Cleft Lip & Palate Books

It’s hard to keep track of all the helpful & supportive cleft lip & palate books for both children and parents. Therefore we compiled a brief list. Which are your favorites?

Top – From left to right.
1. Wonder – R.J. Palacio
2. Lippy the Lion – Joanne Green
3. Your Cleft-Affected Child – Carrie Gruman-Trinkner

Bottom – From left to right.
4. Cleft Talk for Kids – Melissa Johnston-Burnham
5. Totally Normal – Paul Little
6. A Special Smile – Julie Graham

Top – From left to right.
1. Children with Cleft Lip and PalateMary A. Hardin-Jones, Kathy L. Chapman, Nancy J. Scherer 
2. First Place – Kate Gaynor
3. I Love You Now, I Loved You Then – Kate Isles

Bottom – From left to right.
4. Katie’s Dream – Mariette Vermeylen-Nuyts
5. Words in the Dust – Trent Reedy
6. Comprehensive Cleft Care, Family Edition – Joseph Losee

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Embarrassment

Embarrassment is an interesting and uncomfortable thing. The bad news is that I endured enough of it as a kid, but the good news is that it was so long ago that I can only remember it from photos. It also strengthened me to a point that I rarely let those types of things bother me. While I’m grateful that it now takes a lot to turn my cheeks pink, I still don’t want my kids to have to feel embarrassed by anything – especially things that are out of their control.

I worried about Ella starting school. It’s been a month now & when I ask how things are going, she barely says a thing. One night she mentioned that some kids were mean to her & my heart sunk. After some conversation I learned that some of the older kids were picking on her after school. I try not to jump to the worst-case scenario & instead ask open-ended questions. As I prodded for more information I realized that they were just taunting her for being the “little kid.” Whew – we dodged a bullet! While I was relieved, I also knew it would only be a matter of time.

That time came last week. Just like usual at bedtime I asked if things were going okay, but instead of the normal silence she said, “mom can I tell you something?” Again my heart sunk. I think I stopped breathing. She went on, “some of the kids ask me what happened to my lip.” I replied, “well, what do you tell them?” She went on, “I told one girl that I was born with a cleft lip & palate and my lip used to be open (as she tugs her lip up) and this mark is from my surgery.”

Screen Shot 2014-10-06 at 9.45.36 PMMy heart swelled with pride and then it just as quickly filled with sadness. She then said, “but i just tell the other kids that I don’t want to talk about it.” I asked her why not and she said the words that crushed me. “Because it’s embarrassing!”

Embarrassed. My little spitfire child! With a larger than life personality and more spunk than I even thought humanly possible. All this time I had hoped that all those characteristics that sometime drive me mad, would also be her life vest and keep her afloat during a time that is critical in shaping who she becomes. And yet here we are, only one month into starting school and she has already withered and caved.

I tried to explain that she has nothing to be embarrassed about and that when asked, she could use the same response she shared with her friend – but she said she’d rather just ignore it. I’m okay with that approach, but only if she’s truly able to block it out with impact, which is definitely not the case. I offered to come and talk to the school but I think the thought of that embarrasses her even more.

At this point, I don’t know how to help her and that damn near kills me. I hope that if we keep instilling confidence and reassure her that she is perfect in every way (we’re not talking about behavior) that she will be able to work her way through this and come out stronger – making these moments a distant memory. If not, I’ll have to go to school and kick some ass!

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May…be I Should Write

It’s already May and since I missed all of April, I should probably write! There’s plenty of material so now it’s just deciding what’s most worthy.

This past weekend we were fortunate enough to participate in our third March of Dimes: March for Babies on behalf of The Cleft Awareness Foundation. In years past the weather has been awful, but this year Mother Nature graced us with some rare sunshine making the day absolutely beautiful. Through the support and generosity of our friends & family we were able to raise $2,000 and we had 18 walkers on our team! We look forward to this event for years to come.

Picture 16

The walk always falls on Mother’s Day weekend, which in the past, has always seemed really inconvenient. Of course I’d like to be able to spend that day with my mom & grandma and this event prevents me from doing that. It wasn’t until this year that I finally realized just how perfect the timing actually is. If it weren’t for Ella, I might not even be a mom at this point in my life and we’d definitely not be participating in the March of Dimes walk. In fact there are a lot of things that wouldn’t exist if there were no Ella!

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Oh Hey, 2014!

I have no idea how it happened, but a new year is upon us. That’s right, goodbye 2013 and hello 2014. Not only is it a new year, but we’re already more than halfway through January!

I haven’t wrote in a while, for a lot of reasons really. A lot of it has been due to writer’s block, some of it has been a lack of time, but it’s definitely not because I have nothing to say (cue the sarcastic comments). I could write a 2013 review or a positive, goal-filled outlook for 2014. I could share the story of Ella opening her Christmas gifts early or her amazing opportunity to be on television for Cleft Awareness. I could write about the fact that Will is no longer a baby and has an insane ability to repeat everything we say – I’m telling you, the kid’s a parrot! Let’s not forget our annual Packer outing, New Years Eve festivities and of course there are always a lot of home improvement projects happening.

For the sake of keeping it interesting, I’m going to talk about the most important things – our kids. We’ll start with Will first. For some reason from the time he was born, Will was nicknamed by everyone as “Baby Will.” Although the nickname has held, sadly he is no longer a baby. Almost 18 months already, he is doing new things daily. As I mentioned above, he talks all the time – it’s crazy. His vocabulary probably consists of 40 words and while it’s not always clear, he really has no limits. He says the usual things like, momma, dadda, ball, puppy, no-no, etc. He also says things less typical like, football, touchdown, cheese, adios, etc. The more impressive thing is that he says things in context – “thank you” when he’s given something he’s asked for, or “get down” as he’s climbing on all the furniture in the house.

1512597_10100634258613046_1604147836_nHis actions are no longer by chance, but definitely intentional. He’s a lot like Ella, but even more devious. He knows the difference from right and wrong, but that doesn’t mean he makes the right choice. I might be biased, but he’s extremely talented. It’s made me think a lot about gender differences, but he somehow has this natural ability to pick up a ball and accurately whip it at your head. He is still a picky little eater and definitely needs to work on his short temper!

Now onto Ella. I already spoiled the end of the story, but it’s still a worthy of documenting (to share with her when she has kids of her own someday)! We always set up our tree in early December and place the wrapped presents underneath as they are purchased. We’ve never had a problem in the past and it shouldn’t be all that tempting since we don’t even wait until Christmas to open (due to traveling to our families). This year should have been even easier since I didn’t wrap and place the presents until later than normal. Almost everyday after daycare she would ask to open, “just one” gift from the under the tree. Each time she got the same answer, “absolutely not” or “don’t even think about it!”

Regardless of all of those things, the temptation was far too much for her and she caved. On December 14th, we woke to find that not only had she had opened EVERY.SINGLE.GIFT from under the tree, she also found the stocking stuffers I had hidden in our spare bedroom. The scene was shocking and surreal! I was honestly surprised because behavior-wise, she was on a good run, she had been a really good girl. Just a few days prior during our bedtime conversations she said, “it’s ok if Santa can’t bring me what I asked for, maybe he’ll just bring me something small. I just cannot believe I’m on the nice list!”

Thank goodness she can read, that at least prevented her from unwrapping all of Will’s gift too. Her actions required a punishment that would hopefully set the tone for years to come. I thought about re-wrapping the gifts, but she was excited to help with that task and I didn’t want to do it again. We ended up settling on her gifts sitting under the tree, unwrapped to see everyday, but she wasn’t allowed to play with them. I also took her to Build-a-Bear to make an animal that we then donated to Toys for Tots. She did a pretty good job with both of those punishments, but the hardest part was when Will opened his gifts. She had to sit patiently and not help or touch a thing the entire time he opened. It took him about 30 minutes and drove her (and us) a little insane! The final punishment was in her stocking, which we opened after we returned home from the holiday travel. Will’s was full of gifts from Santa, he even had a gift under the tree. Ella’s stocking was empty – except for a note in the shape of a heart. It read, “Dear Ella, try harder next year and remember, don’t open your gifts until Christmas! Love, Santa.” She was sad, but I think the point was made. If she opens her gifts ahead of time again, she’s moving in with grandma & grandpa.

Now onto better things from Ella. Our friend Emmy Fink presented us with an amazing opportunity to share Ella’s story of Cleft Awareness on the CW Network here in Madison. When I first asked Ella if she was interested she was a bit hesitant, but then quickly turned into a diva – “I don’t want you to go on t.v. with me, I want to go myself – just like my last surgery!” I had to explain that it was important for a parent to tell their story too, so she said, “okay mom, just the girls will go this time. The next time I’m on t.v. I’ll pick dad!” That kid.

When people started to hear about it, I think they expected her performance to be loud and full of personality, just like her. In reality she was a little nervous and pretty reserved, but I couldn’t be prouder of her and the outcome! Hopefully as she gets older she realize what an opportunity it was.

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Downplay Dilemma

Joe & I are notoriously bad at downplaying pretty much all things in life – the seriousness of our kids surgeries, the responsibility of our jobs, the amount of juggling it requires to keep things moving. This means that we typically talk less about the “things” in our life; we’d never want anyone to think we were tooting our own horn! While this approach has worked for us in the past, recently I have given it a bit more thought and the negative impact it might have.

As most of you know, both of our kiddo’s just went through major surgery. Leading up to the big events, we didn’t talk about it all that much and when asked we simply responded, “they’ll be fine.” Now that we’re past both surgeries, the kids are in fact, fine! However, due to the lack of details shared, those who don’t experience major events such as these just might start to think that it’s easy. I’m okay with people thinking it’s easy on us, but I don’t want to discredit what our kids have endured!

The other day a friend asked if this would be Ella’s last surgery.  The simple answer is no, but the real answer is that a cleft lip & palate means the possibility of numerous surgeries as she continues to grow. Most people thought that we would have the first two surgeries in infancy and then move onto living our “normal” life. They don’t realize all of the other things impacted by her defect – speech, hearing, eating, dental, emotional – and that’s the best case scenario!

For this reason, we started the Cleft Awareness Foundation to create a support network for Ella and ourselves and to educate those around us about what a cleft lip and palate means. We’ve done a great job at the first portion of that goal. We’ve built a network of 3,500 + like-minded people across the world to share stories, get advice and lean on. However our natural desire to downplay things has caused a dilemma and forced us to fall short in our second goal.

A lot of important people in our life don’t even know about Cleft Awareness! Over the past few years I have shared a lot of helpful things to better educate the cleft community, but I forgot to share that same information with the people closest to Ella! For that reason, I am going to go against the grain and get in a shameless plug —if you are interested in learning more about cleft lip & palate, please follow us on Facebook by clicking here! As a bonus, you’ll get to see a lot of pictures of other strong & beautiful kiddo’s who experience the same things everyday!

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