I'd like you to meet Rylan Alexander DePew, born March 30, 2001 way too early in the morning. He was born bi-lateral cleft lip and palate with the possibility of other symptoms and syndromes. At our 6mth ultrasound they asked us if we would like to abort, I lay there in horror that they could even speak such words, as I see him sucking his thumb on the monitor and his heart beating. The nurse lets me know that 60% of people that find out they are not having the perfect baby abort. I begin to cry. Listen I am already a freakn' basket case, afraid and terrified of being a new mom without the idea of having a cleft child looming over my head.
I was not the poster child of health and healthy living, but then again I was not Courtney Luv either. I have never done drugs and lead a pretty active life style - working out, traveling ect. I did not date alot, nor have I had alot of boyfriends actually less than you can count on one hand. So, I was baffled as to why we were having a child that was cleft. My brother and sister already had children, all perfectly healthy. My husband, the youngest of 6 had several nieces and nephews - once again all perfectly healthy. And yet we ended up with the 'genetic mishap' - that was a term used in a doctors office. I genetic counselor I think. Ohh these doctors get to be absurd at times.
I spent majority of my pregnancy puking, crying and being afraid of having a baby - a cleft baby. I got on the Internet and begin to gather information. This literally scared the holy bee-jeeze out of me.
Rylan was born blue, not breathing and failure to thrive. I was high on morphine and my limbs did not work. As you can tell we were off to a good start. They rushed him off to the NICU and placed a feeding tube in him. Within 48 hours I went home with an empty car-seat.
I remember being in the elevator, and a couple looking over to glance in the car seat and I started to cry. Much their disappointment and concern the seat was empty. At that point so was my heart. I walked into our apt at the time and cried. I pumped, because he was missing majority of the roof of his mouth so breastfeeding was out of the question. I would sit like a cow in the milking room, and cry. I had visions of him being awake in the NICU crying and no one holding him. I would call the NICU alot, at all hours of the night, just for some source of comfort. During the day I would hike my way to Childrens and sit for a few hours and hold him and pump. But having just given birth, I could only stay hours at a time rather than all day.
If I would have passed 'me' in the grocery store, before Rylan had any surgeries I would have thought I was a crack head and did terrible things to my body while prego. My views on life and humanity have changed, hopefully for the better with Rylan in my life. I thought I was a good person, I thought I was not judgemental, I thought I would not 'stare and judge'. I was wrong. He continues to teach me everyday.
From the start we decided to celebrate Rylan and embrace this genetic mishap. Easier said then done, I can assure you. It is a task that requires me to put one foot in front of the other each day, and there are days when I fail.
His first surgery was at 8 weeks old. Feeding was a nightmare, he swallowed so much air when eating that his belly hurt. He would cry and cry. I remember once holding him, feeling at my wits end. I layed him down in his crib, picked up the phone and called my mother. I said 'mom, I don't want to hurt him. but I am ready to put him in the closet and walk away.' And with that she came to get me and him for a few days. My advice to anyone with a newborn, have a good support system. Lance was helpful, but he worked and traveled. Know your boundaries and know when you have reached your limit. Children with clefting have feeding issues, gas issues and they take alot of time. All babies take time this I have come to find out, just a bit more with a cleft child. We were unable to sooth him at times. He could not take a pacifiers so there were times when we truly did struggle to comfort him. Warm water bottles, gas drops, bathes etc.
My regret is that I missed the first few months of his life and never really enjoyed any part of my pregnancy due to the fact that I was totally wrapped up in my emotions of being afraid and the 'what if's'.
At 8weeks old he had his first lip surgery. It was approv 2.5 hrs long. He cried as the nurses lead him to surgery and with that I felt helpless. He would have two more similar surgeries in the very near future. 8 weeks, 6 mths and 13 mths. Such an aggressive schedule for such a young soul.
Thought it all he shined, he smiled and he was every version of normal. And truthfully the night before his first surgery I cried. I was going to miss his crooked little smile. I remember being pregnant and wondering IF I was even going to be able to tell if he was smiling. Ohh the things I wasted my time, thoughts and energy on. Like a true mom, I grew to luv him despite any imperfections inside or out.
We have a team of doctors, which I am sure mean well; but I am learning not to hang on every word and take it with a grain of salt. At first I hated our plastic's guy, I mean hated! But the moment Rylan saw him, at 2 days old - he smiled. He stopped crying and smiled. It was like Rylan choose him and I was coherent enough to pay attention. We had the chipps stacked against us, they spoke of dwarfism, him being deaf, learning disability, downs syndrome all factors we would need to prepare ourselves for. Up until 2nd grade I've been waiting for the learning disability to rear its ugly head. And now that we are pushing 10 yrs old, I have given up that stress and embraced the glowing, sassy 10 yr old in front of me. The doctors get in your head, they try to prepare you, I guess. But than in the same token, I just wanted someone to say to me ' it is going to be okay.' It is going to be okay.
We are successful in part because he is such a great kid, but also because we embraced his clefting as we do his green eyes. It is just a part of him, not who he is. We keep his newborn photos up around the house and he will wear it like a badge of honor never to be ashamed.
And at this stage in his life he has found that it can lead to some pretty good lunch table laughter - such as sucking the spaghetti through his nose. The perk to now having much up there I guess.