This post of Project Molly’s Eyes is a special one. I knew it was the right time to tell Molly about this project and mission at the end of 2018. She was 8. Her eyes welled up. She was extremely touched and honored to be the inspiration that sparked PME. She wanted to be apart of it, more than the namesake. In the midst of the chaos of losing her hair and the painful emotions that loomed (see caption under the first image), I made a promise to her that we would do a Project Molly’s Eyes event TOGETHER in January. It was a beautiful way to begin a fresh, new year. After all, you can’t always choose what happens to you in life, but it is your choice how you react.
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Thank you to the wonderful families and children who came out from near and far to make this a event! We are honored to share your stories through images and your words. Below are the stories of four remarkable children written by their moms.
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We begin with a message from Taylor’s mom, Nicole:
I was 30 weeks pregnant and, and it was ultrasound day. -An exciting day! This was the chance for me to get a tiny glimpse of the child who I have known so well through kicks and flutters yet still pine for the day to hold in my arms. For me, it does not matter if it is the first ultrasound or the 12th, getting an opportunity to peek inside my own body to watch my baby for a few moments is a precious advantage. We had already been told it was a boy at a previous ultrasound, and this time was just a routine check to make sure that he was on target.
A few minutes into the ultrasound, the technician, who had been there for our first glimpse with this pregnancy, stated that she needed to go and check with someone about what she was seeing. She tried to calm us with the comment that this was a very routine practice. Since my first child had HELLP Syndrome, this was the 12th ultrasound I had and the first time anyone needed to consult with someone outside the room. Being the analytical type that I am, I looked at my son’s father. We both knew that something was not right. The technician had been looking at our son’s face, which he usually liked to hide behind his arm, but today was more willing to cooperate. We both said, I bet he has cleft lip. We had heard of this happening but given that it does not run in either of our families, we had no idea what we were in for.
A few moments later a doctor walked in, pronounced that our son has cleft lip and palate. This was curtly followed by the fact that we needed to seek out a pediatrician for him immediately and that we should prepare ourselves because “it isn’t pretty”. He promptly walked out of the room leaving us and a shocked technician in his wake. The technician handed me Kleenex as I was crying at this point understanding that I would have another challenging pregnancy and road ahead with another child. I thought immediately about the poor baby boy who was so dependent on me for everything, and I had let him down. The technician was also in shock it seemed; not knowing what to do or say. We walked out of that office feeling helpless, confused, distraught and depressed at the future that faced us.
“WHY ME?!” I thought.
Luckily, we had booth knew to look for medical help and support immediately. Given the lack of support and direction from the doctor at the ultrasound, we needed someone we could talk to, ask questions of, and cry with now that the dream we had for our son was not going to be. We found the amazing team at Gillette Children’s Hospital in St. Paul. This team was able to get us into their office, talk about what life would be like (including all of the surgeries to expect) as we found our new path. Most of all, the team helped us to see that our son would still grow up to be an amazing child, and this diagnosis was not something we would have to do alone.
The road has been challenging. The first few years are the hardest and I still cry when I think about all the preparations for surgeries, medical appointments, and sheer worry I had for my son. However, now I no longer think “Why me?!” I instead think, “Why not me?” This process has taught me that while the road is challenging, I have the strength to travel this with my son. I think about others for whom pregnancy and child birth have been a breeze. I wonder if they would have been able to travel this road. I believe that I was chosen to travel this road for a reason. I strongly believe that all of us parents who are privileged enough to have children with cleft lip and palate were chosen to walk alongside these amazing kids and each other.
Now I wear a bracelet every day that says, “You were given this Life because you are Strong Enough to live it”.
Today, Taylor is 12 years old. We have been through 5 surgeries together. Taylor also has been diagnosed with Eosinophilic esophagitis (EoE) this is where an allergy causes inflammation of his esophagus and can cause food to get stuck at times. This diagnosis has also added more upper endoscopies and a gastroenterologist to our list of medical needs, but we are always together. Taylor takes all of his appointments, orthodontic visits, hospital visits, tests, etc. as best he can. He is very strong! All this has also prompted Taylor to start talking about wanting to be a nurse or a doctor someday so he can help kids, just like those who have helped him.
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Next is a note from Kayla, Kenzie’s mom:
My beautiful daughter Kenzie was born on in summer of 2010. Little did we know she would make a far greater impact on our world than we could ever imagine. We had no idea that she was affected with a bilateral cleft lip and palate prior to her birth.
I remember looking over my shoulder, after the doctor had cleaned her up from an emergency C-section and noticing her wide smile. With tears of joy and anticipation of meeting my beautiful new daughter, I whispered to my husband “I think she has a cleft lip”. Only minutes into this world and she was transported via helicopter to Children’s Hospital in Minneapolis. I was transported by ground ambulance. We spent approximately one week at the hospital together. We began our cleft Journey.
She received her new beautiful smile at three months. (I sometimes miss that wide smile. -her first wonderful infectious smile.) At one year her palate was repaired. Seven surgeries in eight years, and she is a thriving, gorgeous little girl. She is smart and spunky! She loves playing with her three-year-old brother and being goofy. She is larger than life with a beautiful soul. Her strength and resiliency is one that I could never have imagined coming from such a tiny person. It’s as the saying goes, “let your smile change the world.” Her smile has already done so and will continue as we move forward on her journey.
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Finally Cara’s words about her children Sydney and Brooks:
we couldn’t have been more excited to start our family when we found out we were pregnant with our first child! Everything was on track during the first trimester. I felt great! We decided we weren’t going to find out the sex of the baby. I went in for an ultrasound appointment alone and received the news my baby had a cleft lip. They wouldn’t be able to tell if he/she would have a cleft palate until birth. I walked out of the appointment full of emotion: sad, scared, and overwhelmed! I had to go home and break the news to my husband. We both sat, held each other and cried. This was scary!
We were fortunate to have support. My brother was born with a cleft lip and palate and my parents were there for us. Yet, it didn’t make it any less emotional. I never suspected that I might have children with clefts. Deep down I knew everything would be okay. Yes my baby would need surgeries, but it would be okay. We met with a plastic surgeon and orthodontist before she was born, so we knew what to expect .
Our daughter was born with a unilateral cleft lip. She was beautiful! We named her Sydney. She is almost seven now. Sydney had her initial lip repair at 3 months and two lip revisions since.
With our second child, we found out at our anatomy ultrasound that we were having a boy! The words that he had a cleft lip and palate soon followed. For some reason, it was harder than finding out with our daughter. More surgeries for him and different bottles. -I found the dr. Browns bottles with a special valve specially designed for infants with crainofacial defects.
We stayed strong while we waited to learn how severe his defect might be. Brooks was born with a unilateral cleft lip and palate. He was beautiful! His palate was quite severe, but we were prepared as much as we could have been. At three weeks, he had a Latham device fitted to bring his palate and lip together before his lip repair at three months. It was weekly appointments to readjust the device, daily changes of the bands that held it in place, along with daily cleaning. It was a lot! The Latham device did its job and was worth it! His lip repair turned out better than expected. His palate repair went great too! He is now almost three. Looking back with everything we have been through, the hard times went by fast. We have had great support through it all. It is truly amazing how resilient children can be.
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Here they are again! The beautiful children of PME 2019 with sparking eyes and resilient personality! THANK YOU for sharing your stories with us and become our new and treasured friends.
Molly will turn 9 years old on Valentine’s Day. I find it difficult to put words to the emotion and awe I feel towards her, especially after the last few months. She is stunning. She is courageous. She is rare amongst the rare. This has been a journey, and it continues to unfold.
We do our best to raise her up to be the person she is destined to become. We clear her path. It’s not easy. My heart swells and often hurts. I cry more than I care to admit. Yet somehow through this darkness and uncertainty, life pieces itself together in a miraculous way that would never have been possible without feeling the pain. There is a profound clarity and purpose earned.
I thank God for this girl and the inspiration she has fueled in me and countless others. She is magnificent. Happy birthday, (sidekick, mini, mighty) Molly!
~Abbey