacles. My network of friends and acquaintances includes many families of children who live much more difficult lives, a blessing on most days but some trying days it is a heavy emotional burden. It is not merely because I have grown to love these children, but it is a dose of what my reality is now. The reality that my child will never face something as typical as an ordinary cold, his worse case hospital scenario will never be as simple as a tonsillectomy. Every day is a day beyond the prognosis, one more day to be eternally grateful for. However, every day is also another day closer to no more days... difficult to overlook during times like these.
"Reality leaves a lot to the imagination. "
John Lennon

Sadly, reality is not always prisoner to the imagination unless you allow it to be... thus, the management and understanding of grief. In my case, anticipatory grief, first shared with my by a friend of a child with a similar condition (HPE). You want to hope and believe, but those hopes and beliefs realistically include the inevitable as well:

By Beth Erickson, Ph.D.

Anticipatory grief is what happens when you know there will be a loss, but it has not yet occurred. This is what happens when a loved one is dying, and both the patient and their loved ones have time to prepare. Anticipatory grief is both the easiest and the hardest kind of grief to experience. It is marked by “stop and go” signals. With these losses, the handwriting is on the wall... but it doesn’t make coping with it easier.

Because you have time to prepare, you can begin to envision and rehearse your life without the person who is dying. This gift of time offers the opportunity to resolve any regrets you may have with or about your loved one. You can take this time to make amends with your loved one, and to tell him or her how you feel about them. Your loved one can do the same with you, and other family members. You can let go of anger or guilt. You also have the chance for delicate conversations about such sensitive topics as death, end of life wishes, and after-death preparation. You also have an opportunity to get information about your family.

One obvious drawback to anticipatory grief is witnessing your loved one’s struggle with death. As the loved one’s condition worsens, you may grieve with each downturn. You may experience feeling a sense of helplessness as your loved one fights for life. You may feel as if you are living with a pit in your stomach that won’t go away as you await death’s arrival. In addition, sometimes when people are facing death, their own fear, pain, or anger may make their personality seem to change from Dr. Jekyll to Mr. Hyde overnight or even from one moment to the next. In my own case, when cancer ravaged my mother’s brain, she became psychotic and for a time didn’t know me. This was devastating to me. Thank goodness, her behavior did not last until the end of her life, and she regained her normal personality. But for some families, the ones we love continue to have behavioral changes as they face the end of life. This can be challenging, and healthcare professionals such as hospice workers or counselors may be able to help.

Perhaps the most difficult challenge with anticipatory grief is that it is difficult to tolerate living in a state of emergency for an extended period of time. The mind can only tolerate so much angst. When a loved one is dying, the “emergency” and angst period may seem to last forever. You do not want your loved one’s death to come more quickly, yet your mind may not be able to handle any prolongation. Your mind may blank out self-protectively.

But eventually, a reminder or a new episode with the loved one sets off the grief again. Here, intense grief comes in waves alternating with times of numbness. These “stop and go” signals allow you to shut down emotionally. This insulates you before the next event occurs. Then, your grief begins anew. These flat periods can be looked at as natural, normal, and welcome respite from the agony of the loss. They do not mean you are cold or uncaring.

Anticipatory grief is normal. It is an important part of coping with a loved one’s extended illness. It prepares both you and your loved one for the end of life. Unfortunately, it may also be an emotional roller coaster. If you can expect that and understand that, you can help yourself cope with it. Don’t feel guilty about anything you may be feeling. Instead, make the best out of each moment you can spend with your loved one, and focus on the positives, such as forgiveness, settling affairs, and helping your loved one make plans for their passing.

Of course, most articles on anticipatory grief are that of adults. Only briefly have I ever found literature addressing it's existence on parents of medically involved children. But it exists, it is very real. There is so much information in the realm of adult caregivers to parents, likely since this is the "normal" progression of life: the stages of grieving, saying goodbye, peace, reminiscing, and coping during end of life care... just imagine, an entire lifetime stuck in "end of life" care. It weighs heavy... 

Fortunately the weight of life that was given, when recognized, proves to be far heavier...

"When the heart weeps for what it has lost,
the soul laughs for what it has found."
~Sufi aphorism

Monday, October 3, 2011

"Bee"-ography: Grandparents edition

Our final post in celebration of September's Grandparents Day, though a couple of days late, comes from Patricia Tribble:

My name is Patricia Tribble, known as Nana to my very first and only grand baby, Burkleigh Hazel Tribble. We found out that Burkleigh had hydranencepahly when Haley (mom) was 25 weeks along in her pregnancy on August 6th, 2009. That’s a day I’ll never forget. My son (Burky’s dad) was so upset that he asked me if it was his punishment for doing drugs. He had been clean for a year prior to finding out that he was going to be a dad. Haley had been living with us for a year and a half by this time, so I considered her my second daughter and still do. 
On September 23rd, 2009, a miracle that I so proudly call my granddaughter was delivered via C-section. Haley was 32 weeks along. Burkleigh was absolutely beautiful. She weighed in at 6 pounds 11 ounces and stretched 18 inches long. The doctors told us she probably wouldn’t live past birth, so I refused to leave the hospital. My daughter, mother in law, and I camped out in the waiting room for the first two nights terrified that the doctor’s words would become the truth. The moment when Dr. Kim Smith told us she wouldn’t make it past six months will forever be etched in my mind. I sure would like to see him now! Burkleigh never went to NICU. Haley opted for Comfort Care due to the fact that she was told Burky wouldn’t live long. After Haley recovered, we were sent home on hospice. To be honest, I don’t know what we would’ve done without our hospice nurse. She found us all the essential resources we needed for Burkleigh.
The next several months were the hardest, not so much because of Burkleigh’s health, but because of my son and Haley’s struggling relationship. 

Haley moved out and took Burkleigh with her right before the holidays. We ended up going to court and getting custody issues worked out. I’m so grateful that they included me and my husband in visitations. It’s bizarre, but my son and Haley get along better now then when they were together. Although, I would like my son to be more involved in his daughter’s life. 
Much like the other Hydran-families, we have had numerous medical challenges. Our last hospital visit was the absolute worst. We took her in because she was super fussy and extremely lethargic. Turned out that her sodium levels were really high, her heart rate was low, and she was severely dehydrated. They admitted her to the PICU where she stayed for a week. 

During that time she had quit eating by mouth, so a g-button had to be put in. After that week, she was admitted to a regular floor of the hospital where she would bounce between rooms, go through multiple tests, be diagnosed with Chicken Pox and Staphylococcal Meningitis, and have her shunt removed and replaced all within 7 weeks. The Palliative Care doctors constantly came in and told mom that Burkleigh wouldn’t make it and she should have a DNR placed. I have never heard of doctors giving up on a life, who were they to judge us? 
Thankfully, we have an awesome Neurosurgeon and Burkleigh is doing great at the moment (other than sleeping issues). When ever I have a bad day, I go visit Burkleigh and just seeing her smile when she hears my voice is priceless!

 I thank God every single day for putting Burkleigh in my life and I cherish every moment with her. We will be celebrating her 2nd birthday on the 23rd of September. We are blessed.