Our cleft journey started the same as everyone else’s. The fear and heart ache was soul crushing, the unknown was mind numbing. I think every parent of a child born with a cleft or craniofacial imperfection runs the same emotional gamete. You question everything, your lifestyle, your choices, your faith, and you wonder what did I do wrong. Why does my child deserve this? It is absolutely devastating to hear someone tell you that a child you have wanted for so long, this perfect little addition to your family, isn’t perfect.
A beautiful, selfless woman gave me the greatest gift I could have ever received; her child. When our birth mother, Grace, was around 24 weeks she came to me and sat at my kitchen table with tears streaming down her cheek. She had just had an ultrasound and I was so excited to see pictures of my sweet girl. I noticed the tears in her eyes and that’s when I knew my girl was not okay, something was wrong. Our daughter was diagnosed in utero as having a complete cleft of the lip and palate. The doctor wasn’t very promising and told us to plan for major struggles. Feeding was obviously the biggest concern and we were told it was going to be challenging and to be prepared. This wasn’t going to be easy. That night Grace and I cried together for hours wondering how challenging it was going to be to not only navigate an open adoption, but to overcome this new challenge.
I was devastated! I put on a good face and I told myself it was okay, but secretly, I had no idea what I was going to do. And, I still needed to tell me husband who was away on business. I picked up the phone and dialed the numbers, my voice was shaking, and he knew immediately, something wasn’t right. When I told him the news I kept waiting for him to say we don’t have the money or the time necessary to handle a child with a “special need”. My husband replied: “Well, if that baby was inside of you we wouldn’t have any choice but to deal with it, so I don’t see where it’s any different now”. I had never been more proud of him than I was in that moment and I knew that it may not be the best situation, but for us, our baby was perfect.
Our sweet Emmy arrived six weeks early, and to our delight she was blessed with an incomplete, left unilateral cleft to the lip. She was beautiful! My husband and I were in love immediately and I knew at that moment our family was complete! Emmy is now five months old and is five days away from her lip repair. She is absolutely stunning and I would never trade her journey, our journey, for a different path! This is our story of perfection in an imperfect world!
For parents or loved ones facing a similar path, this is my advice:
-Pray. Have faith. Look unto whatever higher power you believe in and trust that this journey has been placed with you for a reason, because it has! Someone, somewhere, greater than all of us knew you could handle this. And you will, you will rock it!
-Don’t blame yourself. Don’t blame your choices, don’t blame your lifestyle, don’t punish yourself! You didn’t cause this, and you can’t change it, but you can be strong and use every available resource to make it better.
-Do NOT apologize for your emotions. It is okay to be hurt, disappointed, devastated. But it is also okay to love and love unconditionally and see more than a wide smile or an imperfection. It is okay to see a happy, healthy, perfect baby! Your baby is perfect
-Don’t be afraid to tell people to buzz off. This is what I have struggled with the most. When in public, people can be rude, and some people are beyond “teaching”. I always try to educate people and explain that it really isn’t a big deal, but some people will just be rude. Don’t waste your energy, excuse yourself and walk away. You owe NO ONE an explanation, and don’t apologize for walking away!
-Lastly, follow your heart. If something does not feel right, listen to your instincts. Our first adventures with our first cleft team just didn’t seem right. I would come home and cry. Things just didn’t seem to be moving like I thought they should and everything was a struggle. No one had answers. I trusted my instincts and made calls, investigated, researched, and I was right. Things weren’t going the way they should have been and I found a new team and it was like our whole world was readjusted and all the pieces fell in place. So listen to yourself, you know more than you think, and you are stronger than you will ever believe. Trust yourself above all else.
The Cleft Palate Foundation will be an invaluable resource to you and your loved ones. The plethora of information they offer has helped me on those nights of relentless internet searching that you will know all too well. Use them, call them, email them! There are people that care on the other end of those lines. And don’t forget to get your little one of the adorable Cleftline bears! They are too precious!
Our journey is far from over, our lip repair will be in a few days and I am a nervous wreck! Tears are pooling in my eyes as I write this and think about changing me beautiful, sweet girl. We have been blessed to have found a team that I trust with her care and I am so thankful for all the resources the Cleft Palate Foundation has provided. My wish and prayer for each one of you reading these words, is that you realize that your child is perfect in every single way and he or she will make a beautiful mark on this imperfect world. My prayers and my heart are with each and every one of you!