Tag Archive | cleft palate

A Great Start

Jan7

What a way to start off the New Year, we had all four girls at our house for New Year’s Eve to play games and just have a good time.

Wait a minute, some of you reading this are probably confused because I have never mentioned having children, so before I go any further into this post let me give you the short version of what all went down last year, well the big stuff anyway.

Dave caught the event on camera and video

Dave caught the event on camera and video

February 2014 – I got engaged! David proposed to me! If you read my last post you already know a little bit about him. 😉

September 2014 – September 13th to be exact, we got married! In the realm of 125 of our closest family and friends we said I do in a beautiful church. With the unity of Dave and I, I gained four daughters! 🙂 We also became home owners!

September 13, 2014

September 13, 2014

November 2014 – Our 12-year-old daughter moved in with us and I’m learning so much from having her here, like how to do sixth grade math again! Haha!

Okay so now that you’re all caught up, let’s get back to it shall we? 😉

Another reason it’s been a great start to the year is because I got “White Bees” in the mail.

With this book comes a story (of course)…

My mom likes to look on Amazon and eBay for cleft related books, not text books, just enjoyable reading books. She’s found a lot more than I realized existed. We each have a couple of children’s books. One book in particular she sent me an e-mail (July 2014) telling me there was a book she thought I would like, entitled “White Bees” by Amy Jo Wilde. I read the synopsis and replied, “I will be buying this soon. Thanks mom :)”. The synopsis (before I go any further): A memoir written by Amy detailing her many surgeries she had to endure as a result of being born with a bilateral cleft-lip and palate. One of her main surgeries happens in high school. It takes you through her trials and triumphs.

July came and went as I was finishing up wedding plans for the wedding so I didn’t buy it right away. Instead my Aunt (my mom’s sister) bought it, read it, and loved it. My aunt then mailed me the book in August/September timeframe. She said I could keep the book :). I set the book aside and worked on wedding details. Then after the wedding came moving and everything that goes along with it.

Finally in mid-December I picked up “White Bees” and within a weekend I was finished with it. I could not put it down! It was such an amazing book and I’m not just saying that because I too have a cleft, it was a beautifully written story. Now I will say because I have a cleft I felt like I could relate with Amy so so much. I felt her pain and her happiness. I laughed, cried, and got mad as she did.

After reading the book, I had to view Amy’s website, I was chomping at the bit to know if she had written anymore books! I found out that while she didn’t have another book, she does have a blog! I saw that you could request a signed copy of “White Bees” from Amy herself. I wrote in hopes that it was truly Amy that was going to read my message. A couple of days went by and Amy Jo Wilde herself e-mailed me back! Let me just tell you I was so excited and honored. I was over the moon when I read what she had written “…Thank you so much for taking the time to write me. Your blog is wonderful, and YOU ARE BEAUTIFUL!!!” Talk about a compliment! She wrote more and then gave the link to where I could purchase the book and get a signed copy.

I let my mom borrow my non-signed copy and I hope she’s almost done reading it so I can discuss the book with her! Hint hint mom, because I know you’re reading this! 😉 Meanwhile, I waited for my book and on New Year’s Day, what should I find in the mail (it must have been in there a day or two, we don’t check the mailbox daily, whoops) but my SIGNED copy of “White Bees”! To say I was ecstatic is an understatement and to know that Amy mentioned me being a “new friend” was so sweet. I definitely have found a friend and role model in her. I know so many cleft kiddos or 20 something clefties that I just adore but it was so encouraging to me to see how positive Amy is and how encouraging she is to so many people. She’s a motivational speaker too! How many of you know I said that’s what I’d really love to be?! It is all just so awe-inspiring. I just had to share this experience with you all!

I highly recommend this book, especially for clefties, cleft parents, and those who know a cleftie but I would recommend to anyone wanting a good book, moreover anyone wanting to really get the vibe of what we deal with when it comes to surgeries, dating, and daily life. https://www.amyjowilde.com

white bees me authographed book white bees cover

Thanks mom and Aunt Angie for being wonderful women to look up to and for suggesting and buying the book for me to read. Thank you Amy for writing your memoir for everyone to read.

Love you all ~ Becca

Loving All the Imperfections

Jan4

When I think of love and acceptance, regarding love I think of John Legend
singing “… ‘Cause all of me loves all of you. Love your curves and all your
edges, all your perfect imperfections.” Since I can remember I have dreamed of
finding my “Prince Charming” and living happily ever after. As I got older,
like most teen girls, I wanted a boyfriend. I wanted someone who liked me
for more than a friend. As my high school days went on with not one
boyfriend I became discouraged thinking there was something wrong with me.
Being female with a cleft I thought for sure it was my speech, my teeth, or
perhaps even my minimal scar.

I started college in August 2005 and began dating, the guys I had
relationships with or went on more than a few dates, for the most part liked
me and didn’t seem to care about my cleft. After finishing up my Bachelor’s
in May 2009 I moved to Oklahoma City to continue working on a job I had been
offered in March 2009. Where I was working it was hard to meet new people
and those friends I had made didn’t have any eligible bachelors to set me up with. I began to
get discouraged. I decided to give online dating a go. Most guys were very
clear that they only wanted one thing or we went on one date and either I
was thinking I didn’t want a second date or they were. This continued for
quite some time until I met my ex. My ex claimed to love my cleft but hated
the noise I made because of it and always tormented me for it. I hated it and the way it made me feel. I realized
the error of my ways and kicked him to the curb and yes there were many more
reasons he was not “the one”. I tried online dating again with no luck. I
finally took pretty much everyone’s advice and just stopped looking. Shortly
after the revelation of stopping the crazy search, Dave came into the
picture.

Dave was someone I had known for a few years but didn’t really
“know”, I knew him from when we used to work together but once he changed
jobs I didn’t ever see or talk to him. So in 2013 (at 26 years old) when he
came into a karaoke bar I was shocked because I knew he had been married. I
found out though that he had gotten a divorce. Anyway, things
took its course and Dave asked me out and the rest is history.
Dave is such an amazing man and I really don’t know what I did to
deserve him. He has so many wonderful qualities. One thing that makes my
heart melt is that he loves me for ME, he loves my cleft scar, my cleft
stories, meeting my cleft friends. He doesn’t care about my one missing
tooth (I have a partial but I don’t always wear it depending on what I eat)
and my noise is not a nuisance to him. I love that he loves every aspect of
what makes me Rebecca and I love Dave for exactly who he is no ifs, ands or
buts about it.

I know you might read this and think that will never happen to you,
you will never find an amazing better half to spend the rest of your life
with, but as I have been told and now know, it will happen. Someone is going
to love your cleft, laugh, smile, worriedness, and chick-fil-a tea lovin’
self.

That being said, before I could let someone else love me fully, I
had to first love myself. I love my cleft and I can manage to cover my scar
if it bothers me too much or not smile in a picture with my mouth open if I
don’t want to show the gap but regardless of my imperfections I love me even when I
criticize myself and that shows through and it showed through to Dave as
well.
If you get one thing from this post, love yourself so you can allow someone to love you. Someone will think you
have perfect imperfections just like John Legend sings about. 😉

Meet and Greet

May23

As a cleft kid, it’s funny to me how growing up I never knew other cleft kids and maybe part of that is because I am from a small town or maybe part of it is that it might not have been as common. Regardless of the reason, I now feel very fortunate for the fellow clefties and even parents of cleft children that I have met.

There have been places where it’s a given to meet clefties or parents with cleft kids and then there are some places where I’ve met clefties or their parents that I might not have thought I would.

The first time I “met” parents of cleft children was in 2001 when I joined a cleft chat group. I enjoyed reading the parent perspectives and I liked that I was able to give a high school cleftie perspective to parents of little ones. Two of those mom’s I have met in person and their families are now my family, at least that’s the way I see it. 🙂

My next cleft related encounter was at a mall. I was at the check-out counter purchasing some clothing when the cashier said “Who’s your doctor?” Not realizing what she meant I looked down at myself, touched my face, and gave her a puzzled look. I’m well endowed in the chest area and have always looked several years younger than I am so I assumed that maybe she thought I got a boob job. To that I chuckled to myself. Then the woman asked, “You have a cleft right?”. It shocked me because my cleft hadn’t even occurred to me, I had become so accustomed to my look that I didn’t always see myself as “different”.

I smiled and said, “Oh yes” but looked at her still confused. I wondered how she knew that. “I have twin boys, one of my boys has a cleft. I feel like I can tell other cleft kids now. Who are your doctors?” She was so open and willing to talk about doctors and surgeries and I was definitely willing to listen, but unfortunately the other costumers cut our conversation short.

Then in college I had three different cleft meetings.

1. I sometimes judge at Regional and State Speech Contests and while at one contest I as well as my sister noticed a boy who we were 99.9% sure had a cleft, but again I’m always wary to go up and ask the person. Luckily, I didn’t have to, the boy and I caught each others eyes and smiled each other. That was all that was needed, the boy introduced himself and indeed confirmed he had a cleft. I was really excited to meet him because like me, he competed in Speech Contests and was obviously a confident individual. 🙂

2. My Junior year of college I moved into an apartment complex and to my surprise one of the girl’s living above me was born with a bilateral cleft-lip and palate. I was so excited to finally meet someone my age born like me, we became friends and still keep in touch via Facebook.

3. During my Junior/Senior years of college I had many visits with my current surgeon. I remember one visit more so than others. I was waiting in the waiting room and I saw a couple with a baby. I wondered if the baby had a cleft as my doctor is a craniofacial surgeon after all. When the mom took her son out of his car seat I realized he indeed had a cleft. I leaned over and said “He’s adorable”. These two words led to a small conversation about what surgery their son would be having and what surgeries I have had and any advice I would give them. That same day, after my appointment with my doctor but before I left the building my Doctor introduced me to another couple with a cleft baby so that they could see a positive outcome of what a cleft child looks like to ease the new parent’s fears.

While working at the job I’m at now (I’ve been there five years) I have had two specific “meetings” with clefties.

1. While out at Old Chicago one afternoon with my co-workers I noticed a rambunctious little girl in the booth next too us. She was bouncing up and down and smiling quite a bit. I noticed she had a cleft. She was an adorable blonde three-year old. I could tell though that her mom was wary of stares. My whole meal I wondered if I should go over and say anything. Just when our group had gotten our checks I decided to be bold and go to the mother. I could tell she was shy but after talking with her and saying hello to her daughter I could tell she was a little more receptive to being open about her daughter having a cleft. Unfortunately we didn’t get to talk long at all but I was glad I at least said hi. However later that day I was kicking myself because I hadn’t given the mother my phone number to contact me. A few weeks went by and then one evening while out at dinner in a neighboring town I saw the same mother, with her daughter and her husband. I thought that it couldn’t have been a coincidence that I was seeing them again. I went over said hello and talked to them for a bit. I then gave the family my contact information and told them that if they ever had any questions or needed any moral support to give me a call.

2. I work with a disability program and one day one of the applications I came across mentioned that the applicant had a cleft. I debated if I should mention to the applicant that I too had a cleft since I had never met her. Well, one day she e-mailed me with some questions and it opened up the opportunity to tell her that I had a cleft as well. We exchanged several e-mails after that, sharing our stories of good and bad experiences. It was such a great thing to get to talk to someone older than me with a cleft. I hope to meet her in person one day.

I now get comments and stories from people all over from all over telling me their stories. It’s a great feeling to know that I’m not the only one out there. You as a cleftie aren’t the only one out there. You as the parent of a cleft child or disabled child are not the only one out there. There are many of us like you, we have the same hopes and dreams and the same fears and hesitations. It so great that through technology we are able to hear from others so that we don’t feel so alone. I hope that I get to meet more of you and hear more of your stories. Please feel free to write me I love hearing from you.

~Rebecca~

Blessings In Disguise

Jul30

Worry, dismay, guilt, love, affection, sympathy…these are just a few of the words that come to the minds of parents of cleft children. “Why” questions come along with all the emotions. The “why” questions come to cleft children as well especially as we get older. We wonder what we did to deserve a birth defect and all that comes along with it. Those of us that believe in God wonder if god loves us.

I am twenty-six years old now and with my age I’ve had plenty of time for pity parties, to scream, cry, think and pray. The outcome of all of this is that my cleft has been a blessing in disguise. I already know that some of you will read that last sentence and think I’m crazy so allow me to explain.

God knows my path and my purpose and he won’t give me more than I can handle, even if I think I’m at my breaking point. Although I’ve had many obstacles because of my cleft, my cleft has given me just as many blessings. The first blessing would be my speech teacher/pathologist Julie. Had I not been born with a cleft I wouldn’t have met Julie. While I know my cleft was the reason I had to have speech therapy for eleven years, it also put Julie in my path. She helped teach me the value of hard work and that persistence pays off, not to mention I did and still do some days want to be a speech pathologist and she’s one of the reason’s why.Friends

The next blessing courtesy of my cleft is the Yahoo! Cleft Chat Group. I joined this group in January 2006. Most of the members of the group are made up of parents who have children with clefts. I gained a lot of insight from them and I tried to share my point of view with them whenever I felt it was relevant to do so. Shortly after I joined the group I began talking to a mom whose daughter had a cleft. The mom’s name is Robbi and her and I became fast friends. Her daughter, Maddie was twelve at the time. We stayed in contact throughout the years and finally in July 2010 I flew to Washington to meet Robbi, Maddie, and the rest of her amazing family. I was able to spend three or four days with them and when I had to say goodbye I cried. It was one experience I won’t forget. I keep trying to go back for another visit but plans change and lack of money sometimes happens, but don’t worry I will return, hopefully sooner rather than later.

The Yahoo! Cleft Chat Group also brought me in contact with Tina. Tina and I began chatting in late 2008. Her daughter was one and a half and had been born with a unilateral cleft lip and palate. In the Summer of 2009 Tina and I had planned to meet in Texas but life happened as it sometimes does and we didn’t get to meet. Tina was rarely on the cleft chat group and I thought maybe I wouldn’t get to speak with her again. Then out of the blue in the early summer of 2010 I received a friend request on Facebook from Tina. I thought to myself “I don’t know any other Tina than the one I already have on my friend’s list”. I had a message from this Tina as well. The title of the message was “is this “MY” Rebecca??” The first few lines of the message made me cry, it said ” I remember you from the cleft yahoo boards. I have always thought you were amazing! I have a STACK of things you wrote that I hope to share with my daughter someday!”.  I was so excited to see that this was the Tina from the cleft chat group! As fate would have it Tina found me because her and I have a mutual friend. This Facebook message lead to many more messages and then talk of finally meeting. Our first meeting was in June 2010 when Ella was just three years old. Since that time I see Tina, Ella, and the rest of their wonderful family two to four times a year. I’ve grown so close to them in fact that my sister usually makes the 3 hour trip with me and even my mom has gotten to meet the family.

You see, if I hadn’t of been born with a cleft I would have never joined the Yahoo! Cleft Chat group and never would have made the lasting friendships that I have. That’s not all, there’s more. When I went to Washington State in 2010 I also had another reason for going and that was Camp Korey.

Camp Korey (founded by Tim Rose) is one the SeriousFun camps. The SeriousFun camps were established by Paul Newman. During the summer several camp sessions are held for children that might not under normal circumstances get to go to a camp or that might be worried how other children will act towards them. At Camp Korey the disability or birth defect is the norm because with sessions like “Friends of the Craniofacial Center” and “Skeletal Dysplasia” the children make friends with kiddos that are going through what they are going through and don’t have to fear that they won’t fit in. I volunteered with the craniofacial kids camp session for the younger bunch. The memories that I made in that one week will last a lifetime as well as some of the friendships. I liked it so much that a year or so ago I applied for a position there, but I didn’t get it and that’s okay, it wasn’t where I am meant to be.

Through having my cleft I’ve met a lot of wonderful people not only through what I’ve mentioned so far but also through Facebook’s CLP Commuters, Tiny Wide Smiles doll clinic, and ClefTees designs. The last thing that I am blessed with courtesy of my cleft is this blog. I wouldn’t be typing this post or giving out information and (hopefully) a few laughs had it not been for my cleft.

I’ve said all of this to say, the cards you have been dealt might not be a winning hand when you start but don’t worry because if you play them right (by following your heart and loving yourself) you will come out a winner. I encourage you to try and see a silver lining, the blessing in disguise.

James 1:2-4 “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. let perseverance finish its work so that you may be mature and complete, not lacking anything.” -NIV

~Becca

Shout Outs – 2nd Edition – ClefTees

Jul17
Designs by ClefTees

Designs by ClefTees

For anyone who is affiliated with clefts you know that surgeries come and surgeries go, but every surgery is important.That being said I just wanted to say that I wish little miss Mia a speedy recovery from her lip revision surgery. Mia is connected to the second person/business shout out, ClefTees. ClefTees was founded by Mia’s mother, Darcie. ClefTees is an iron on business revolved around, you guess it, clefts! 🙂

Darcie makes her own cleft designs and sends the iron ons to customers so they can put them on their own shirts. With sayings like “I Love Wide Smiles” and “Cleft Power” who wouldn’t want to make a million shirts to raise awareness and to show you’re proud of your cleft or child with a cleft.

Another cool thing about this business is the compassion shown by Darcie, through our correspondence and my business with her we have become fast friends and I look forward to the day that we all will finally meet!

That’s what I love about the cleft community, the closeness and camaraderie.

That’s all for this edition of “Shout Outs” but I encourage you to check out ClefTees (link below) designs on Facebook and order and iron on or five!

https://www.facebook.com/#!/pages/ClefTees/234579949924954

Love ClefTees

Love ClefTees

~ Rebecca

Shout Outs – The Cleft Lip & Palate Foundation of Smiles

Jun6
This photo is property of www.cleftsmile.org

This photo is property of http://www.cleftsmile.org

Hello all! From time to time on my blog I will create posts of awareness. This awareness will come in a type of shout out to businesses, surgeons, websites, etc. that I think might be useful to those of you that read my blog.

My first shout out is to The Cleft Lip & Palate Foundation of Smiles or as I know them www.cleftsmile.org

Cleftsmile.org is an excellent resource in educating people on cleft related topics. The foundation can also be found on Facebook and Twitter.

“The vision of the Cleft Lip & Palate Foundation of Smiles  is to provide support for individuals and families with cleft lip and/or palate  and other Craniofacial anomalies” (www.cleftsmile.org, 2013).

I think another amazing fact about this organization is CEO and Founder, Rachel Mancuso is a parent of twin children with clefts so you know that the information that you are receiving is not only beneficial but relatable to those of you parents out there that want/need support.

As you can see from the picture, The Cleft Lip & Palate Foundation of Smiles has all kinds of resources to get their name out to the public and I say kudos to them for that!

Anyway, I hope you all check out The Cleft Lip & Palate Foundation of Smiles website and Facebook page. I know I look to it for information and the Facebook page is a great support and encouragement to me personally.

~Becca

Belief

May14

I know it’s hard sometimes for those of us born with clefts, or for any birth defect, disability or anyone for that matter to feel normal, beautiful, and/or yourself. However, I’m here to tell you to quit those thoughts. I know, I know, you’re thinking “Rebecca don’t you feel like that sometimes at least once in your life?” and yes I feel like that probably more times than I should and I think I could blame some of that on society and some of that in just not believing in myself at times. 

When I feel down in the dumps about myself or my beauty I look to words of wisdom/advice in scriptures, blogs, quotes, wherever it may be. I wanted to share some recent favorites with you all 🙂 I hope you like them 🙂 I got most of them from Pinterest.

ImageImageImageImageImageImageImageImageImageImageImage

 

 

 

~Becca

What is a Cleft?

May13

To kick off Craniofacial Acceptance Week I thought why not start at the base. To accept something one must first know what it is they are accepting. So what is a cleft? 

Webster’s dictionary defines a cleft as “1: a space or opening made by or as if by splitting. or 2: a usually V-shaped indented formation : a hollow between ridges or protuberances”.
 
Now reading this, it makes since as to what a cleft lip/palate is because when you see a child born with a cleft there is an opening in either the lip, palate, or both.
 
However, to be more specific a cleft lip is “a birth defect characterized by one or more clefts in the upper lip resulting from failure of the embryonic parts of the lip to unite” (Webster’s Dictionary). A cleft palate is “a congenital fissure of the roof of the mouth produced by failure of the two maxillae to unite during embryonic development and often associated with cleft lip” (Webster’s Dictionary). http://www.merriam-webster.com/dictionary/cleft+lip?show=0&t=1368498853 
 
I know some of you might have gotten to this point and thought to yourself “I’m sorry, what? That’s a mouthful”. I would say that you aren’t crazy for thinking such things. I like to give the ABC version of in my instance what a bilateral cleft-lip and palate is. 
 
You see, when I was in high school I spoke to an elementary school about my cleft and overcoming obstacles. So how do you explain being born with a cleft to second graders, to kindergartners? My explanation to kiddos or anyone who might not have a clue of what a cleft is fairly simple. When I was in my mother’s belly being formed, a piece didn’t come together, like a missing piece of a puzzle. I had an opening where my mouth was and at the roof (top) of my mouth. Doctors fixed me to make me complete/whole.  Pretty basic huh? 🙂 at least I think so.
 
Although I think my description is a good one (tooting my own horn here) it is always good to see a visual. Am I right? The picture below is so informative when showing children or even adults. 
 Image
P.S. I got the picture from the following website, it is a very informative website in general. http://nursingcrib.com/nursing-notes-reviewer/maternal-child-health/cleft-lip-and-palate/ 
 
~ Becca

Voices

Nov8

You know everyone regardless of their age or gender all has a distinct voice. Some voices are raspy, some voices are high pitched or low like Josh Turner 😉

My voice has its own distinct feature that stems from my cleft-lip and palate. You see, until I was 24 I had a hole in the roof of my mouth. There is a proper term for this “hole” but I don’t want to bore you with all of the specifics.

When I was a little girl I used to sit in front of the tv and watch CMT, when they ONLY played music lol. I would sing along to every song, especially Reba! My dream was to be a singer, however I soon realized that I could barely carry a musical tune. 😦 Who knew! Now my musical talents are left for a small audience of me, myself, and I when I sing at the top of the lungs in the shower. 😉

My voice has “matured” over the years though, at least in my opinion. I used to be shy so I was quiet, and then I became a girl with a loud mouth that wouldn’t shut up, perhaps that’s why I made a great high school cheerleader! Haha.

However, I’ve never really known how my voice sounded to other people, I mean after all I can’t necessarily hear what they hear. That being said, I’ve had a few instances where I have gotten some idea of how some people think I sound.

I work as an HR Specialist and therefore I’m on the phone I would say at least half of my workday. To get an idea of how I “sound” let me give you an example of a conversation. “____ Office this is Rebecca.” “Oh you poor thing you must have a cold, you sound awful” or “Oh no, your allergies are getting to you too huh? Sounds like it.”

Now the first time or two you shrug it off, but after the one hundred and fifty-fifth time (number exaggerated obviously), it’s like “REALLY?” Lol I mean some days I feel A-mazing and then I get that and it’s like “Crap, do I sound like I’m sick?” Most of the time I truly do shrug it off and just say “Yea it’s my allergies” and quite honestly I do have those lovely seasonal allergies. However, more often times than not I just don’t have the heart to tell the person “No, I’m not sick at all!” Lol, there have been a couple of instances where I just laugh and say “No, I’m not sick, I just have a raspy voice.”

My main point with this rant is that we are all unique in our own way maybe by shape, size, facial appearance, or even voice. It’s better to not assume you know what’s going on with a person than to say something that if corrected you might regret, at least that’s my opinion. However, if you do happen to get those instances like mine or similar just shake it off, smile, and remember the person doesn’t know and more than likely they don’t mean to be hurtful.

~Becca~