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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Boggling Bravery

Ella went into surgery around 7:45 a.m. this morning and as I sit here patiently (ha!) waiting for the next few hours, I cannot get over how brave that little girl is. It’s honestly mind boggling.

For those of you who have ever experienced surgery, especially for little kids, it’s typical for one parent to accompany them into the OR as they are put under. We have always chose to not go in because we felt it would be easier for both the kiddo’s and quite honestly, easier on us. Regardless of that decision, it’s normal for you to walk with the team down to the OR and then pass off your precious bundles to the medical staff.

Even though we’ve let Ella go in alone in the past, I thought today might be different since she’s older now and more aware of the situation. When the children’s coordinator (which is genius might I add) came in, I asked if she would like either Joe or myself to go with her into surgery. She quickly replied that she wanted to go alone. I wasn’t surprised but I thought she might change her mind. As it became time to make the trek to the OR we all prepared to walk together and she promptly said she wanted to go alone. I explained that she could go into surgery by herself but we’d like to walk with her. She caved and let us all go with.

As we walked down she was pretty quiet so I thought she might be starting to second guess her decisions. When we got to the dreaded double doors she met her nurses and it was time for us to part ways. As I went to give her a hug I could have sworn she was going to freak out at the last minute and instead she pushed me away mid-hug and was ready to go!

While I’m so proud of her and impressed by her courage, I just can’t believe there wasn’t a second in her mind that she might have wanted some support from her parents. Joe says it’s because she doesn’t fully know what’s going on, but I completely disagree. We have talked about this surgery for the last 6 months. She knows in depth everything that’s going to happen, right down to the scalpel. Even IF she didn’t realize the extent of what was happening, she doesn’t know a single person in that terrifying room. As someone who’s never personally experienced surgery, the OR is intimidating space for me and I’m an adult.

I started this blog to document our lives and I hope when Ella is big enough to read this she will look back a this post and know that she is my hero. She is by far the bravest, most courageous little person I have ever met. She is going to do great things and conquer the world!
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Surgery Sucks

Sorry for the pessimistic title, but it  really does. Surgery is the worst! While we successfully made it through Will’s surgery last week, it hasn’t changed my outlook on surgery as a whole.

Ella’s surgery is Thursday morning. Due to her cleft lip & palate, she’ll have lip & nose revision, palate fistula repair, dental work and ear tubes. Her surgeon estimates she’ll be under anesthesia for around 5 hours and recovery could take up to 2 weeks! We’ll get the call tomorrow night to inform us of what time we need to report to the hospital and when she needs to stop eating/drinking. It’s been such a long time since she’s undergone a major surgery, that I’m out of practice.

The bigger issue is that she’s now big enough to be aware of what’s going on, which means she asks a ton of questions. We are extremely open and honest with her so when she asks things like, “will they cut my face?” the answers become very challenging. I’m happy she’s talking about it and I think Will’s surgery has helped her to be better prepared, but it breaks my heart to know she’s so little and has to face surgeries like this for a large portion of her life.

When we went through her lip repair at 4 months we worried, but at that time she hadn’t had the opportunity to fully showcase her enormous personality and we were lucky that she bounced back quickly. By the time she was 10 months and undergoing her palate repair, we really worried that the surgery might change her personality. We worried that it might change who she was, it might dim her light. For a week after the surgery, she didn’t smile, she didn’t giggle and she was a defeated little girl.

I do not want to go through that ever again. That was the worst feeling in the world. Luckily her bright, shining star returned, but the thought of losing a piece of the child we love so much is terrifying. The risk of surgery is a very dangerous thing, but as a mother, watching your little one in pain during recovery is the most helpless feeling. If only we could trade places!
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Time Stand Still

Yesterday my baby turned 1. While it’s an amazing thing to watch your children grow – it was a tough day for me. I wish I could find a way to make time stand still. I love this age.

Will learns something new every day. He smiles, laughs and squeals all the time – just to get a bit of attention. He’s on the move, crawling everywhere – even up the steps (all the time)!
He still eats like a beast, but now it includes solids too! He loves pretty much everything, especially blueberries. He thinks it’s hilarious to throw his food on the floor whenever he feels like it. The dogs don’t seem to mind, but I’m not a huge fan of the ants he’s attracting as well.

I’m currently his favorite person on Earth. I wish that would last forever. He loves to play with me, tackle me, snuggle with me – really just anything that involves me. I’m sure I’ll want to pay great amounts of money for that attention in 12 years.

While his birthday was a bit sad, we had a great time at the zoo. The weather was beautiful and the animals were at their finest. We were able to see the chimps playing up close and personal, the sea lions preparing to be fed and the tiger bathing himself. While checking out the giraffes the zookeeper randomly chose us to go back to feed them. It was the coolest experience and both kiddo’s loved it. I knew they had long black tongues, but I did not know they were that soft. I was expecting something much more coarse!

After we finished the zoo, we returned home for some cake. I thought Will loved blueberries, but it stands no chance in comparison to cake. He ate every last bite and was so full of sugar that he was up til 10 p.m.
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