Rett Girl Blog: June 2014

Sunday, June 15, 2014

Fill My World With Love

Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls.

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.

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie

Superpowers - by Jeremy Springhart

My Princess, My Everyday Light - by Juan Diego Perez
Being Avery's Dad - by Bryan Beeson
She Melts My Heart With a Single Smile - by Phil Covington
Together with Evie - by Frank Morris

Written by: Jon Seeman

I met Kelly, Brooklyn and Boston almost 3 years ago. I was 38 years old and had no idea they would change my life. I found the woman of my dreams and two very precious children. I have the honor and privilege of caring for and loving Brookie and Boston every day. I may not be their biological father but I love the two of them as they are my own.

For those of you who do not know, Kelly's daughter Brooklyn (my Little angel) has Rett Syndrome, and her son Boston (my little bubbers) has a duel diagnosis of Down Syndrome and Autism. I have received compliments from many people saying "what a good person I am for choosing a life with two special needs children." I realize I am being complimented and while it is nice to hear, I feel they are unwarranted. In my heart, I don't feel like I chose this life for myself, I think it chose me. I think it was God's will that Kelly and I met and fell in love.

I am thankful to God that I have been blessed with two amazing children to love.

I am thankful that I get to play outside with them.

I am thankful to be able to tuck them in at night.

I am thankful to snuggle with them in the recliner.

I am thankful to be able to watch Disney channel with Brookie.

I am thankful to have Boston sit In my lap, cuddle and watch the Wiggles on the iPad.

I am thankful to see their amazing smiles when they are happy.

I am thankful to be around to console and love on them when they are hurting or sad.

Many of you know that caring for special needs children is not always easy but I would not trade them for the world (of course we will be throwing one heck of a party when we cure Rett Syndrome!). Boston and Brooklyn are my two little angels and I could not imagine my life without them in it. I love them so so so very much. I might not have helped bring them into this world but they fill MY world with love!

Saturday, June 14, 2014

Together with Evie

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie

Superpowers - by Jeremy Springhart

My Princess, My Everyday Light - by Juan Diego Perez
Being Avery's Dad - by Bryan Beeson
She Melts My Heart With a Single Smile - by Phil Covington

Written by: Frank Morris

I was recently asked if I would be interested in writing a post about my daughter and our relationship. After going back and forth in my head whether I could or would, I decided to give it a try. You need to understand that I am not the writer in my family, that would be my wife. If you have read her blog you would agree that she is quite good at it. For me it is much harder to express my feelings verbally, much less express them in written form.

Three and a half years ago when my daughter was born I was blown away. She was gorgeous! The things that stuck out at the time were her wonderfully long eyelashes and her long graceful little fingers. I thought, "There are the hands of a pianist." As she grew, healthier issues started to appear. First it was the lack of meeting milestones. Then it was hypotonia (low muscle tone), upper respiratory problems, scoliosis, and seizures. For the first couple of years it seemed my beautiful little daughter was inundated with issues after issue. In my mind I couldn't understand what she could have done to deserve the cards she had been dealt. It took two and a half years to learn the cause.

We finally received a diagnosis of Rett Syndrome in February 2013. Now we had a name for the culprit, not that it made anything easier, but at least we had a name.

Like any child, my daughter has her own unique personality. She has a wonderfully bizarre sense of humor. She laughs at things that some people would consider inappropriate. Slapstick humor makes her giggle the most so I often find myself making weird or rude noises to her to laugh. She has the most infections laugh I have ever heard. You can't help smiling when you hear it.

Probably the hardest part for me to see is her frustration. What I wouldn't give to make it easier for her to be able to communicate in a way that alleviates her frustration. The last three and a half years have been hard, scary, wonderful, and joyous all at the same time. She has made me a better person than I was before she came into my life. Where our journey will go...I don't have any idea. What I do know is that we are taking it together and for that I am thankful.

Friday, June 13, 2014

She Melts My Heart With a Single Smile

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie

Superpowers - by Jeremy Springhart

My Princess, My Everyday Light - by Juan Diego Perez
Being Avery's Dad - by Bryan Beeson

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Written by Phil Covington

Hey Dads (and the rest of you who are reading this)! We didn’t ask for the gift of having a daughter with Rett Syndrome, but the gift was given anyway. Rewind that thought, I actually know one amazing dad who chose to adopt a girl with RS despite already having a biological daughter with RS. Some of you are new to the journey, others are well-seasoned. I’ve been on the journey for ten years. What a ride it has been.

Our sweet girl went through what seemed to be every medical test known to mankind before her diagnosis in 2004. I remember thinking that I didn’t even care what the diagnosis was, I just wanted to know. I was relieved after the diagnosis to finally know, but my wife was mourning the life that wouldn’t be the same.

Sweet girl has two older brothers that I can identify with, but the future for my wife and daughter changed forever that day.

I’m a better man because of my daughter and my very compassionate boys will grow to be better men because of their sister. A good bit of me being better has to do with letting go of bitter. What, you ask, may have made me bitter? Well-meaning statements from innocent people that I consider to be ignorant made me bitter.

Please know this…

I don’t want your pity. I just want to be another guy with a great daughter. The great things my daughter does just happen to tie to her progressing toward walking, learning to communicate with her eye-gaze computer, and interacting with her family and friends.
I don’t want to hear that you think I’m an amazing dad because I love my daughter. Think about what you’re implying…do you think I shouldn’t love her?
I’m bothered by you saying that you couldn’t do what my wife and I do to provide for our girl. Really? You think you’d refuse to love her and provide for her needs?
My daughter is eleven years old; please don’t talk to her like she’s a baby. Her inability to speak doesn’t mean she lacks the intellect to interact with you.
And even if you don’t believe in miracles or rapid medical advances, please indulge me as I hope for a cure. Given what my daughter has faced in this life, a little hope goes a long way.

My daughter inspires me to help others, fight through life’s frustrations, and hope for a better tomorrow.

While she’s not begging me to come to her dance recital, I love to hold her and dance about the room.

While she’s not asking me to shoot baskets with her, I love the excitement she gets while sitting beside me on the couch watching a game.

Most of all, I love the way she melts my heart with a single smile. One silly grin makes all the stresses of life less significant.

I hate Rett Syndrome, but I love my sweet girl!

Being Avery's Dad

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie

Superpowers - by Jeremy Springhart
My Princess, My Everyday Light - by Juan Diego Perez

Written by: Bryan Beeson

I was always so excited to become a father and was absolutely thrilled when the first of the four best days of my life occurred in March 2006 with the birth of our daughter Avery Grace. Avery was a happy baby who was normal in every way, and being her dad was a natural and easy transition that I welcomed with open arms.

When Avery was a little over a year old, things took a turn, and we all watched in horror as she slowly drifted away from the social, smiley baby she was, into a withdrawn, isolated toddler in her own world. Avery was diagnosed with Autism before her second birthday, and as the years passed, and her motor and language skills continued to regress, it became evident that perhaps we were dealing with more than just Autism.

Avery was finally diagnosed with Rett Syndrome at the age of seven, though her disability is never what I have seen as her dad. As Avery’s dad, I see my beautiful, hardworking, precious daughter that I love with all of my heart. Avery, as my first born, made me a father, yet she has taught me far more than I could ever teach her. She teaches me how to love unconditionally, and to stay optimistic and hopeful as much as possible. She teaches me to live in the present, and though I worry about her future, she reminds me to l go with the flow and work hard in everything I do, and take nothing for granted. She makes me a better man and a better father to all of my children.

Everything for Avery is hard, but loving her is easy. I hate that Avery will miss out on so much because of what Rett Syndrome has stolen from her, but I am so thankful that she is happy, and I will live my life making sure she is loved and comfortable. I never knew what to expect when it came to being a dad, and it is amazing how easy it is to love someone so much who has so much trouble showing that love in return.

Avery inspires me and everyone who loves her, if they just take the time to know her. I feel honored and blessed that I get to be her dad.

Thursday, June 12, 2014

My Princess - My Everyday Light

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie

Superpowers - by Jeremy Springhart

Written by Juan Diego Perez

What a blessing it is to carry your newborn child. That was my first feeling when I carried my princess Luz Viviana for the first time. I didn't know it at first but she has been my inspiration and strength from the day she was born.

My Luz has been through so much since the day she was born. From meconium aspiration, milestone delay, seizures, to the most recent having a g-tube. This little girl has taught me that there is nothing more important in this life than family. Since the day we found out Luz had Rett Syndrome, we have been closer than ever. Our love towards her has been so big that she sees it in our actions.

I knew I would be her voice. My love, support and dedication has made my princess a strong warrior. Her determination to overcome every obstacle is just amazing. Of course, there are some issues that will never go away, but she will have us here to support her in everything she needs.

There is nothing I wouldn't do for my Luz. I know she will never give up and nothing is impossible for her. Seeing her smile and tap away is enough to keep me strong and continue every single day. My Luz is the light of my heart and soul. Without her everything would be very different.

Wednesday, June 11, 2014

Superpowers

Other blogs this week:

Rockin' Out in Rettville - by Eli Callaway

Inspired by Catherine - by Gordon Christie

Written by Jeremy Springhart

I am the proud father of two wonderful girls. Carly is six and Brooklyn is five. Brooklyn was diagnosed with Rett Syndrome in 2011, on Good Friday. Needless to say, there was nothing good about that Friday. I was told how Brooklyn would lose her ability to walk, talk, use her hands and read like all of the other children. In one very solemn afternoon, I learned all of the terrible things that were to come.

Unfortunately, the doctor overlooked one very important detail about Brooklyn that day. I did not learn it until years later. Brooklyn is gifted.

Brooklyn is not an ordinary child. When her eyes meet yours, there is so much she can tell you. While she would love to be able to speak, she does not need words. With one stare into your eyes, she can tell you whether she feels pain, sadness, happiness or hunger. It is a sort of superpower.

Her stare is not Brooklyn's only superpower. She can also melt your heart with a single smile. There is no hiding it. She is happy. She feels great, and so will you.

Brooklyn has taught me that life is not always fair, and to do the best with what you have. She never gives up. She enjoys life while patiently waiting for a cure.

The scientists are so close to unlocking this puzzle - one defective gene, one dreadful mutation. It might sound naïve, but I know one day Brooklyn will be cured from Rett Syndrome. She will run fast and far. I will have a tough time keeping up with her. So, in the meantime, I am just going to appreciate my time with Brooklyn, and those precious stares and smiles.

Tuesday, June 10, 2014

Inspired by Catherine

Written by Gordon Christie

Catherine was diagnosed with Rett in 2004, at the time the diagnosis came as such a relief. Catherine had been having a tough time getting nutrients from her food and was barely over 20lbs at the time. She was getting her G-Tube installed after going through the feeding via the tube through her nose torture period.

Things went from well she definitely had something different diagnosed every few weeks to becoming involved in the most wonderfully supportive Rett Family of people in New Jersey. I'm generally optimistic about things so I saw all the happiness in the Rett Families we met and was comforted in many ways.

Several bouts of Pneumonia with Catherine turning blue at times accelerated our move to Texas and I was all for a move to somewhere warm. The warm weather re-ignited my desire to run as I used to do before I left Scotland for America in 1996. It wasn't long before Catherine and I were participating in 5K's and Half Marathons. Catherine enjoys running with the wind in her hair and fully expects me to be competing if not for overall top 3 then for at least some kind of age group award. Luckily we have always managed this.

As of this year, I have run for Team Rett in the Boston marathon 4 times, raising a lot of money to be used for clinical Trials. Catherine's running highlight was of course being infamous at the Princess Half Marathon and being hauled off the course after only a few miles, Catherine enjoyed this even more than running.

Catherine never lets me settle with participating in easy races or slacking off while training for such events [I'm sure she talks to me subliminally while I'm running]. When I hit 40 in 2010 I decided that a Marathon would be sufficiently challenging to do. I have since completed 30 and twice been Texas State champion: once in the overall division and once in the over 40's while wearing a pink tutu and a pink cape with Girl Power to Cure badges on it. 2011 was my first 50K though it took me 2 years to finish my first 50 Mile race. Me falling 8 to 10 times on such a trail race was pretty much my normal, fortunately I only ever broke one rib so far. This year I did my first half and full Ironman Triathlons, who would have thunk I could swim after all.

I'm ever so happy that Catherine is in a good spot with her health over the last 12 months and could not ask for more than for that to carry over to the next 12 months. I promised her I would drop 15lbs and become competitive in this triathlon thingy that I'm so new to.

I can't wait to see what crazy things Catherine inspires me to do over the next year.

Monday, June 9, 2014

Rockin' out in Rettville

Written by Eli Callaway

After three boys I was losing hope of fulfilling my wish to have a daughter. The idea of a little girl to "protect." The idea of chasing away boys and one day sending her off into the world. Tea parties, glitter, learning to do hair and nails all of these were yet daydreams. Until my Bliss came to us. Elianna Bliss. My perfect brown eyed angel. My time in Perfectville did not last long.

At not even two months old my Bliss was taken into surgery for herniated uterus and fallopian tube. Everything turned out fine. Slowly oddities crept into her. She was not a good sleeper. She was allergic to cow's milk. Cuddling seemed to frustrate. Most troubling was the awful look she would give to people. She acted as though she wanted to talk and walk. At one year old we were content on moving from Perfectville to HighMaintenanceville. After all, this was my Bliss. She was worth it.

The next six months were a bright flash, and bang. How did we get to Autism Land. A blur of therapy and more therapy. Strange people always trying to help my little girl. My little girl that wouldn't stop screaming. As a Dad, Autism was a challenge to fight. I can do something about this. More therapy, more books, and more blogs. And this entire time my Bliss is slipping further and further away from me. Endless days listening to my beautiful daughter scream. Nothing was working. I had put all my hope into getting out of Autism Land. I was slapped in the face to learn we had misread the signs. Our sign read, “Welcome to Rettville.”

As her regression slowed, my Bliss came out from her shell. During the time that I felt completely helpless as a father, my daughter started to laugh. And continues to laugh a lot. She lights up around people and wants to play. From absolute misery she has given me true bliss. Rettville is not the funnest place. Unlike other places, in Rettville many choices now are easy. Quitting smoking was almost easy. My family is stronger and more compassionate. We are Team Elianna, rocking out in Rettville!