Posted on June 28 2018
Written by Jessica Musler
Brody is a 1-year old kid with cleft lip and palate who loves going to the zoo, being with family and friends, and ANYTHING in water (he’s a water-maniac). He lives in Nebraska with his parents and 2 dogs and is a total mama’s boy. Brody’s mom, Sara, wrote the following about Brody’s condition and their life together.
It was at my 24- week ultrasound appointment they had told me "sometimes in utero things don't go the way we plan, sometimes things happen we just can't understand" -- Brody was going to be born with a cleft lip and (possible) palate. Leaving that appointment I knew two things 1.) This wasn't fair and 2.) I had failed as a mother.
The next week I mourned the loss of my "perfect" child. I unregistered for items on my baby registry that I had heard "cleft lip babies wouldn't be able to use" Google is both the greatest thing of all time and also the worst thing of all time!
By the time I was headed to the hospital for my scheduled induction -- I had coped with the idea of Brody being born differently. I had known two things at this point. 1.) Brody was going to be born with a cleft lip and palate, a very common birth defect that happens in 1 and 600 babies are born with. Most babies born with cleft lip and palates live very typical lives after repair. 2.) It was NOT my fault Brody was going to be born with a cleft lip and (possible) palate. After a very uneventful labor, out comes Brody. The most beautiful, perfect baby of all time. Cleft lip and all. Something that I was so nervous about, so ashamed of, turned out to be the most perfect imperfection I had ever seen.
The next day I posted a picture of Brody to social media. "He is absolutely perfect" "He is so beautiful" "He is so cute" After he was born it never really occurred to me that he was different. I was accepting of him and so was everybody else.
Brody had some tough days ahead in the NICU- something not all cleft lip and palate babies are admitted to. Feeding was a struggle, as it is for a lot of babies born with a cleft lip and palate as there is no suction without the palate closed off. When we finally left the NICU I was excited. I knew that my job as his advocate was just beginning and I was ready to do whatever I needed to do for him. Learning how to change an NG tube was the first on the list. Not all Cleft lip/palate children need an NG tube, Brody was just NOT getting his feeding coordination down. Another thing I get as his mother is "I don't know how you do it?" This is a hard one to answer because I don't think I've done anything special. I think that any decent human would make the effort to be the best parent they could to their child. I did what I had to do for Brody.
With a cleft lip and palate also comes surgeries. Surgeries that you have to hand over your unsuspecting child to a nurse to take to the OR. I'm seasoned in handing Brody over but I will be honest it doesn't get easier.
When it comes to that first year of a child's life every parent is going to find different milestones to celebrate, whether that be sitting up, crawling, or walking. What I found that worked great for us was not comparing Brody to other babies, but instead celebrating things that were specific to him. Hey, we got through his first surgery and recovery without any hiccups!
Now that his cleft lip and palate is repaired I strive to treat him as normal as possible, I still post his picture to my social media accounts, and I still love him just as I did when I first held him.
1) Q: What is your biggest inspiration?
A: Brody is my biggest inspiration. The number one question I get asked when it comes to Brody is "Is he really that happy?" He is! I think it speaks volumes about how tough he truly is. If he can get through all of what he's gone through and still smile, I know that I can too.
2) Q: Who is the person (or people) who has gotten you through the most?
A: We have so many people to be thankful for there isn't just one or two, to put myself and Brody out to the public we've opened the floodgates for people all over the world not only to give us encouragement or advice but to also ask for encouragement or advice.
3) Q: While your child has been going through this condition, what has been the most unexpected and rewarding thing you have experienced?
A: Right now the most rewarding thing about Brody being born with a cleft lip and palate is when I get the opportunity to give advice to another family going through a similar diagnosis. In the future the most rewarding thing will be when Brody understands how much he has always been loved.