On November 26th Ella will be 3 years old.

When we found out we were expecting our first baby – a girl to be born with a cleft lip and palate, we were terrified and began to prepare for the worst. Then Ella came and she was amazing. She was so beautiful, resilient and stronger than we could ever imagine.

Our first surgery to repair her lip was easy, as easy as handing over your 4 month old can be, but we didn’t have any real issues with feeding or restraining her from touching her face. Our second surgery to repair her palate was pretty hard, but when looking at all the issues most cleft kids face, we felt blessed.

We didn’t have weight gain issues. No hearing loss. Speech for the most part, was on track. Learning was never an issue, she was too smart for her own good and she definitely didn’t have issues with projecting sound! We were defying all the things that most parents forewarn you about. How lucky!

Shortly after Ella was born, Joe’s aunt Bonnie was kind enough to have her friend Lori send us a letter about her daughter Myah’s journey. She too, was born with a cleft lip and palate and was really the only child/parent resource that we had at that time. She wrote about all of Myah’s surgeries and what they experienced and for the most she made me feel like everything was going to be fine. However, she also said that when Myah was 3 years old (middle photo) she started to say she didn’t like her “puffy lip.” I remember feeling terribly sad when I read that. How can a 3 year old know what vanity is? How can they be self-conscious at such a young age?

I haven’t seen that letter in over two years. Why would I need it? That would never happen to us. We defy odds. Ella is very confident. In fact, every morning after she is dressed she looks in the mirror, spins and says, “I bootiful.”

Until now. Tonight while putting Ella to bed I noticed she was pulling on her lip. I asked if something was bothering her and she replied, “It won’t come off.” I didn’t know what she meant so I asked once more. Again, she pulled on the extra flap of skin on her lip, an imperfection from her lip repair, and said “I don’t like it on my lip.”

Joe and I have been debating on when it’s the right time to have another surgery for quite some time, so I asked if she wanted mommy & daddy to fix it and she said, “Yeah. And my silly nose too.”

Worst. Feeling. Ever. I could have never been prepared for something like this. I couldn’t believe Lori’s story that Myah was noticing things at such a young age and yet, here we are.

Is Ella’s cleft noticeable? Yes, of course! It’s hard for Joe and I to see it, because we only see our beautiful little girl, but we know it’s more obvious for other non-biased parties.

On one hand this makes our surgery decision much easier, but on the other hand it all goes back to my theory that you can try to raise your kids the best you can, but parenting is hard and there are no guarantees!

Life is busy, but more importantly it’s short and unfortunately sometimes I fall victim to just going with the flow and forgetting about what really matters.

This past Friday Ella decided she wanted to spend a week with Grandma and Grandpa and set off for a fun-filled vacation…leaving us in the dust. At first I thought it was a great opportunity for Joe and I to get stuff done; we have a lot of household projects to be completed, a wedding to be planned and it would be kind of nice to remember what a social life together is like – which is why we agreed to ship her off.

The first couple of days were fine. We kept busy by hitting up a good ‘ole Wisconsin fish fry and then followed it with date night the next day. It was so nice to do things together and not have to worry about the logistics of lining up a babysitter.

Then Monday came, which is when we usually settle into our normal routine, and Ella’s absence became glaringly obvious. We had no alarm clock to wake us up by screaming “Mom come get me” at the top of her lungs, we had all these tiny clothes but no one to wrestle them onto and we were both able to shower and still get to work on time. Nice, right?

Wrong. Turns out I hated not having Ella here to argue with in the morning. I have actually become extremely skilled in putting her hair up while moving around the entire house and I kind of like being late to work (the showering was nice though).

Here’s the deal – sometimes handling Ella everyday is challenging and I get frustrated with her, but that’s what makes it so much more rewarding. After not having her for a week I am reminded that being Ella’s mom truly is the best.job.ever!

<—So happy to have my family back again.

co·nun·drum/kəˈnəndrəm/Noun
A confusing and difficult problem or question.

Don’t get me wrong, we love our surgeon and think he has done an amazing job on Ella’s repair.
[BEFORE                                    |                                    AFTER]

This has been a big week for our Cleft Awareness Foundation and now that things are starting to settle back down I wanted to take a moment to look back on the positive that came from it all.

Currently we have a network of around 1,500 people built through Facebook. My goal is to offer news on a daily basis that for the most part includes: uplifting & inspirational stories, promotion of good causes, before/after photos, cleft resources, support, life conversation, etc. Thanks to New York Magazine, this past week took a different turn.

The magazine featured a contest where they asked designers, illustrators and cartoonists to give Lady Gaga a shocking new look that could top her recent meat dress. One artist, Tim Hensley, chose to draw her with a cleft lip to promote universal tolerance.

I have chose to not post the photo here, but when I initially saw it I was intrigued. I wanted to know more about the artist and why he chose to draw her in that manner. I assumed he had a cleft background and was an advocate for the cause.

I was hesitant to post the photo on the CA Facebook page, but felt it was important to get others feedback. Then the state of panic set in. Within 20 minutes there were 50+ comments and most were very angry. Some were even mad at me for sharing such an ignorant photo with a group that works so hard to move forward and change perceptions.

Since I was acting as a moderator I remained neutral and prayed that people knew I wasn’t endorsing the magazine, artist or photo, but was simply letting others know it existed. Some people demanded that I take it down, some people were positive and hoped it was created with the right reasons and just “missed the mark.”

After further examining the 100+ comments I found something very interesting. Almost ALL of the people who were born with clefts and chose to comment came across as strong, positive, tolerant, and dare I say, forgiving human beings.
I think that is the most amazing testament to the beautiful people, both inside and out, these cleft kids are!!

Many things transpired after that and it wasn’t all pretty, but in the end we were able to get a major magazine to issue an apology:
After consulting with the artist Tim Hensley we’ve decided to take down his drawing and he is donating his fee to a cleft palate charity. We offer our sincere apologies to the community.

Through the help of other organizations we were able to get some real media coverage in Atlanta! To view the news clip click here.

This whole ordeal has been amazing; to witness not only the power of social media, but more importantly what can be accomplished through uniting and taking a stand. I am proud to be a cleft mommy and to be surrounded by such strong, beautiful people.

“Be the change you want to see in the world.”  – Gandhi

Note: I am excited to get back to sharing positive and exciting news via our Foundation and I would NEVER want a career in Public Relations! That being said, I am still trying to reach out to the artist in hopes of learning more about why this image was created. Stay tuned.

Everyone always tells us how funny Ella is and we usually say something like, “Yeah, she thinks she’s funny!” but the truth of the matter is – she is really, really funny. There are so many times I have to turn away when she is doing something naughty so that I don’t laugh and encourage her.

Let’s take today for example. This week is Spirit Week at daycare and today was crazy hat/hair day. Ella decided that she would partake in the hat portion, so we got dressed and of course had to take pictures. When I asked her to smile she began posing as if she had just walked off of the runway. I mean, yes I know those girls/posers that strike the same move whenever a camera appears, but that is not me – so where in the world is she learning this stuff. Ceases to amaze me.
(The first photo is definitely a product of “Naughty Aunty Merl.”)

Then tonight as we sat down to eat dinner she proceeded to tell her daddy that she didn’t like him, which was funny – but Joe didn’t seem to think so. I guess… I didn’t think it was so funny when she told me she was going to shop for a new mommy while I am gone traveling this week.

That dinner story really doesn’t compare to yesterdays lunch though. We had decided to sit down to eat a quick lunch and Joe made himself a hotdog. Since we were out of ketchup he settled for mustard, but he decorated it exactly the same as the hot dog on the bottle, complete with zig zags and all. As he brought it over to show Ella she was amazed and when he showed her the bottle of mustard she said in awe, “Oh my God!” I wish I had it on video because her face and voice was amazing!

Not only is Ella funny, but she also has an amazing memory. A few weeks ago she went to Grandma & Grandpa Stevenson’s on a Thursday afternoon after swimming lessons. This past Thursday when Ella got out of bed I asked if she was excited for swimming that day. Of course she said she was, but she followed it up with, “Grandma & Grandpa Bobs?” I tried to explain that she can’t go to Grandma & Grandpa’s every Thursday and in the middle of my sentence, before I could even finish – she looked at me and with a swirl of her pointer finger said, “Pack it up! Grandpa Bob pick me up.” Her tone of voice was as if she was saying, “Woman – grab my bags!”