I Wish I’d Known… How Much I’d Love You

Post Shared by J Marie Cwir, Kaeden’s mom and author of the book “I Wish I’d Known… How Much I’d Love You”

I, joyfully, spent my time during pregnancy researching and reading as much as I could about babies and how to take care of them. As a first time mom and a person who hadn’t really been around kids, I was mixed bag of excitement and anxiety over having a baby of my own. My husband and I took our time deciding when to have children, we did our best to do all the ‘right things,’ I ate right, avoided the borderline okay-to-do/don’t-do stuff, and I forced myself to eat healthier. I felt great. I loved being pregnant. The ultrasound pictures were hard to get, but the radiologist cleared it. Everything came back as a-okay.Our son, Kaeden, came into the world 3.5 weeks early; very unexpected. When they lay him on my chest his face was turned away from me and I had that overwhelming moment of joy and relief. Soon, the doctor took him to the other side of the room to be examined. The doctor, not my regular doctor, asked the nurse, “Did we know about this?”I didn’t hear or notice anything after that, I just looked down and told myself nothing was wrong. They quickly explained that our sweet boy was born with a cleft lip. I didn’t really know what a cleft lip was at that point and had never seen anyone with a cleft before. During the next 24hrs, I mourned the loss of what I thought was the perfect baby. I had a hard time accepting the cleft.

During pregnancy I had this inner feeling like God was telling me our baby was going to be beautiful. I even told my husband, “Our baby is going to be beautiful, I just know it.” An older gentleman at church mentioned that to us as well. I didn’t realize then what true beauty is. Beauty is not defined by what society deems as perfect. Now, I see that his uniqueness is beautiful and his cleft is exquisite. I wish I had known that then.

On Day two at the hospital, while holding Kaeden, he looked into my eyes. Instantly all my worries, anxieties, and fears washed away. In that moment, the peace of God flooded my heart. I burst into tears. He WAS perfect. He IS perfect. He was created in the image of God. God doesn’t make mistakes.

At almost four months old, Kaeden had his lip surgery. When I got into the recovery room, there was some blood on the sheet and he was crying in a weak, raspy voice like I had never heard before. It was heartbreaking trying to calm our swollen and bruised baby boy. I felt so helpless. I didn’t know what to do. I carefully maneuvered my way through the wires he was attached to and bounced him just like he liked it. He wouldn’t let me stop; any slowing down at all in the bouncing and he would start crying again. My first thoughts were, “why did I put you through this? What have I done? I’m so sorry!”

The first night after surgery was the worst. I was alone in the hospital caring for Kaeden. He did not want to be put down and he did not want the bouncing to stop! I was bouncing on an exercise ball to help the process, but I was nodding off while holding him. I called the nurses for help but no one was available to spare their time. I was terrified of collapsing of exhaustion and dropping my poor baby.

He also did not take well to the syringe feeding. The whole thing was frustrating and time consuming. I felt like we were force feeding him. During the first couple of days, he would just cry as we tried to feed him. But he soon got the hang of it. By a week and a half he was back to his old self, but with a new smile.

It was only after Kaeden’s surgery that I found an online group of other moms with cleft affected children. I wish I had had their support from the beginning. As I got to know them and hear their stories, I thought it would be a great idea to put together a small book of our stories. This is how “I Wish I’d Known… How Much I’d Love You” was born. A small idea that turned into a big project with the help of other like-minded moms.

My initial contact with Kate Ylst (Owner/operator of Tiny Wide Smiles and author of “I Loved You Then, I Love You Now”), got me started and she gave the idea for the title and theme of the book. So, not just stories, but a resource passing on advice and knowledge from those who have been there. And then, of course, you might as well add pictures, letters of encouragement, resource lists, survey, FAQ…. And a foreword by Dr. A Ordon (of the TV show ‘The Doctors’) to top it all off.

Putting the book together was an amazing journey in itself. It took me through many highs and lows. I wouldn’t have been able to complete it if it weren’t for my wonderful fellow cleft moms that volunteered their time. Further, the book would not be what it is now if it were not for my son. From the first year of book sales, I was able to donate almost $900 to cleft charities. The book is available now in the Cleftopedia shop!

Right now, Kaeden is a caring and active young boy. He is currently going through genetics testing based on further physical markers. He is slightly behind in speech and fine motor skills and is involved in programming to help him improve.

I’m actually glad Kaeden’s cleft was a surprise. I was very anxious as it was and this way, I didn’t have much time to mourn the loss of that ‘perfect’ baby. I was simply thrust into the joy of the parenting journey. I went from mourning the loss of my (skewed) perception of perfection, to mourning the loss of his beautiful cleft that I loved to kiss. I wish I could see that wide smile again. Captured forever in photographs is just not the same. His face has changed, but he has stayed the same happy, friendly, adorable, loveable, cuddly boy that loves to make people smile and whom I love to love.