Sam's birth story

I feel like every mom of a special needs child has a birth or diagnosis story. I jotted this down relatively quickly after we came home with Sam as writing is a therapeutic tool for me and I didn't want to forget. We have never shared ours on here but I thought it was fitting on the eve of his birthday.

6/16/2008, 8:12 am and she finally walks in.

Please tell me I’m having this baby today, please tell me that. I was several days past my due date, attempting a V-BAC delivery with #2 so no help allowed.

(Dr. OB) “Since we can’t give you anything to start or progress your labor I am going to try to poke the tiniest hole that encourages your water to break and get it going.”

Thank God.

“Sorry, he is still just too high. I’m recommending another c-section.”

And in that moment, I knew. I knew with the confidence that I had test results backing up my thoughts. I knew something was wrong and it hit me like a Mack Truck.

Do I tell Paul who is radiating with excitement? Surely, I’m crazy. Surely, I am overreacting. No one else has said anything, Dr. OB is perfectly calm. I have to be overreacting. I can’t spoil his joy.

“Give us 20 minutes and we will take you in. Dad, go ahead and get in your scrubs.”

I kissed Paul goodbye and was wheeled away for the spinal tap and to start my second c-section. Then, I was alone. Not in the physical sense since I was in an OR and surgery was minutes away, but I was alone and something was definitely wrong.

“Time out: Mom, age 30, 41 weeks pregnant, Dr. OB performing a c-section. Allergies: strawberries.”

There is so much talking, so many people, it is so bright. I just want it to be over. I can barely breathe and am shaking uncontrollably; I cannot stop the tears from pouring out of me. They keep giving me more drugs because of the shaking and this is all wrong.

Finally, Paul and Dr. OB have arrived.

(Dr. OB) “Here we go! Are we ready to meet that baby?”

I am ready for this to be over. I have to be overreacting and I am praying I am crazy. I just need hear the baby cry. Then I know it will be okay.

“And it’s a boy!”

I don’t even care-I just need to hear that baby cry. Cry baby cry.

“What’s the name?”

(Paul), “John Samuel, we are going to call him Sam!”

I am going to scream-I need to hear the baby cry. Why am I not hearing him cry?

And there it was…The best cry I have ever heard. At that moment I took one, deep breath. In those few seconds, I was relieved. We have a boy, I thanked God, and I smiled…and then all the relief went out the window.

“Mom, Dad we have some issues. He has a cleft palate and a very small jaw. He also has some ear deformities. Dad come see him.”

What does that mean? A cleft lip? The room is now packed and they are taking him away. But I heard him cry. He has to be okay.

(Paul) “He is okay. He is having some difficulty breathing but so far organs appear healthy; he just…looks different.”

What does that mean? He looks different?

(Dr. OB) “He has a cleft palate and a really small jaw. His ears are deformed. Sam is being sent to the NICU for observation and a team will evaluate him so we make sure he has everything he needs. I’m going to start sewing you up and we will get more information.”

I hadn't spoken, I couldn’t think. I HATE drugs and I wanted them out of my system. I need to focus and understand what is going on and I’m in a haze. I have no idea what everyone has said or what it means. Where is Paul? Did he go with Sam?

“Sam is doing great right now and I’m going to have them wheel your bed from the OR into the NICU so you can see him. We think we know what it is but are waiting for the geneticist to come down before we discuss.”

I am overwhelmed. I am quiet. I don’t know what is going on. As they wheeled my bed into the NICU, I could see him lying there, peacefully. So beautiful and sleeping soundly. What was everyone so worried about? I barely got to touch him when I was interrupted…

“I’m sorry you can’t stay-we are taking him next door to run some tests. Do you have family waiting in your room? Do you want me to get rid of them?”

Yes and yes. As we were wheeled back to our room, our OB told us Sam had been born with a rare genetic disorder called Treacher Collins syndrome. The geneticist confirmed it. So there we were: Paul and I in our room, our newborn baby in the NICU, and our family ushered out somewhere else with who knows what information.

Then, we cried. Neither one of us had heard of TCS, but it was evident it was serious and we were sad. Sad this was happening to us, to Sam. Sad. I don’t know how long we cried, but then Paul ended it.

“He is our son and we will love him with all our hearts no matter what. We are capable of this journey and will give him the best. This is the last time we will ever cry and be sad he was not born perfect. He is our perfect.”

And he was right.

To clarify, we have cried many times since and still grieve over our difficult journey and the extra obstacles we face, but we do not grieve the loss of the "perfect" baby. We have our baby and accept the way he was born. It is part of who he is and luckily, he is great.

We don't reflect on those early days very often. We were scared and it was hard. It started our most difficult week, but was certainly not our most challenging moment. We are of the opinion it doesn't do anybody too much good to focus on the challenges, but prefer to accept it and move on. It is crazy to think back on it and how far we have come and his upcoming birthday just seems to be the appropriate time.

Some might say we have experienced great difficulties in the most recent years, but really it all boils down to the same daily question as any other person on any given day. Life is simply a group of experiences, Do you embrace your day or let it defeat you? Everyday I have a choice and continue to try to embrace them all. I was given the opportunity to make a significant change and I went for it. It was easy to live in the moment and be thankful for the now because it was all we could do. It was impossible not to understand what our priorities are and live our life accordingly. We were lucky; we had been given the gift that was only Sam's to give and he chose us.

3 years ago...I just can't believe it.