"Zoe Knows Best"

With Father's Day coming up this Sunday, 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.

 

 

Today's post is from Mike Prask, Zoe's dad

I don’t think I was qualified for the job when I became a father for the first time. Our oldest daughter is six now, and despite (and perhaps because of) many of her wonderful idiosyncrasies, I think I’ve done as good a job as I could have expected.

Our younger daughter, Zoe, has Rett Syndrome, and I can say without hesitation that I wasn’t qualified to handle the responsibilities that have come with that. Any success my wife or I have had in this area we owe entirely to Zoe. Despite the limitations, obstacles, and hardships that Rett has presented to her, Zoe has the purest heart and sweetest demeanor of any child I’ve ever known. Without those qualities – along with her wonderful smiles, her reassuring pats on my cheek, and the two-armed hugs she’s developed the skills to administer in the last year – this job would be so much more difficult.

It has still been a tough journey, for which my wife and I have been fortunate to have each other. Zoe is as healthy as she could be in light of her condition, yet there have still been long nights in the hospital, waiting for her tiny body to rehydrate from a bout of pneumonia, and neurological episodes that approach a blurred line into seizure activity but never cross it. Out of all those scary moments, none came close to the anxiety we felt the night before Zoe’s first day at preschool.

Up until that point, Zoe had never been anywhere without either of us, except for the occasional overnight visit with relatives. She could neither walk nor talk (and still can’t), and yet we had this notion we could send her off to school, on a bus, no less. My wife and I barely slept that night, and I was ready to call the bus company and the school first thing in the morning to say we’d changed our minds.

There was no way she was ready, I assumed; the whole thing would have to wait till she was ready. Luckily, Zoe knew better. Morning came, the bus arrived, and we buckled Zoe into her seat for the ride. She had as big a smile on her face as she could muster and could not have been more excited to start something new, to experience something fresh. The look on her face was unmistakable, and she had the same expression when the bus brought her back that afternoon – ‘What the heck were you so worried about, Daddy?’

That was two years ago, and while I laugh at myself for worrying like I did, I can already feel the same anxiety building for this fall, when she goes off to kindergarten. I tell myself this time, I’m right. We don’t yet know what school she’ll attend or what kind of program it will be. She could attend a school 30 minutes away instead of our neighborhood elementary school where her sister goes. She could be in too restrictive a special needs program, where she won’t be exposed to the appropriate kindergarten curriculum.

We could get our wish, and she could be in a blended program with typical kids, but those kids may not understand her or her condition. It’s terrifying to us, every possible scenario that can arise. But if we continue to be as lucky as we’ve been, the next terrifying situation won’t be the last one. We keep praying there will be another terrifying situation for Zoe to confront around the corner from the last one. She’ll continue to wonder why we worry, and she’ll continue to do just fine.

And every day, we try to figure out a way to make up tomorrow for the fact that we didn’t overestimate Zoe today. Why don’t we do that more often? I guess I’m too afraid, and not equipped, to let the most indomitable spirit in this house have her way with the next obstacle in front of her. After all, around here, she’s the one most qualified to deal with this on a daily basis. I’ll learn someday.

"Looking at the Bright Side"

With Father's Day coming up this Sunday, 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.

Today's post is from Wally Trester, Courtney's dad

That moment in time that we were told our daughter Courtney had Rett Syndrome remains as vivid of a memory as the other ones someone would cherishes such as a wedding or the birth of your children.  I don’t know if it was the realization of the life I was soon to discover, or the one I was leaving behind.  I was still young at heart, and tried to live to the lifestyle.  

Kind of carefree to the rest of the world and only worried about things that mattered to my family and me.  I look back at that time in my life as the hardest test I would ever encounter.  I had just started a new position in the company I work for, things were going great.  I then decide to take on College – something I and many others thought would never happen.  Then things began to take a turn, Courtney’s development was not what it should have been and the extensive testing begins.  Test after more test, medical bills upon more medical bills and the stress of life starts to build.  As the testing continues the dark depths of the unknown continued to grow.  I remember there was one point in time where I thought something has to give – the question was what was it going to be.  

Then the call came in and we now knew what the problem was, and reality came crashing down.  I know what I was doing up to the point that I got the call, but I don’t remember much after the call.

Something happened that day that changed me forever…

I now have a different look on life.  Much of it comes from the experience my daughter has endured.  When things seem like they are at their worst, or I can’t continue on. I reflect back everything my daughter has endured in her nearly 6 years of dealing with Rett Syndrome.  I look at this entire experience and remain humble for what we do have and the things we can do.  

As I know there are others out there in far worse situations.  Had it not been for Rett Syndrome, I don’t think I would be the kind of man I am today.  I would not have had the opportunity to meet so many great people, or help raise awareness for a great cause.  While I hate Rett Syndrome for what it is and how it robs our girls, I’m thankful of the things it has taught me.

So when I think I’ve hit that point that I can’t continue on, I just think about the all the things Courtney endures in a day and the challenges I have already overcome – think of the bright side of the situation and persevere.  Pray for the CURE to give my baby girl the life she deserves.

Ed and Kaitlyn's Special Bond

With Father's Day coming up this Sunday, 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.

Today's post is by Ed Samaro, Kaitlyn's Dad

Kaitlyn and I are as close as any father and daughter could be.  She is my special angel.  We love to swim together,  go on long walks or have an adventure; such as our last trip to Boston; we got on trains we had no idea where they were going just to see a new part of the city.  Kaitlyn also loves to be read to and listen to music.  But I think our favorite is eating together!

We share a special bond and could not imagine my life without her!

 A little bit about Kaitlyn:

Today Katie can no longer talk at all (hence the name "My Silent Angel"). She can walk short distances however, we had to get a specialized pediatric wheel chair for her (this was also very expensive) She has rapid hyper motor movements in her arms which we use weights and other physical therapeutic tools for her. There are many other symptoms to include severe gastric problems and stomach pain. She is totally incontinent. She has to ride in a special car seat; she cannot hold her little body for very long. She is small; she weighs 28.6 lbs. (at the time of writing this). She is in a special school which she gets physical and occupational therapy many times a week.

I would love to say she’s getting better, but she’s not. Kim and I remember the last spoken word she said which is ironically "bye bye". We do the best we can to be positive and do everything we can to help her and to help our mission of educating, raising awareness and pushing for a cure.

Katie really loves Pizza, she loves the merry go round at Lego Land and she loves to be sung to. We indulge her in all the things she loves and anything else we can. She is very beautiful, special little girl!

"Bear Hugs, Headphones, Dora... and more Dora"

With Father's Day coming up this Sunday, 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.

Today's post is by David Bousson, Leah's Dad

Rightly so, many people proclaim that “People First” wording is the correct thing to do for people with disabilities.

But there’s something different about Rett Syndrome and the families who live with it. We’re a close knit group, and we use Rett Girl, Rett Dad and Rett Mom as terms of endearment (Rett Sibling has never really caught on...). We’d all love to see Rett defeated, and we all know that these girls are so much more than their disabilities. Rett Girl has a certain strength to it. These girls put up with an astounding amount of difficulty in their lives, and yet their smiles continue to melt the hearts of those who take the time to receive them. 

When you join the Rett club, it’s painful. These girls go through so much that we can’t even comprehend. You watch this new person progress and then regress. They are crying, and not understanding what is happening to them. Doctors are consulted, often to the frustration of the parents, as Rett is not widely known (no, it's not Tourette's). 

Weariness

Your marriage will be tested, don’t doubt that for one minute. It’s hard. It changes the lives of everyone in the family. I wish I could say that it made me pull it together and become “Captain Awesome Dad,” tirelessly advocating and seeking out every opportunity to make the lives of those in my family better! But it’s been a struggle, and I have, in some ways given up. The best way to describe it is "weary." I only do what has to be done to make it through the day. Ambition and I have parted ways more often than not. Leah is 10, and I am just barely getting to a point where I feel I know who I am again. 

My wife, Tammy, is amazing. She has been there for Leah at every turn, putting aside her needs and wants to care for Leah's every need.  She keeps this family running, and I laugh when someone asks me if my wife works or stays home. She has made her career caring for Leah (she should have her doctorate in "Leah Studies" by now). I am continually fascinated and amazed by how she continues to do all she does. She deserves so much more than she often gets. But she is weary as well. 

All things considered, things are going pretty well. Leah has had two surgeries in the last 8 months, yes, but she is recovering. The smiles are returning once again. She's a charmer, with those beautiful eyes and that beaming smile. It takes a commitment on your part to find them at times, but once she see's that you're worthy*, they show up pretty quickly. (*Worthy: Being willing to wait for her to process your presence, and to let her body finally react.) 

Bear Hugs

We have a thing we do most every morning, when I say goodbye to her and go to work. It's called a bear hug. I grab her arms and wrap them around my neck while she's lying in bed, and make a growl-y bear sound as I give her kisses on her cheek and neck. Because of her hand wringing (typical in Rett), she then clasps her hands together, resulting in a hug on her part. She loves it, and I often feel her tightening her grip around my neck in the closest thing to a hug she can muster. But best of all is what happens on her good days. She growls back. And smiles. And laughs.

Being a Rett Dad is not easy, but I'll be the first to admit that I've got it pretty well off (again, all things considered). Divorce rates among families with disabled kids are really high. I've been blessed with my family, and I try not to take that for granted. I've had a hard time coming to terms with Leah and Rett. I have found many other things to do, when I should be playing with my kids. I feel guilty when I spend more time with my son Riley, and I find myself wondering what to do with Leah. 

I know what I need to be doing, which is just spending time with her. Talking with her, reading books to her, walking with her, playing with her. But often I don't. It's ridiculous, but it happens. There are only so many times I can try to do something with her, only to have something happen where she's in pain, or overly anxious, etc., etc., and then we have to cut the plan short. 

It's hard to explain. I just don't want to set my family up for another failed event. And it's not her fault. Rett Syndrome has taken this away, and I hate it for that. But I love the kid. It's a vicious cycle. Don't get me wrong, we still do things, and have fun. But that is always a lingering fear whenever we go somewhere. It's an element of stress that never leaves.

Riley, my 12-year-old son, has a heart for his sister, and for those like her. He doesn't even think twice about playing with the kiddos who are a little (or a lot) different. He just jumps right in there and starts playing. And it's so wonderful seeing the eyes light up as they are playing with him because he "gets" them. There are many days when we can't go out and do regular family things with him, and sometimes he really gets upset. But life goes on for him and for all of us, and we do what we can. 

Cinderella

When you watch your close friends describe what is going on in their "normal" little girls' lives, you hurt inside (Please though, rejoice in those stories of your kids, and keep posting them. I do indeed want to hear them, they are truly wonderful). The beautiful song by Steven Curtis Chapman called "Cinderella" is especially painful. Many a tear has been shed during that one. Your little girl won't do a lot of things, and you can get lost in the list of what she won't do when you start to think about them. 

But here's the thing. Your perspective needs to change. Focus on what she can do. Search for every little thing that she does on her own, and encourage it. Make a big deal about it. Those things are there, but they can be so difficult to find sometimes. 

Another favorite song, this one written by Rich Mullins, is called "Hold me Jesus" It's a beautiful song, written about those moments where you just need someone bigger than you and your situation to be there for you, and to hold you. 

I need to be that for both Leah and Riley, and that song serves as a nice reminder. Rett may have entered our lives, and it has caused it's fair share of troubles, but we have to do what we can to move through it, and give these kids the childhood they deserve.

Dora and headphones

Rett Syndrome has a soundtrack unique to itself. These girls can't talk, so they have to express their needs in other ways. One of the more common sounds in our house is "The Grinding Of The Teeth." If you've never heard this done on a constant basis for days on end, be thankful. 

And then there is the whining, when something hurts or something needs to be taken care of. I won't even try to describe it. Suffice it to say that it completely robs you of your ability to think. Security companies should study it and turn it into an alarm. It's that effective at stunning a person. 

We've quickly learned to run through a basic troubleshooting list: Are you hungry? Is it gas bubbles in the stomach? A diaper that needs changing? A change of scenery? The wrong Dora? Does your back hurt? What you don't think to ask is: Is there an eyelash in your eye? Does your scalp itch? (Sorry if I just made your scalp itch...) Did you want to go do that thing we promised we'd do today, but forgot since we brought it up yesterday? A leg cramp? Do you miss someone? Do you want to tell someone something that's on your mind? 

Yeah, it gets overwhelming. All the while, she's crying or whining because that's the only way to express the need. If all else fails, we resort to Dora and a pair of headphones. The headphones are for me because sometimes nothing fixes it, and I have to block it out to hang on to a few shreds of sanity.

How to help

So, now that you are thoroughly depressed... sorry. But here's the thing. All of you reading this can make a difference. Or maybe you have already. 

Learn about Rett Syndrome. Spread the word, donate money to research. Participate in a fundraiser. Raise money. Donate money. Yeah, I said that twice. It's that important. 

Scientists believe that they can reverse Rett Syndrome, and they are trying each and every day to make that a reality. But they can only do that with money. So give what you can, and continue to do so whenever possible. Because these kids depend on it. And on you. 

Be prepared for me to keep throwing donation opportunities onto Facebook, and please follow those links I post about Rett Syndrome, so that you can follow the amazing progress. I know you are doing so. I hear you telling me your stories: about the woman you met at a race who was wearing a Run for Rett shirt, and you stopped and talked to her. I hear you tell me about what you learned about Rett. And I enjoy the moment when you read the Purple Card I just handed you (ask me for one!), and learn one more thing you didn't know about Rett. Those moments mean a lot. 

(Here's her Girl Power page: http://girls.girlpower2cure.org/leahb. Did I mention donations? You can do that through her page...)

Thank you for your time, it means a lot to all of us. With your help, there will be a cure. 

"My Little Sweet Pea"

With Father's Day coming up this Sunday, 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.

Today's post is from Chris Langan, Ilah's Dad
 

Sweet Pea, Stinkerella, Princess, Taparella, Sweet Ilah - these are just a few of my nicknames for my Ilah, who was diagnosed with Rett Syndrome when she was barely three years old.   She is eleven now and still the light of our lives.

My wife and I were barely into our thirties - and at the time the diagnosis was certainly a kick in the gut.  I found myself mourning for my daughter's future, as well as my family's - looking forward constantly into what life would be like in ten, twenty, forty years.

What we have learned, though, is that every day presents its challenges, many of them not even Rett related.  Living and dealing with in the moment is the only way to keep sane.  We have four kids now, and although Rett has changed the way we live our lives, it does not define our family.  It has become just "a thing we deal with," another one of life's challenges to be conquered.

Living with Rett has even managed to teach me a few things.  I have learned what it truly means to be a father.  Being Ilah's dad has allowed me to maintain a tenderness I might have lost with growing older.  It has taught me a patience and tolerance for others.  It has taught me that doctors don't know everything and it's okay to challenge them.  It has strengthened my marriage - my wife and I had no choice but to face these challenges arm in arm, or be torn apart.  It has taught me that the little stuff is unimportant, especially in the face of my child's health.

Ilah is the sweetest, happiest, most loving daughter I could've ever hoped for.  She loves to cuddle and be close (especially with me, she is definitely Daddy's girl). She loves to read and listen to music and watch TV.  She loves to play with other kids.  She is just a normal kid, who happens to have Rett; we are just a normal family, and we all love her so.

Chris

"A Really Real Hug"

With Father's Day coming up this Sunday, 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: Matt Greenlaw, Teagan's Dad. 

 

Teagan gave me a hug the other day. Not a Rett hug, where she sort of flops over on you, a -really real hug. She reached her arms up, wrapped them around my neck and squeezed. It was amazing. I’m pretty sure it was the first and only time she’s been able to do that. She knew it too. When she let go, I got her best smile, followed by a big fat kiss. Teagan kisses are a lot like being kissed by a St Bernard, sweet, affectionate, but wet enough that you might need a towel afterwards. It was our moment.

My Teagan is Daddy’s little girl. We have sort of a special understanding. I think we developed it some time during the hours and hours we spent walking around the house when she was an infant and wouldn’t sleep. T couldn’t master the bottle. When mom went back to work, she and I and big brother Reese were on our own every weekend, Teagan just couldn’t get that bottle to work. We tried dozens of different nipples, nothing helped. One night I threw her and Reese in the car, and drove over to the hospital so mom could breastfeed in the middle of her shift. Most nights we just walked laps around the house, with the bottle dripping all over until she FINALLY fell asleep. In retrospect, that may have been our first clue that something “wasn’t right” with our little girl.

By the time she was nine months, her mom was convinced that Teagan wasn’t developing normally. By twelve months everyone else agreed. By thirteen months the revolving door of therapists began making their daily appearances at the house. Sometime around eighteen months we woke up and found that Teagan couldn’t get the cheerios from her high chair tray to her mouth anymore. My now pregnant wife and I dragged Teagan and Reese to appointment after appointment with no answers in sight. We pleaded for Rett testing, Mom knew. It was the hands. At twenty months old, we found out. Rett.  My wife Danielle was home alone. I was out of town, visiting the Grandparents with both kids. Danielle was too pregnant to travel. Teagan’s baby brother Morgan was born two weeks later.

We never had time to process. We had a new baby. We had service coordinators to argue with. Therapists to recruit. I was just trying to stay on top of all the things there were to DO. I never really took the time to cry for what she has lost. I never had the time. Eventually, it hit me. Hard. Sobbing on the bathroom floor hard. And that grief, that sense of loss, it’s with me, with us, with our family every day. Our lives are forever altered. Our little girl is lost. She’ll never talk. Never say “I love you, Daddy.” She’ll never have a first date, never play soccer, never learn to drive, never get married, never be somebody’s Mommy.  She’ll never run, never swim, never ski, never go to the bathroom without help. Every single day that grief, that loss is still there, still fresh. Every time somebody asks that most innocuous of questions, “How are you?” There it is. You are not OK. She is not OK. It’s not ever going to be OK ever again.

There are bright spots. Rett has made, and continues to make my two boys into wonderfully compassionate and understanding little people. I know they will be better men for having had Teagan in their lives. There are some really, really wonderful people in the world. Like Dr. Sasha, who loves all our girls like her own, sees their potential, and has dedicated her career to helping our girls be the very best they can be. Like Sasha would say, “So they’re ready when the cure is found.” Like Kristie, our physical therapist, who has been there for every single victory, and every single loss in Teagan’s personal battle against her body.  And Leah, her teacher. When we had nobody available to give speech therapy , Leah came down to NYC with us, at her own expense, to learn PODD, and has helped Teagan not only to communicate, but taught her how to be a little girl, by having enough respect for Teagan to just play with her. We’ve met so many loving parents, so many loving families.

My Teagan has Rett syndrome. There are many things she cannot do. There are many wonderful things she can. She can communicate beautifully.  She has the amazing power to make you fall completely in love with her with her laugh. She is goofy. She likes to cuddle, especially with her Daddy. She is smart. She is strong, and very brave. When she smiles, she makes it all OK. She gives the biggest, wettest, sloppiest kisses ever. Freely. And this year, for Father’s Day, she gave me a hug. It was the greatest gift I have ever received.

Go Gluten Free - Pamper Your Rett Girl's Gut

Many of our Rett Girls have GI issues or "tummy trouble" as we like to call it. Rett Syndrome is a neurological disorder, and it has long been studied that the gut and brain work hand in hand.

Some Rett Girls have allergies found through blood tests, but when the tests all come up negative for allergies and your Rett Girl is still uncomfortable there may be an intolerance that can't necessarily be detected.  In fact, gluten intolerance has been linked to everything from autism to clumsiness to GI disturbances to headaches and many many things in between.

What is Gluten?
Gluten is a protein food in wheat, oats (there is some controversy over whether oats are gluten-free or not, typically oats are contaminated during processing so they are not gluten free unless they have the certified GF stamp), barley, rye and malt. It is also used as a flavoring, stabilizing and thickening agent in many foods. Gluten is one of the most difficult proteins to digest, especially for an already compromised digestive system. We encourage all of our Rett families to research for themselves and consider removing gluten from their Rett Girls' diets.

How do I Start a Gluten-Free Diet with my Rett Girl?
The first and most important thing to understand is that this is a VERY slow process. You need to wean off gluten very very slowly to lessen the "shock" to your daughter's system. Start with the basics. If your family has pasta once a week, consider using a gluten-free pasta in place of a wheat pasta, then maybe switch out the bread from a wheat bread to a gluten-free bread, then change out the cereal to a gluten-free cereal. Keep changing out foods just one week at a time until eventually all the grain has been removed from her diet. NOTE: Be careful when you introduce a gluten-free alternative that you do so with a "healthy" gluten-free food.  Yep, that's right, not all "gluten-free" foods are healthy despite popular opinion.  Keep in mind that whole grains are best so opt for items made with whole grain: brown rice, quinoa, spelt, buckwheat or almond (or other nut) flour.

Now it's time to work on the "hidden gluten" like the those in some deli meats, salad dressings, processed foods and condiments. These can get a bit tricky. Local health food stores are a GREAT resource. They usually have a large selection of items that are labeled gluten-free (GF). Now even large chain grocery stores are starting to catch on and typically have a designated area and sometimes even a whole aisle full of gluten-free foods. Check Amazon.com as well to save money on many items.  Look for the GF label if you're unsure if an item contains gluten or not.  Some items that may have hidden gluten are listed HERE.

Remember to start slowly and be patient, it make take 6 months or longer to start to see results in your Rett Girl. Look for less irritability, better mood, attention and focus, more consistent bowel movements, better sleep and clearer skin, but don't expect this all to happen overnight.

What Foods are Gluten Free:
It may surprise you to know that many foods that you are already eating are gluten free and you probably just don't know it. For starters, ALL fresh fruits and veggies are gluten free! Fresh chicken, meat, fish and eggs are also OK for gluten-free diets! For starches: try rice, potatoes and quinoa. Fats are usually naturally gluten free as well - butter, coconut oil and olive oil are all great gluten free options.  If you cook from scratch and use whole food ingredients, going gluten free is easy.  Or, maybe going gluten free will help you to use more whole food ingredients which is great for the whole family!

Some gluten-free snacks include corn tortilla chips and fresh salsa, potato chips and popcorn! Not a bad start right? Many other popular "gluten" foods have a gluten-free counterpart - think cookies, crackers, etc. many of these foods are now being made with gluten-free flour - but remember, just because they're gluten free doesn't mean they are "healthy." These are still "once-in-awhile foods."

Gluten Free Formula and Blended Diets:
For our Rett girls (and boys) that are tube fed a gluten free diet can be as easy as switching formulas.  Some options include Compleat Pediatric by Nestle and Peptamen Junior.  If you are or would like to start making your own homemade blended formula going gluten free is as easy as eating gluten free. All you need is to make sure that your ingredients are either whole gluten free foods or have the GF seal and then you're ready to blend away!  A great resource to check out is the Blended Food Resource Guide.  We strongly urge anyone who may be starting a blended diet to seek the advice of a registered dietitian to make sure that all of your daughters nutritional needs are being met.


Resources:
Thankfully we have LOTS of Rett families who are following a gluten-free diet, and they have helped us set up some great resources to share. We have everything from books to blogs to recipes and even tips on which restaurants cater to a gluten-free diet, and much more. These resources are great for those starting a gluten-free diet or even those who are seasoned gluten-free veterans.

If you are currently using a resource or have a great tip or recipe please share it with us, we would love to expand our resources!

By Bridget MacDonald, RettGirl.org Coordinator
Bridget graduated from Western Michigan University in 1999 with a B.A. in Nutrition.  She worked as a clinical, registered dietitian at William Beaumont Hospital and was a program director at the American Diabetes Association prior to having her daughter, Annie, who is diagnosed with Rett Syndrome.