Best. Job. Ever.

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.

FacebookTwitterGoogle+Pinterest

Conundrum

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

Or a word that describes my current state of mind when having to think about Ella’s next step down this “path” of facial reconstruction. As most of you know, we had Ella’s cleft lip repaired when she was 4 months old and her palate repaired at 10 months old.
I choose to say path surrounded by quotes because I would say this process has been anything but. From the time we found out Ella would be born with a cleft it has been our responsibility to prepare and educate ourselves, with very little guidance.
At my job I am expected to be the expert and provide my clients with a plan that will garner the most successful outcome. I guess I thought that since surgeons have to go through many more years of schooling than myself, that their job expectations would be the same. He would tell us what was best for Ella, lay out the risks and rewards and we would move forward with his recommendations – yet, here we are in the drivers seat.
Don’t get me wrong, we love our surgeon and think he has done an amazing job on Ella’s repair.
[BEFORE                                    |                                    AFTER]

However at this point he will not tell us that Ella needs a surgery and has said that as her parents it’s our decision. To willingly put your child under the knife, especially after seeing them suffer in the past, is a very hard thing to ask a parent to do. I understand that everything surrounding her well-being is our decision, but it would be nice to know what others would do in our situation.

As her parents, we think she looks fantastic and barely see her lip (which I have talked about in the past)- however, I am not dumb and know that others see it very clearly. Her speech continues to get better every day, so how do we know when the time is right?
Do we wait and hope the kids don’t pick on her? What if she looks back and is mad that we didn’t do something sooner? Do we do it now/sometime soon and maybe need to go back in again, causing more unnecessary surgeries? Why can’t people/surgeons make these decisions for me? Right or wrong – at least I could blame someone else for the outcome! 
I think the moral of the story is ….no matter what, parenting is HARD. When I first found out I was pregnant a very dear friend of mine said, “Congratulations – now you can f#ck ‘em up in your own special way.”

In times like these, i have to tell myself that no matter what decisions we make and how hard we try to make Ella’s life perfect – she may hate us anyways, so we’ll do our best and cross our fingers!

FacebookTwitterGoogle+Pinterest

Who decides what "art" is?

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.

FacebookTwitterGoogle+Pinterest

Funny Kid

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!”

FacebookTwitterGoogle+Pinterest

Baby Mine

When Ella came into this world I was overjoyed with excitement for this beautiful little girl, but at the same time felt a tad slighted by the uphill battle we would inevitably face.

For those that know me, you know I LOVE music and it has definitely helped to get me through some challenging times in life. From the day Ella was born I have sang her the same song every night before she goes to sleep. Initially it was something that I enjoyed and made me feel better, but now that Ella is getting older it’s become something that we both love. Every night after we read our stories and tuck all of her friends into bed she asks, “Baby song?”

She is referring to Baby Mine from Dumbo. I don’t remember watching this movie as a child
(I have no memory), but I do know as an adult I love it and it’s pretty deep for a Disney film! 

I prefer this version (video unrelated) because in the word’s of JL, “that Alison sure can sing!”
The lyrics of the song really are absolutely perfect for Ella:
“If they knew sweet little you
They’d end up loving you too.”

Like me, Ella loves music too. She loves to sing and dance to almost anything. Lately she has started to sing along during our night time concerts! The first time it happened I could barely contain my laughter and continue to sing on. I mean, this isn’t a typical nursery song that 2 year olds sing along to. It is so adorable that I decided I had to get it on tape and share.

I REALLY can’t believe I am going to put my voice online, but Ella is so sweet it’s truly worth it.

Ella – always remember to “let those eyes sparkle and shine.” ♥ momma 

FacebookTwitterGoogle+Pinterest