Thursday, October 30, 2014

Two days

We are in the final days of Gavin's fundraiser. I wanted to tell you a little bit about a normal day with Gavin and how the spina bifida association helps him and will continue to help him throughout his life which is why it's so important to us to raise money. 

I think that a lot of people see Gavin and have zero idea of what we deal with on the daily basis. I think we shelter the world from what a day with Gavin is like, I'm not sure if we are sheltering you or him but either way it's important to know a little about what our life is like. This isn't for pity, we are so blessed and have the best case of a worse case scenario, this is so you know how important awareness and the SBA is to us.
Gavin has myleomeningocele, his lesion was from L-4- his sacral region. He also has hydrocephalus which requires him to have a VP shunt, this is inserted through the skull into the ventricles with tubing laying just beneath the skin down his neck and emptying any extra fluid into his abdomen. He also has Arnold Chiari and up until lately he has been asymptomatic. 
Gavin wears AFOs which are braces to help support and correct his ankles/feet. These are a blessing and a curse. They help his muscles Learn the right way to walk and support him so he doesn't fall constantly yet they cause pressure sores on his feet, since G has little to no feeling in his feet these can become serious blisters. We have fought several staph infections including MRSA and cellulitis. When Gavin gets a wound it takes him months to heal and it often looks worse before it looks better. We usually have to take a trip to the ER or pediatrician to get a high strength antibiotic and Jason spends hours cleaning and wrapping his wounds while watching for staph. 
Every week Gavin attends physical therapy, he's been attending PT for 3 years now and every day he gets a little bit stronger. 
Gavin has a neurogenic bladder and had kidney reflux when he was born. The kidney reflux has since corrected itself but his "oddly shaped" and small bladder just cannot hold urine on it's own. This means we have to catheterize him every 3 hours, this is a tedious task and getting on the right schedule can take years. This causes Gavin to have frequent UTIs (which causes him to have to take antibiotics to cure and since he's been on so many antibiotics there are only 2 that work for him). 
Gavin cannot control his bowel all the time, he often gets constipated and that causes his body to clean out during this time we go through at least 10 diapers a day. We've been on 2 different bowel programs neither has worked for him but we are still working on it. Sometimes he recognizes the pressure and can make it to the bathroom on time but most times we are too far from a bathroom to make it in time. Because of these two issues Gavin is and likely will be for the majority of his life in diapers. Out of all the things that we've encountered with spina bifida, this is the hardest for me to swallow. I want my child socially accepted and this makes it complicated. I still pack a diaper bag for my 5 year old son. Gavin also takes medicine to help his bladder hold more urine between cathing, this helps with leaking between times. He is on detrol. 
Along with everything else Gavin has an extremely sensitive gag reflex and high palate, he has texture issues and it's often hard to find a healthy food for him to eat. He's gotten much better but he still stays clear of pudding, mashed potatoes, gravies etc.. It takes him forever to chew pieces of meat and he often soaks his food in whatever drink we've given him at the dinner table (which is quite disgusting at times lol). 
Until recently we thought Gavin's Arnold chiari malformation was asymptomatic, but now we know it isn't. This is where the cerebellum is basically flattened and pulled down blocking the spinal column. Right now the symptoms we are experiencing with this are exhausting. Gavin often gets his emotions confused, if he is happy he may act out as mad or sad and when sad he often laughs. This has made discipline almost impossible. When scolded or punished he often laughs (which at first infuriated me) until we realized this is a psychosocial problem associated with AC. Spanking isn't an option since he cannot feel it and he doesn't care if you take everything he has away. It's an exhausting situation and strenuous on our marriage as well with the other children since if they laughed at us for being punished  they would be in hot water. 
Finally I want to talk about my nemesis. The shunt. I will never forget how absolutely heartbroken I was when I got the call he would be having brain surgery the next day. Part of it was selfishness I realize, but the other prt was pure fear. Gavin will never play football,that was the first thing that went through my head, we are a HUGE football family and I realize now that was a selfish and shallow rationale but it was real at the time. Now the real fear is this- we've gone 5 (almost six years without a revision) every single day I wake up with that thought in my head "is today the day?" Because it is something that is inevitable, it will happen, will I know the signs? Will I get him to the hospital in time? Every headache, every morning he actually sleeps in or falls asleep at an abnormal time, every time he is dizzy or sick or acting not himself I have to ask "is this it?" 
There is no cure for spina bifida, Gavin will always have it, it will always be part of him but I will not allow it to define him. It's likely as he gets older he will lose his mobility and have complications but as of right now, we take it one day (and one crisis) at a time. 

Why we support the Spina Bifida association: 
The spina bifida association has been around since the early 70's it is the ONLY national voluntary health agency soley dedicated to enhancing the lives of people and families with people affected by spina bifida (which is the number one permenatntly disabling birth defect in the US). They are the ONLY ONES! The help educate, they help connect us with accurate information and reliable resources. Gavin will benefit from their resources for the remainder of his life and it's imperative that we fundraise to help them remain open. They offer scholarship programs as well, and we all know how important a college education is these days! 

So please consider helping Gavin this year by donating. No donation is too small. Even $5 helps us get closer to our goal   
If you feel led and can find it in your heart to donate $5 even $10 it would mean so much to our family and other families like us. You can donate here:
100% of the proceeds goes to the cause with that. 
Or you can order scentsy here:
Make sure you choose the party "spina bifida awareness" 20% of that goes to the cause. 
Thank you! 

Wednesday, October 22, 2014

Some quick updates!

Well here we are, it's officially Fall. I've waited all Summerfor Fall and now it's here and BOY AM I SWAMPED! I'm going to do my best to update!

Update 1: It's October so that means SPINA BIFIDA AWARNESS MONTH!! Every year we do a little something to help raise money for the local chapter of the Spina Bifida Association. We usually have an amazing turn out but I realize this year times are just tight on everyone! I was enthusiastic and set a bigger goal (usually we set the goal at $2000, this year I was apparently feeling ambitious and set it at$5000) so Team White Hawk pledged to try and meet a goal of $5000, I thought it would be an easy task, turns out- not so much, HA! So I've lowered my expectations to just 20% of that ($1000). Hopefully we can raise that much. 
The spina bifida association is a wonderful organization that has dedicated it's cause to helping families affected by SB. They pour their heart and soul into creating events and finding services for families like us FREE! The SBA means so much to our family, it was one of the only places we found positive yet informative information about our sons diagnosis. We found Peace in reading stories and seeing our REAL options rather than hearing "you should abort", "abortion is your best option now" etc.
With our support and fundraisers they can keep the doors open and help more families like mine and assist Gavin as he moves forward in life and becomes an adult. 

If you feel led and can find it in your heart to donate $5 even $10 it would mean so much to our family and other families like us. You can donate here:
100% of the proceeds goes to the cause with that. 
Or you can order scentsy here:
Make sure you choose the party "spina bifida awareness" 20% of that goes to the cause. 
Thank you! 

Update 2: FIDDLESTICKS! So I am super excited to have been included in this event! This is what it's all about folks! Helping, paying forward all the support and help we received! So I will be giving families touched by special needs or terminal illness FREE photo sessions! Your thoughts and prayers that it runs smoothly will be much appreciated! 

Update 3: 
Where do I even begin? As you can see from updates 1 & 2 I am super busy and to top it off I'm running a table at the Holiday bazaar for the littles elementary school PTA which means when I am not up to my elbows in fundraising or photography I'm covered in yarn and crochet needles! 
Avery and Gavin are loving school! Gavin only cries on Wednesdays because I have to go pick him up and take him to physical therapy and then bring him back- that's when he cries. But every day he is getting stronger (physically and emotionally). Both are doing well in school! Walker is growing so fast I just don't know what to do, he's become such a handsome young man. He's playing football for the high school JV team and he is LOVING IT! 
We've all been sick with a cold or something so it's been pretty lazy around the home front. Yesterday all the kids were playing on the big swingset mamaw bought them a few years back (after the tornado broke theirs) and the entire thing collapsed on them Thank God no one was hurt. Gavin broke another AFO (brace) so I have been busy fighting with the insurance company to cover it. It just never ends. Luckily we have a lot of happy things that happen that pretty much cancel out all the bad :) 
Avery is talking about her upcoming birthday and weighing all of her cake options (hopefully it will be something easy on mom :) ). They are both figuring out what they will be for halloween, and by figuring out I mean changing their mind every 2 seconds. This year Walker will be with us for Halloween, this will be the first halloween I've had with him since 2006. I'm pretty excited :) 

Well motherly duties call so I guess that is about it for now! 

Friday, August 22, 2014

A thank you.

I am sitting here this morning watching Gavin eat his cereal. I am thinking about the emotions I will go through in the next weeks as he starts his new chapter. Kindergarten.

I am nervous, sad and excited all at the same moment.

It made me think about everything we have been through to get to this point and all of the friends and family that have been there along the way (you know who you are). I spent probably the first 4 years of his life in a fog, tired mentally and physically and now it is slowly becoming normal, routine.
Without all of you I wouldn't have made it. You guys have stepped up and helped us so much whether it was donating to the Spina Bifida Association, purchasing items from our fundraisers, raffle tickets or just showing up to walk, being there when I needed someone to just cry to and vent even if you didn't understand why I was crying about catheters or enemas or vp shunts, you listened. Some of you just helped by understanding that our family is "special" and our normal is not "normal". Some of you have kept us included regardless if we could make it or not. You have supported Gavin (and the other two) through their sports, you cry with joy over his triumphs even if it is the tiniest of accomplishments. You have made us feel "normal", loved, and included and for all of that, I thank you.

Gavin's battle isn't over, it will never be over. He will spend the rest of his life in Physical therapy so he can keep his ability to walk, his months will be riddled with doctors appointments, surgeries and his days with medications, orthotics and the like. I am ok though because I know you will all continue to support him.

I am proud to call you all family (friends included). You will never understand how much it has meant to us.

Tuesday, July 15, 2014

The climb....

My husband and I have been married for 7 years. Walker was 6, Avery was born the year we married, Gavin 18 months after that. When we were told of Gavin's birth defects, it was like a slap in the face. We have struggled, mentally, physically and financially for the past 5 years. Jason has been working hard while I stay home and be Mom.
I found peace in photography, Jason found peace in fishing. For the past few years we've been talking about how we can better our family, financially, yet still give back to the community. We have thrown so many ideas around but they all seem to revolve around spina bifida/special needs children.

I have finally decided to take the scary plunge into my own photography business (this is the climb, to success). I tried once and failed, but now, I have grown, I have studied, I have practiced and I have a plan (and the kids are older and will all be in school). I still wanted to give back and I have been thinking and praying on how I should or even could. I am not sure why I didn't see it before, but now, I do.

Fiddlesticks Photography will give back in a big, big way. Along with photoshoots and offering accessories Fiddlesticks wants all the special needs families to know they deserve quality, wall worthy photos too! So that is where giving back comes in. We want to offer free or low cost shoots to families with children that have special needs. We understand that is a broad description but even "invisible" disabilities are financially draining. I haven't completely decided how I will give the shoots, I want to try and do 2-4 a month. I may do something that allows people to nominate families and have my facebook fans vote. I am not sure. This is where I need your help. I need your suggestions, your input, you thoughts. How can I make this successful? How can I help these families? Would you want something like this? (I sure know I would have loved to have this when G was young).

You can visit my FB page here (I haven't said anything on there yet, but I suppose I have to let the cat out of the bag sooner rather than later)
Don't be shy, I really want to know what you think!

Tuesday, May 20, 2014

Sticks and stones may break my bones but words will never hurt me.

I grew up with that mantra.
It is true, to an extent.

*disclaimer: I am about to rant on a touchy, touchy subject; Bullying. This may get long so stick with me. This is raw, this is real. I believe TRUE bullying, as in someone making a persons life so miserable that they chose to take their own life or someone elses is a terrible thing and it should be dealt with accordingly.*

This has been a long time coming, these are my own thoughts, my own opinions and I am entitled to them as much as you are, I understand that there may be some anger, some disagreement and that is ok,I understand I am publicly posting this which allows you to post/comment your own opinion, diversity is a good thing in many cases it causes people to work together and find common ground. This came about because of several situations with my daughter in which she has said "there are bullies at school" and when asked to define what a bully is giving answers like "people that hurt my feelings", "people that don't like me" "people that tease me", "People that don't invite me to their birthday party" etc... All things she is being taught in school. She cannot hide from mean people, different people, people that dislike her, her entire life. She must learn young how to properly deal with these people and the emotions that come with it, not hide behind a broad label such as "bullying".

I grew up in the 80's and 90's, I moved smack in the middle of my 4th grade year. Everything was awesome and exciting until my 5th grade year. I spoke fast with a unique southern drawl. I still lived in the south (Virginia) when I moved but my accent made my English almost foreign to the people here. I had to learn to slow down and enunciate. I made friends quickly my 5th grade year (another new school after our move, again) some of which I still talk to. I apparently made a lot of enemies, I was an easy target I suppose, tall and skinny frizzy overly permed hair freckles and skin a shade lighter than Casper the friendly ghost (I got called that often). I was a walking target. Sometimes it was hard all I wanted was to fit in, I just wanted everyone to be happy and like me. I didn't understand even in my fragile teenage years that it was just not possible to be truly liked by everyone. It was rough, I was called names, I was ridiculed and embarrassed in front of the entire class on several occasions. I wasn't a spoiled child, I had everything I needed and quickly learned you do not get everything you want, even if you work hard sometimes it just isn't possible (it isn't a bad thing). One day (I believe it may have been the turning point for me) I was riding the bus home. I had BEGGED for some timberland boots and my Father obliged. On this particular day I had to wear tennis shoes for P.E. and it was close to the end of the day so I wore my sneakers home and carried my boots. The bus went up a hill and my boots slid to the back of the bus, I was taunted by the kids in the back of the bus that they had my boots (I don't even recall their names) I asked for them back and then it happened, they threw them out the window. I was crushed for several reasons. For one I thought those boots would make me accepted, for two, I understood what getting those boots meant, it meant my parents took some of their hard earned money and bought something for me that was by no means a need and last but not least how on Earth could people be so mean? HOW!?????

Fast Forward from that very moment. I became a bully (not this petty picking crap that people cry bully about now, I am talking full fledged mean person, hateful, ugly, nasty person)

I began fighting, rebelling, being ugly, calling people names for no reason simply just anger.

My Senior Year of High School My Best Friend and I sat in her Mother's Van and I decided the next freshman to pull into the parking lot would be my target. Poor Girl. Her name was Brooke, I was so mean to her. I truly BULLIED her her life was probably a living hell day and night because this wasn't just at school this was in public no matter where I saw her. I chased her once on the Avenue, her eyes full of fear and ducked her pretty brown curly haired head down in the seat likely praying I would go away. I owe her an apology and even that will not give her what was supposed to be one of the best years of her life back. I regret it, I am a different person now.

When I was in school there were fights (it is bound to happen you have 400-1000 people with whacked out hormones and popularity on the line). When I say fights I mean vicious fights. One year one girl stomped another girls face with her cleats. (at least that is the story that went around). Can you even fathom what would happen if that happened in the schools today!????

Now- What I am about to say comes from me, I have been the Victim and the Bully I am the Mother of 3 children One of which has had moments of being what you would call a bully in todays world but has also had moments of being the victim, one that has had this picture of what bullies are embedded into her brain and cries bully in almost every scenario and then one that is likely going to be a victim of bullying simply because of his physical appearance ('handicap' though I don't really like to use that word with him, it is true).

WHY- why are we teaching our children to cry BULLYING constantly?

Let me explain:

From the governments bullying link: (here)

Types of Bullying

There are three types of bullying:

Verbal bullying is saying or writing mean things. Verbal bullying includes:
Inappropriate sexual comments
Threatening to cause harm
Social bullying, sometimes referred to as relational bullying, involves hurting someone’s reputation or relationships. Social bullying includes:
Leaving someone out on purpose
Telling other children not to be friends with someone
Spreading rumors about someone
Embarrassing someone in public
Physical bullying involves hurting a person’s body or possessions. Physical bullying includes:
Taking or breaking someone’s things
Making mean or rude hand gestures

Those are all fairly broad and in a lot of those things listed I can honestly say they happen to me daily or at the very least monthly.
Teasing? Honestly? perhaps this is not the word they wanted to use?

the definition of Tease
gerund or present participle: teasing
make fun of or attempt to provoke (a person or animal) in a playful way.

The key word in the definition is playful. My family and I tease each other a lot I tease the kids my husband and I joke around with each other, it is playful interaction. The only time teasing could ever cross the line into "bullying" would be if it were to intentionally hurt someones feelings, and be repetitive.

Name calling. I agree, we shouldn't call each other derogatory names, it isn't nice, play nice. But this sort of ties in with teasing on this next example:
In the 6th grade (i think) We had D.A.R.E, we were given a white piece of paper to write our names on so our officer could address us by name. I scribbled mine out quickly H E A T E R. Heater. I freaking wrote Heater. It was quickly called out and for, well, forever people still pick and call me Heater. That teacher, to this day when he sees me calls me Heater. So fast forward a lot of years (more years than I care to count) and my middle child is in kindergarten. She is asked to write her name on something or another at school and she probably hastily writes it: A V E R. Aver, she forgot the Y (obviously it runs in the family) so for the better part of a week the children called her Aver, chanting Aver, Aver. She comes home and says "there are bullies at school, I don't want to go to school, they are mean." I ask why, she tells the story, I giggle a little because lo and behold I have a story to share with her. It didn't help, why didn't it help? Because she tells me that "that is bullying and her school had people teach her about bullies and she should not have to deal with bullies"

Leaving someone out on purpose.
I have a really hard time with this. It is ok not to get along with someone. Not everyone gets along, my daughter should not have to invite everyone in her kindergarten class to her birthday just so she "doesn't leave anyone out". Why are we teaching our children this? Why are we making them "hang out" with people that the mutual feeling is, we don't get along? You shouldn't hate that person, you shouldn't be ugly to that person you should be cordial and kind but if she wants to play with her best friend on the playground and doesn't ask billy bob to come play because they just clash, is that bullying?

The rest I can agree to as they should be general rules to follow in all walks of life but to classify ALL of them as bullying?????????

"Bully" the word is losing its meaning. It is becoming much broader than it should to appease a large quantity of people. Kind of like the word Love, I am guilty of it too, I love asparagus, I love photography, I love ... (I used to say I "love" something when I was a kid and my mom would say "are you going to marry it?" I get it now, we overuse a powerful word and it loses its luster)

We live and learn, our Youth is learning right now. I agree a child should not fear their safety at all, all children should be able to wake up and get ready to go to school without worrying about if they will be physically or truly emotionally harmed.
But here's the thing about emotions: As children and teenagers we are still figuring things out. People will dislike you, crushes will turn you down, boy/girlfriends will break up, people will let their mouths say things they think without thinking it through all of these things cause emotions. Our children need to learn how to deal with emotions. These are the same emotions they will deal with as adults and if we do not teach them now how to rise above these things they will never make it.

Our children have to be able to function in society. Can you imagine the police calls for bullying when this generation is of age? The current generation is being raised to become entitled, emotionally unstable, unable to function adults. Our children are our future.

Tuesday, May 6, 2014

FIVE and possibly a picture overload.

I am writing this early because I know I will get busy and the emotion is already there so that is when I do my best writing. On Sunday Gavin will be 5.

I read a post recently about a father of 2. He talked about how the second child's firsts weren't as amazing as the first's because he had already seen that done and he decided to make a list of lasts because these were moments he would only experience one last time.

I think Moms and Dads are wired differently, in fact, I know they are. I was just as ecstatic for Walker's first steps as I was for Avery's and of course I was elated when Gavin took his . However, my LAST baby is turning 5...FIVE as in half a decade, where did the time go, kindergarten next year, holy cow slow down, FIVE. (Walker just turned 13, don't even get me started on the 13, thirteen as in holy cow 3 years and he will drive, 5 and he's an adult, stop growing you're already taller than me, 13.)

Five. In the past five years I've lived a lot of bittersweet lasts. I will never have them again, never. Why oh why does time go so very fast.

Gavin, 'white hawk of battle'. So he was. Born a toe head and battled his wars. He's still fighting and he's winning. His name fits.

It doesn't seem as though five years has passed. May 11th 2009 I certainly didn't see today as coming as fast as it has. But it's here, I cannot stop it. As much as I want to pause, I cannot. 

Gavin: Determined, strong, fighter, adorable, mischievous, flirt, happy, blue eyed, farmers tan, t-ball player, iPad guru, hard headed (wonder where he gets that), miracle, independent (I have to admit there was a lump in my throat when I typed that), five years old, FIVE.

You all know about Gavin. To sum it up without being completely redundant. Gavin was born with spina bifida, hydrocephalus and Arnold Chiari Malformation II. He spent almost 1 month in the NICU at chippenham and had 2 surgeries (on closure and one shunt placement). We were told Gavin would likely have a poor quality of life, that he probably wouldn't walk and the best option for the child was abortion.

May 2009

Finally home where he belongs!

This picture means so much to me. I don't know how many of you know this but Gavin literally cried all day (and a lot of nights) for the better part of 4-6 months. This chair he sat in I would put my foot on it and bounce him all day. It was the only way he would be happy unless he was eating. I look at this and see that smile and all those months of sobbing (he and I both) fade away. All it took was one picture, one moment to erase all of that.

boom boom fire power

I love this picture of him, however, that day I was thrust into the world of people not understanding 'special needs'. The photographer kept asking how old he was and wanted him to stand she didn't understand that he couldn't and was like I will put a block up there, lady.he.can.not.stand.yet. anyway the picture is adorable.

His first Birthday. He had serious texture issues and would not eat much of anything. I actually had to smash the cake into his face to even get a picture of him with icing on his face. He was less than thrilled.

his nemesis, the ice cream cone.

we should probably stick to a bowl and spoon.

photos he will hate me for one day.

Random photos in no particular order.

Just because this is so Gavin.

so happy birthday Gman. We love you so very much and are so VERY VERY proud of you.