All Our Girls Are Special …

 

Father's Day is tomorrow! We asked Rett Dads to be our guest bloggers for this past week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.  

 

READ THESE PAST DADDY POSTS:

Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."

Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"

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Blog #6: Roger Brooks, Juliana's dad

 

It’s hard to believe that just three years ago, we received the most devastating news of our lives, our beautiful Juliana was diagnosed with Rett Syndrome. In the three years since Juliana’s diagnosis, our family has learned a lot about Rett and we continue to learn more every day. We’ve often said the most frustrating thing about Rett is it is so darn inconsistent. Throughout all of this though, what I’ve learned, Rett or no Rett, all of our girls are special.

Kristy and I are fortunate to have been blessed with two beautiful girls- Juliana and Olivia. They fill our lives with laughter, fun, excitement, and of course tears and frustration at times. They light up my life and when we get to spend quality time together being silly, reading books, or just sitting watching a movie, I’m reminded of how special my girls are.

Living with Rett Syndrome by no means is an easy task. In fact, I’m not ashamed to say it’s brought me to my knees on several occasions. It’s difficult to watch Juliana struggle throughout her day to do the simplest of things.. In the same breath, I watch Olivia cope and deal with watching her big sister struggle and the patience she must display when things don’t quite go the way they should. They are both incredible little girls that are mature beyond their years. But if we look at all of our girls as special, Rett is just a wrinkle in the day, that’s all it is. Don’t get me wrong, some days; it’s a wrinkle that becomes a tidal wave, no doubt, but a wrinkle none the less. It’s all in how you look at it.

This father’s day, I’m just thankful; thankful for my special girls that fill my heart with so much love. I’m so proud of the beautiful young ladies they’re becoming. I’m proud that they have one of the best mom’s in the world, teaching them every day what it means to be strong, graceful, hardworking, and respectful, with or without disability. Proud that we’ve surrounded them with the same strong role models that love them more than they will ever know. I’m just darn proud and thankful of the life that we’ve been given; trying every day to appreciate all the ups and downs.

God has trusted me to care for these two wonderful little girls that I just know in my heart have purpose and meaning. I know they will do incredible things with their lives, and you know what, they already have in many, many ways. Kristy jokes often and has even blogged that Juliana and Olivia were “never more devoted sisters.” They are everything that a father would want their children to be; loving, compassionate, humble, graceful, and strong. They are my girls, my daughters, and they will always be special to me, Rett or no Rett.

-Roger Brooks

My Little Country Girl

 

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:

Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."

Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."

Bill Farnum, Ella's dad: So Weak, So Strong

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Blog #5: David Luntz, Maryjane's dad

 

When I found out I was having a daughter I was like in Heaven. I was really looking forward to raising a kid again and running around crazy, raising her as a person who appreciated wildlife and enjoyed hunting, atv'ing, riding horses and basically just being a country girl. 

It was Oct 16th 2008 when that changed.  I had Mj at the moose lodge with me as we were setting up for that night's NRA banquet. I was walking with her to the bathroom when she fell to the floor with a grand mal seizure. There's nothing so scary in life as watching your daughter go through that. The hospitals, eegs, all the tests continued and she continued to have a series of petite seizures that sent us to the hospital twice more. 

In a period of three weeks my dreams were shattered. There was a period of about three weeks before they narrowed the diagnosis to Rett, they first tested for Angelmans. It was a pretty traumatic experiance. She is now 5. Three years have past. She is a terror! LOL... We are very fortunate.

Mj is an extremely strong girl, very active. She rides horses, and loves riding in the atv and going hunting with us.  She loves animals, and actually has her own little mini farm that we are building for her. Not only does she love animals but she is, I would say, animal crazy.. I guess like most little girls. She has chickens (her favorite), 3 mini horses, a goat, fish, 2 kitties and 2 dogs. Did I say she likes animals? 

We have plans to add an outside aviary for turkeys as she likes to walk around with them and actually will allow her to sit right next to them and pet them. Next year we want to build her a pen for her most absolute favorite animal - piggies. 

The joy I get from her facial expressions and laughter over chickens and piggies is unbeatable.  I am replacing the old dreams with new dreams and enjoying the little moments, the smiles, occasional word or verbal response, the time we get to play togeather running around, hiding in blankets, playing on the slide, these are the best. We now realize she will be with us for the rest of our lives, and look forward to all the new experiances, watching her learn and grow. She is our world and my little country girl.  I couldn't be any happier. Maryjane Luntz my daughter.

- David Luntz

So Weak So Strong

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."

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Blog #4: Bill Farnum, Ella's dad

 

In late 2006, my wife Beth and I were desperate people, conducting searches on the internet until 2AM every night. We were not searching for the latest and greatest travel deals, or the newest YouTube video sensation. We were searching for all the information we could find on Autism spectrum disorders, as our daughter Ella had then recently received the first of numerous diagnoses. Doctors, therapies, causes, clinics, insurance coverage, special diets.... you name it, we were researching it.

Later in December of 2007, Ella was finally diagnosed with a debilitating neurological disorder called Rett Syndrome. It is a devastating genetic disorder that robs young girls of their speech and motor skills, and can leave them crippled and unable to communicate with the outside world.

When we received the diagnosis of Rett from our pediatrician, a stopwatch started ticking in my head. It comes and goes and can be louder on some days than others, but it is always there...tick, tick, tick. I don’t want to say that I speak for all parents of special needs children, but I know that I feel like the clock is always ticking down and that we can always be doing something to help better our children’s futures.

Parents of special needs children tend to “ask a lot.”  If you were not comfortable raising your hand in class in school, you are going to have a tough road ahead of you. We ask a lot of questions: Who is the best doctor for that? Does insurance cover it? Do you know of a good dentist that works with special needs? Where can I find diapers for a 13-year-old?

We ask a lot from our special needs children. We ask them to endure endless hours of physical, occupational and speech therapies. We ask them to eat just one more bite. We ask them what they want or need, possibly 50-60 times a day. And we ask them to please just keep breathing.

We ask a lot from our other children. We ask them to be patient while we work with our special kids. We ask them to understand things they will not comprehend for a very long time. We ask them to love their siblings unconditionally.

We ask a lot from our therapists. Can we double up appointments this week? What else can we try? How do YOU think she is doing?

We ask a lot of our children’s battery operated musical toys. I think we single-handedly made Duracell stock jump 2 1/2 points last week....

We ask a lot of our friends and family. We ask them to try and understand situations that they have never been in and may not be sure how to react or help out with. We ask them to understand that we can’t make it over again for dinner because Ella is having “a really bad day...” We ask them to just listen, a very hard thing to do.

We also ask a lot of ourselves. We ask ourselves to keep asking, and to never stop until our children can kick a soccer ball, have a tea party with their friends, and say “I love you Mommy and Daddy.”

And as much as we ask, we appreciate more. People that say “no problem, sign me up” or “just tell me what I can do to help” are what make us get up in the morning and start asking all over again...

I am a big fan of music and it is an integral part in our lives. One of my favorite bands is Gov’t Mule, an offshoot of the Allman Brothers. I was listening to one of their new songs the other night entitled “So Weak So Strong” and whoever wrote it must have a connection to Rett Syndrome as it describes our girls to a tee. It goes:

So weak so strong, nothing's forever in her universe
Bringing comfort, bringing pain, so weak so strong

So weak so strong, turning mountains into seas of dust
Finding courage when all hope is lost, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, there's only one of her in the universe
Bringing darkness, bringing light, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, she's never really what she seems to be
But life without her seems so bleak, so weak so strong


- Bill Farnum

"I just have to love Kristyn with all my heart."

 

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry: "No laughter. No fun. No thank you." 

Bill Hileman: : "Be Happy No Matter How Hard the Obstacle"

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Blog #3: Sean Schenk, Kristyn's dad

Sharing my feelings about something like this has never been something that I am too good at. When I first found out I was going to be a father to a little girl I was terrified. I was nervous about things like low-cut shirts and boys. After finding out that my daughter has Rett Syndrome I hope to have these worries as she gets older.

Kristyn really only met milestones up to six months old. I was worried about her not meeting these milestones but I always held on to hope that she was just developing a little slower and every thing would be fine. I remember my wife crying at night and me having a hard time relating to what she was going through because I just knew that my little girl was just as perfect on the inside as she has always been on the outside.

It was killing me to get a diagnosis to know exactly what was wrong with Kristyn so that I could know what I needed to do to make it all better. Finally getting the diagnosis of Rett Syndrome was very hard for me. I remember going to work the night we got the news and just feeling broken, like I couldn’t move. I ended up leaving work early so I could be there for my family and truly so my family could be there for me too.

Knowing that Kristyn has Rett Syndrome doesn’t really ever get easier but it is much more manageable to live with now. I know that all I can do is hope for a cure and until that happens I just have to love Kristyn with all my heart.

Kristyn has taught me so much in her two years of life. I am being more and more patient everyday. There are times when I can get so upset because I cannot figure out what is wrong with her or I can’t get her to eat but then all of a sudden she will crack a little smile and everything feels okay. I know that Kristyn has plenty to say I just wish I knew what it was; it must be so hard for her to have so much to say and to not be able to say it.

It is not easy having a daughter with special needs but I wouldn’t trade Kristyn for the world. I have gained so much more respect for other parents who have a special needs child. I love the fact that every day I go on Facebook there is always so much support for me and other Rett families.

I think that hardest part of having a girl with Rett Syndrome is the feeling that she may miss out of some of the best parts of life. I want to see Kristyn be able to go to prom, get married, and someday have children of her own. It’s hard feeling like these things may never happen. Right now all I can do is enjoy the little things like feeding Kristyn and having her fall asleep in my arms. Even when I found out I was having a little girl I never imagined the feeling I would have when I am looking into those beautiful blue eyes she has. Kristyn means more to be then I can describe in words.

Sean  Schenk

"Be Happy No Matter How Large the Obstacle"

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry: No laughter. No fun. No thank you.

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Blog #2: Bill Hileman, Brynn's dad.

My daughter Brynn was diagnosed with Rett Syndrome when she was 2. We soon found that although she was not physically able to do many things, she still understood and was just like other children her age.

One of our favorite things to do is to swing at the park. Even when there is no swing that she is able to use I will swing with her on my lap (we can go higher that way too). Brynn LOVES Mickey Mouse. I think I know every song and have seen every episode of the Mickey Mouse club house. Our other favorite thing to do is to go out to eat. Brynn gets so excited while we are waiting for our meals to come.

When we first found out that Brynn had Rett Syndrome it seemed like a daunting task. Of all of the possible diagnosis this one seemed to be the worst. As we continue to learn more and more about Rett Syndrome our future challenges seem a little less scary.

We know that there is hope for our daughters. I think that Brynn has taught me more than I could ever teach her. She has taught me how to smile through adversity, laugh when things get tough, and to be happy no matter how large the obstacle.

Bill Hileman

"No laughter? No fun? No thank you."

With Father's Day just one week away, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

First up: Pete Curry, Maisy's dad.

We had it all planned …. My wife would take three months maternity leave and then I’d cover things until a slot opened up at the on-site day care at the University where I worked. I envisioned taking lunch breaks and bringing Maisy into the lab – maybe she’d learn to love real science instead of political science like her mom. As it turns out, I do get to bring Maisy to the lab, but it involves things like blood draws and eeg’s, not exactly the fun experience I had planned. Rett changes things. And, no way around it, change is hard.

I’m trying to think of what advice I’d give someone approaching their first Father’s Day as a Rett Dad – my first was spent curled up next to my daughter in a hospital bed, which was a more harsh introduction than I think I needed. At that point, I just wanted the seizures to stop (and maybe a cup of coffee). On the practical side, I would say figure out some parts of your daughter’s routine that you can take on. For me, it’s getting Maisy ready for school – dressed, breakfast, meds, pack the bag, potty, get her to the bus. I also do a bunch of other things, but my wife is going to read this and, being a lawyer, she’d probably argue that I don’t always do this or that.

But, more important, I guess I would say that remember your daughter is not as fragile as she looks (or your wife thinks). You can dunk her in the pool, tickle her chin, and swing her high. Yes, she may start to laugh too hard and have a little seizure, but what’s the alternative? No laughter? No fun? No thank you.

Happy Father’s Day.

Pete

Shedding Some Light on Sunscreen

Summer is here! BIG QUESTION on our minds: How do we protect our girls from the sun without harming them in the process? There is actually a lot of controversy out there about sunscreen.  We hear it's good, essential in fact, but then we hear about toxic ingredients and that it's imperative that we get Vitamin D from the sun.  So what are we supposed to believe/do?    

First, we'll give you a little rundown on the topic.
Second, we will recommend a great nontoxic sunscreen!

Take a look at the different types of ultraviolet light, UVA and UVB.  

UVA waves are fairly constant during the day and throughout the year.  They can pass through a cloudy day and penetrate your skin deeply causing free radicals and painful sunburn.  

UVB waves are low in the morning and evening and peak at midday.  They are the waves that are responsible for helping your skin produce Vitamin D.  

Experts say the best way to get your Vitamin D but stay safe is to have limited sun exposure during the strong mid day sun everyday.  This means about 10 to 20 minutes of strong sunlight in order for your skin to take in the necessary UV rays to produce Vitamin D.  After your 20 minutes in the sun stay in the shade for the rest of the day or cover your skin with clothes.  This is the ideal for the most beneficial and safe sun exposure but is not always possible.  

Busy families are out at the beach all day or playing in the pool or out at baseball games - places where there may not be ample shade in the ideal places and most of us don't want to be covered from head to toe in clothing on a hot day.  So almost all of us need protection from sunscreens from time to time.  So how do you pick a safe one?

First you need one that protects again UVA and UVB rays.  UVB rays are "good" but only in moderation, they can also cause free radicals with excess exposure.

ABSORB OR BLOCK?
There are two kinds of sunscreens: chemical and physical. Chemical sunscreens ABSORB the UV radiation. Physical ones block UVA/UVB radiation by reflecting the rays/physically blocking them.

                                     
YIKES! Second, there is a LONG list of chemicals commonly found in the "chemical" sunscreens that can be toxic - check your sunscreen bottles and if they contain any of these chemicals you might want to consider tossing them:
 
oxybenzone
abobenzene
retinyl palmiate
parabens
fragrance
Para amino benzoic acid
Octyl salicyclate
Avobenzone
Cinoxate
Padimate
Dioxybenzone
Phenylbenzimidazole
Homosalate
Sulisobenzone
Menthyl anthranilate
Trolamine salicyclate
Octocrylene

Third, take a look at the other kind of sunscreen: PHYSICAL sunscreen. This is a safer kind of sunscreen that is not made from chemicals but rather minerals.  Common minerals are Zinc Oxide and Titanium Dioxide.  These minerals are great for keeping out the suns harmful rays but may be harmful to you if they are broken down into very small particles called nanoparticles.  Nanoparticles are particles so small that they can actually penetrate the skin and get into the body where they can attack DNA and cause all sorts of damage.  Sunscreen manufacturers started using nanoparticles in their products because it helped the sunscreen to rub in quicker (think spray sunscreens) and avoided that white residue.  Sunscreens without nanoparticles may take an extra minute or 2 to rub in but it's well worth it to avoid the toxicity.  

OK, so just where do we find sunscreen that fits all of these requirements?  

We're so glad you asked!  Let us introduce you to Jenn Miller, Sales Consultant for Ava Anderson Non Toxic, a manufacturer of truly NON TOXIC and GLUTEN FREE personal care products that are not only safe but incredibly effective.  J

Here's what you need to do to order:  
Please visit www.AvaAndersonNonToxic.com/JennMiller  

There are a bunch of other products on her site to check out too! If you have any questions or would like additional info on Ava Anderson Non Toxic or their products please contact Jenn at Jenn.Miller76@hotmail.com.

We want to keep all of our Rett Girls safe this summer! Whether or not you choose to order from Ava Anderson Non Toxic, please keep in mind all of the information we shared here and have a safe and healthy summer!