Sunday, December 12, 2010

Rylan's life n' some....

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.

Snowy day

Well this weekend has come and went just like the wind that blows strong today.
And here in STL winter has taken a strong hold today.....
Friday night I went out with some friends from college. We met down town had dinner and then moved on to Shiver. One of the guys bought dinner, on his corporate card, we all paid for own drinks. Here is the kicker, I was surrounded by mostly Russians and I found myself attempting to enjoy a glass of red wine with dinner only to have them order rounds of vodka shots.
I'm not a shot girl. Let alone before my dinner even arrives.
Apparently they do vodka shots with everything and anywhere. Then the follow it up with a pickle. I know - a PICKLE.
We went to shiver - a dance club with a room made out of ICE. Very trendy. And the first round of drinks - you guessed it shots of vodka. OMG. Give me some water already.
I've decided that I cannot hang with the Russians.
Saturday the family went to make ginger bread houses at a friends house. It was a lovely affair - until 10 pm rolled around and I am still waiting on Lance to show up so we can take the kidz home and let the dog out of the kennel. Mind you we left the house 12:30 in the afternoon. Then we get home to a dog that has pooped and puked in his kennel. Two kids dead tired, and a dog that needs some attention stat!! Nothing like cleaning dog poop at 11pm.
Sunday was designed to be a lazy day. I had plans to FINALLY get my tree up and attempt to address the house the clean fairy has neglected. Then I look outside and what do I see - SNOW. Not that I had planned to go outside today, and now that there is snow outside that has sealed the deal. I am going to turn up my heat to 86 degrees and act like I live in FL.
As the kids get super excited, I start trying to find their snow suites, gloves and hats.
I guess today it really is time to put away my summer clothes. Awww rats!
So since it is slick as snot outside I've decided to take a few photos, and even publish a blog post.
Have a great sunday!!

Friday, December 3, 2010

Out of the blue.....

I got nothing really.
A head full of nonsense, and random thoughts that keep me up at night.

Thanksgiving was a bit of blurr. I did not get to see my sister or brother that day, but in a gift from god, got to see both of them the day before. It was a totally shitty day, rain, cold and flat out gross. I was running late, because I had to run the kids to BFE and I was not at my desk for more than 15 minutes when I get a call from my sister.
And much like late night calls that put you on high alert an early morning call from any family member other than my mother can only be bad news. Well, low and behold - not bad news.
She was on her way to the airport and wanted to know if I wanted to tag along.
She got a call that my brother was flying in and he needed someone to pick him up.
Things are a bit tense for all of us right now - not worth throwing out there all the gory details, because within in time it will all blow over. But tense none the less and I can assure that with my brother flying in to see his family, his two sisters are not the top people on his list to see the moment he gets off a flight.

However I am giddy to the bone.......I look around my desk and the pile of work and throw caution to the wind. I state 'sure come by n' get me, I'm in.'
I hang up and start work damage control, I just got in - I am leaving in 10 or so minutes, and I must be back within an hour or so. I have a big lunch meeting that I have to make. I am starting to question whether or not I can really pull this off, then determine that I cannot afford not to. Not if I want to see my brother n' sister.

So she shows up and away we the airport, giggling the whole way. We pull up to the arrivals and find our bro and you can see the surprise on his face to see me in the car too. We dance around a few topics and decide to move on to things that keep us in a good spot, like kids and when we were kids. On the way to take me back to work, we decide to eat, therefore spending another hour or so together.

It was a time for us to just be us. Matt calling Misty 'shorty' like he normally does and the three of us glad for a moment to be in each others presence. For me it was very peaceful and easy. We shared a few moments of smiles and laughter, I took them to my work did a few introductions and then we said our goodbyes.

It reinforced for me that a sibling bond can never be broken. We may all have separate lives, different personalities, and different opinions on most topics - but our bond is deep. When you remove all the other elements out of our lives, our parents, our spouses, our children and peel us down to just us - we are kids again enjoying the bond we created years ago. We can see each others worry, struggles, joy and pain without saying a word. And then realize that in some cases words are not necessary. That it will ultimately be okay. We accept each others failures, choices and even if we don't like them, we are learning to respect them. Even if we have to do that from afar or with distance.

Much like that day, I think each of us know that if we ever needed each other we are just a phone call away. No questions asked. It can be pure and simple, just love and a sibling bond. I am beyond grateful for that day and those moments, I needed that small silver lining to get me through.
My day was designed to be shitty, started out crappy and by the grace of god ; ended better than I could have ever imagined. So even though we did not spend Thanksgiving together and may or may not see each other over Christmas; we have an understanding.

So I wish that on that day that seems like it is gonna suck the most, that you find your silver lining. That god delivers to you the pretty package with the bow, when you least expect it. And on those days when the silver lining does not appear you have a memory like mine to hold on too, the kind that makes you smile.


Nieces & Nephews and Kids...