This is an article I wrote for our NICU Newsletter.
"We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us." -Joseph Campbell, author.
This quote has been on my refrigerator for the past 7 years, ever since my son Evan was born. I doubt I would have thought anything of this quote if it had not for the birth of my beautiful boy.
January 18th, 2001-11:41 a.m. Evan entered my world and my life has never been the same. I had developed pre-eclampsia at 30 weeks and made it to 33 weeks before they had to take him. No one seemed overly concerned at OSU that he was going to be 7 weeks early so we weren’t either. During the c-section the doctor commented on the fact that he had punched his hand out and he had an extra thumb. I was devastated! My baby was not "perfect". What were we going to do? Little did I know that the extra thumb would be the least of our worries. By 1:30 p.m., Evan had been transferred to Children’s because of respiratory distress-they had a hard time intubating him and it was discovered that he was born with a tracheoesophageal fistula, esophageal atresia and a laryngeal web. It was so difficult to be separated from him but I remained at OSU for 4 days before I could come here to see him. That in itself was devastating. Was he scared? Was he in pain? My heart was breaking, knowing he was here by himself. Yes, my husband spent much of the time here during those 4 days but I couldn’t shake the feeling that Evan needed his mommy to be by his side. Once I was released, I never left his side. My life for the next 45 days would consist of sleeping at home and being here at the hospital during the day. It was so difficult to pull myself away from him each night. After my 10 minute ride home, I would often call the unit to see how he was doing!
49 days after our journey here began, we took our baby boy home-he was 5 lbs., he had a trach and G-J tube. Not the way we had planned on starting our life with our son. I was so incredibly scared-this is not what I signed up for. I had visions of never leaving my house because how could I drive by myself with him in the backseat with a trach? How would I be able to just run to the store with all the paraphernalia we had to take along with us? How were we going to do it? Would we ever lead a "normal" life again? Not only was I scared but I was mad, I was sad and felt our situation so incredibly unfair. He was my first and only child. Why didn’t I get to experience first time motherhood the way all my friends and family had? Why me?
But you know what? We DID do it. We had to create a new "normal". We endured countless appointments-neonatal clinic, physical therapy, occupational therapy, speech therapy, numerous OR visits for bronchoscopies and endoscopies. We changed his trach. We changed his Mic-Key button. My husband could set up and turn on the feeding pump in his sleep. We sat through a 6 hour surgery where a team of doctors actually reconstructed his airway so that he could breathe without a tube in his neck. We went to a feeding clinic because of he had trouble eating solid food. Who knew there was such a thing?? In my life before Evan I would of thought that to be very strange-don’t all kids know how to eat?
As our life with Evan unfolded, we learned that he would not hit the baby milestones when others did, like crawling, walking, talking. So, when that day came that he first crawled (18 months) and when that day came when he first walked (Christmas Eve, when he was 23 months) we embraced those milestones with all that we had and celebrated what he had accomplished. At one point we were told that he may never have a voice. As I mentioned earlier, he had to have his airway reconstructed using cartilage from his rib cage when he was 18 months and the trach was in for another 9 months. Up until the surgery, he made no noise because his cords were fused together. When we got the o.k. to start using a speaking valve on the trach, probably about 3 months or so after the surgery, I remember holding my breath and praying that he could tolerate it and that we’d finally hear his little voice. We DID hear his voice that day and he hasn’t stopped talking since! I actually have to tell him to stop talking at times, something I never thought I’d have to do. He has a somewhat gravelly,whispery voice because of all the scarring on his cords-people ask me ALL THE TIME if he's got a sore throat- but he makes himself heard and he doesn’t let it stop him when it comes to participating in school or talking with his friends or talking to anyone that will listen to him because he has a lot to say!
Remember how I wondered why me? Well, now, seven years later, I can say why not me? I am blessed with a confident, beautiful, smart, funny, compassionate 2nd grader who wakes up each day with a smile on his face and love in his heart.
The boys with Tom
Tom's
The kids at the Farners
Indy
Indy
CANDY!!!
