Cleft of the Matter

It's all about perspective sometimes.

As you may know, when I was pregnant with Lucy we found out at my 20-week ultrasound that she had a cleft lip. I still remember the moment that they told Jeff and I that our baby had a cleft. And I am now thoroughly embarrassed and ashamed of how superficial my initial reaction was. I was concerned about the medical aspect, sure, but I was DEVASTATED over the physical aspect. I felt vain and superficial, but I just couldn't picture a baby with a flaw. MY baby with THIS flaw. To put it simply... I was FREAKED out.

After a follow up ultrasound and confirmation, we slowly started wrapping our minds around the "cleft of the matter." The cleft was a fact. It was there, and there was no changing that. We opted out of the genetic testing because it wasn't going to change anything we did, and we focused on educating ourselves on what we knew for sure. We were going to be parents of a cleft baby, a sweet, innocent little cleft baby. Do you know a cleft is actually a more "common" birth defect? I connected with so many parents online that were going through what we were going through! And as we started hearing other stories and learning from their experiences... it became easier. We gained acceptance.

Two cool things I learned about the community of people raising cleft babies during my pregnancy is that, (1) they are a big family, sharing tools and tips. I connected with many, many of them in an online group on www.babycenter.com (thank goodness for the internet!). (2) there are SO MANY resources here for cleft babies. We are so lucky to have wonderful doctors and programs here in the United States to support families going through this challenge. By far, though, the best part about these families I connected with? They saw so far beyond the cleft that they hardly saw the cleft at all. Their love for their child was evident no matter how severe the cleft was or how challenging their cleft-related issues were!

Then there was Lucy's cleft. When we met Lucy, her beauty was still very evident despite this "flaw." In fact (I've said it before and i'll say it again), the cleft was actually a major part of her beauty and uniqueness. It gave her whimsy and charm. It made her "Lucy." If the cleft had been an isolated issue, it would have been nothing. NOTHING. Totally fixable, doable.

Of course, in Lucy's case the cleft was related to her Trisomy 13 condition. It wasn't "just" the cleft. When we started realizing there was more to her condition, our focus changed significantly. I have learned a lot about Trisomy 13 since her birth. At this point I have actually even gotten the amazing opportunity to connect with another mother of a Trisomy 13 baby here locally. (The condition is quite rare, so the fact that I've connected with someone this close is a huge blessing!) And what I've realized in thinking back on all this is... I can't believe that we were that worried about the cleft!

I just keep remembering how TRAUMATIC it felt when we received the news of the cleft in our ultrasound. We were broken down and started having pity for ourselves over what our child (and whole family) would have to go through with surgeries, possible feeding issues, developmental delays, emotional and psychological issues, etc. I even worried that I would not love my child the same - that I would feel different somehow. Wow, now I'd give anything in the whole wide world for our sweet little cleft baby. Anything for it to have been a condition that we could have fixed. How we wish it was "just" a cleft.

And, shame on me.

How could I have questioned for a moment that I wouldn't love this baby the same?

I did.

I do.

I will.

Always.