Happy

The newest addition to Atticus’ vocabulary is the word ‘happy’.  I love hearing him say all of his words, but there is something special about seeing his face light up as he says the word ‘happy’.  It is such a positive, powerful, yet simple word – one that we all understand, yet a concept that not everyone lives by.

I know it might be easier said than done, but one of the greatest lessons I have learned in life so far is that I can chose how to react to situations.  I cannot control everything that goes on around me, but the one thing I can control is how I react to those situations.  We all have our innate way that we react to life and all of it’s stresses, but with conscious effort and WORK, those reactions can be changed.  I don’t mean to sound like a self-help writer or therapist, but it really is true.

One of my favorite books of all time, and one that has changed my life is ‘How We Choose to Be Happy‘ by Rick Foster and Greg Hicks.  This book goes through 9 choices that extremely happy people make.  If you want to make real change, you have to be committed to these choices, catch yourself when you fall into a faulty way of thinking, and willing to work through and change those faulty thought patterns.  One of the most powerful things about this book for me was actually giving a name to the different faulty thought patterns.  When you are actually thinking irrationally, it is very difficult to realize it when you are in the moment.  But if you can step back, analyze your thoughts, and actually pick out the exact type of irrationality you are making, it becomes easier to categorize your thoughts into irrational and rational.  And, obviously, it is those irrational thoughts that need to be identified and changed.

Over the past two years, I have become an extremely happy person.  Not that I wasn’t happy before that, but I am extremely happy now.  In those two years, I had a baby, which was something I always wanted.  And you could say, well then that is why you are so happy (and this is partly true), however, we have faced a lot of difficulty over those two years, as you would know if you read my other blog posts.  But even with everything that we had and have going on – the moving to a new state, starting new jobs, navigating a new city, having a child with a rare medical condition, multiple surgeries – I am able to stay positive and happy and look at everyday as a gift and as something to cherish.

I think there are multiple reasons why I was able to make this transformation into a happy, logical, and positive person.  One reason is the above mentioned book, which was recommended to me by an amazing cognitive-behavioral psychologist who I actually began seeing when we were struggling to get pregnant.  She helped me get through that time and then again was a saving grace when I did become pregnant, but at 7 months found out that something was wrong.  Had I not been seeing her for over a year at that point, I’m not sure how I would have made it through the last 2 months of my pregnancy.  She gave me the positive thinking strategies, the perspective, the logical thinking – basically all the tools that have created the ground work for what I’ve been able to achieve and maintain, even through some really challenging times.

You are probably wondering what the nine choices are, which I’ll list below, but I would highly suggest buying the book or getting it from your local library.  I like owning it though, because I like to write in it and I read it probably once a year.

1. Intention – making an effort and consciously choosing attitudes and behaviors that will make you happy.  Basically, don’t just let your knee-jerk reactions take over.  Stop yourself, and actually choose to change how you react to a situation.

2. Accountability – taking accountability for your actions; creating the life you want.  I love this one because it sort of puts an end to endlessly complaining about your situation.  One that I see come up over and over again in people’s lives is unhappiness at a job.  I realize that it’s not easy to find a new job, so I don’t have any problems with short-term complaining about a job, but if it goes on for years and years and you are just unhappy, then you need to be accountable and find a new job!  If you take no action to change your situation, why would you expect anything to ever get better?

3. Identification – figuring out what really makes you happy, not what you feel should make you happy.  Maybe you were always pressured into going to college and being a doctor but deep down you, say, wanted to become garbage man.  Then by all means, become a garbage man!  Do not succumb to what society or anyone else says you ‘should’ do.  By the way, garbage men make surprisingly good money.

4. Centrality – the things that truly make you happy – make them central in your life.

5. Recasting – transforming stressful situations into something positive;  I LOVE this one and it is another one that has helped me through a lot of situations.  I never look at Atticus and think ‘why was he born with this malformation?’.  I look at the positives and everything that we have learned from him and his strength.  I don’t sit in the waiting room when he is having surgery and think ‘why us?’.  I think about it as just part of his journey.  We all have our own journeys.  No one’s life is ‘easy’.

6. Options – being flexible and open too new possibilities;  another one that I LOVE.  This is the one that I had the biggest problem with when I started on my journey.  I would lay out a plan, and if it it didn’t go exactly as I’d planned, I was stressed.  I couldn’t look outside of the situation and realize that if one way, for whatever reason, can’t work out, if you look hard enough and force yourself, you can come up with probably at least 10 other options for any situation.  Once I realized this, so much of my stress went away.  You need to think outside of the box and problem-solve.  And there is something liberating about being a flexible easy-going person.

7. Appreciation – basically be grateful for life and stay in the moment.  Don’t dwell on the past or what things used to be.  Look for the positives in what the situation is right now.  Life is short, and I’m certainly not going to waste any of it being grumpy, ungrateful, or longing for the past.  Practicing yoga is awesome for learning to be in the moment.

8.  Giving – sharing yourself with friends, family, the community, and the world.

9.  Truthfulness – be true to yourself.

Not to act like I’m awesome, but I really do feel like I have nearly mastered these 9 choices and I feel enlightened.  By my work isn’t done.  Even in the face of uncertainty and all of life’s challenges, I work to maintain this way of thinking.  This book is definitely worth a read, and remember that you need to work at these choices.  Catch yourself when you are making a faulty choice.  I like the 9 labels because it allows me to easily pick out when I am violating one of the choices, and then I can work to correct it.

I would probably add a tenth one, which is probably housed in one of the 9 above, but just BE NICE TO PEOPLE.  I like to employ this one at work.  Not everyone is always in an awesome mood, and that is fine, but I notice that I feel better when I greet everyone with a smile and genuinely ask how my coworkers are doing.  We are all human beings going through our own issues in life and just simply being nice to one another goes a long way.

One more thing that I will say is this – yes, I have gone to a psychologist before and I’m not ashamed of it.  We think nothing of going to a doctor for a broken bone or a fever, so why not get help when your thought patterns are ‘broken’?  I’m a firm believer in cognitive-behavioral therapy and actually learning tools to think more rationally and logically.  Too bad we don’t teach these skills in elementary school, but hey, better late than never!

“Happy!” – Atticus

The Beginning

This blog has been a long time coming.  Not only because I feel like I have a lot to say, but because I feel that I owe it to other parents out there who have a child with some type of rare medical condition.  Our son, Atticus, now 15 months, was born with a big tongue.  Not just big, but pretty huge actually.  It protruded out of his mouth and was so big that his mouth was permanently wide open.  We knew before he was born that this was the case, but I don’t think that family members or friends realized exactly how large we were talking.  Up until he was born, we didn’t know what was causing this large tongue – was it indicative of a more troubling genetic or chromosomal disorder?  Was it an isolated event?  Were there other not-so-obvious things wrong?  What would the quality of his life be?  What would his future be like?  Is it fixable?  There were so many things going on in our minds at that time and the last couple months of my pregnancy were some of the darkest days I ever experienced.

We drove to St. Louis on Sunday, May 6, 2012.  I was going to have a planned EXIT procedure, which is an extension of a C-Section, the following day.  May 7^th was dark and rainy.  We checked into the hospital early and I was put under general anesthesia.  I did not witness my child being born.  My husband, Brian, was not allowed in the operating room.  It was me and 28 doctors in the sterile hospital room.  I was so nervous that my body was literally jumping off of the operating table because I was shaking so bad.  Each team of doctors had their last names (color-coded by team) on their backs.  Every doctor was extremely focused and had a mission.  Their concern was delivering my baby, establishing his airway around this massive tongue, and closing me up before I lost dangerous amounts of blood.   They finally put me to sleep and I remember looking up at the light and wondering if I would ever see Brian again.  I know that sounds possibly exaggerated but I couldn’t help it.  I couldn’t help but think “What if they can only safely deliver the baby if I have to stay open and lose fatal amounts of blood”.  It was a concern.  All the while, I still didn’t know what was wrong with my baby.

Atticus Blake Kurilla was delivered on May 7, 2012 at 1:29pm and weighted 7lbs 7oz.  We had no family or friends in St. Louis (we didn’t even live there), so Brian was all alone waiting for updates on what was happening with his wife and baby.  He was talking to his mother on his cell throughout the delivery, but they were both probably too nervous to even know what they were saying.  I am glad that she was a comfort to him at that time though.  Once Atticus’ airway was established via breathing tube, he was put in an incubator and a team of doctors and security guards rushed him to the NICU in the St. Louis Children’s Hospital.  Brian was able to see him for the first time and I was still asleep.

I woke up some time that afternoon.  The first face that I saw was Brian’s.  I remember the first words that I said were “I love you”.  I was confused.  My stomach was smaller.  I had had a baby.  But, I still hadn’t seen him, hadn’t heard him cry, hadn’t heard those words “It’s a boy”!, had no idea what he looked like.  Brian told me Atticus was beautiful – that it looked like he had red hair.  I was still out of it and could barely comprehend what Brian was saying.  I received two blood transfusions because I had lost so much blood.

One nurse was assigned to taking pictures of the delivery, since neither me nor Brian were able to experience it.  They blew up one photo and put it near my pillow.  I saw him for the first time in that photograph – this mystery baby that I had carried for nearly 38 weeks.  He was beautiful.  In the photo, a doctor had placed two fingers over Atticus’ large tongue, so I still could not see what it looked like.  I remained out of it for the rest of the day and into Tuesday.  Still, I had not seen my baby.  I was not well enough to go to the Children’s Hospital.

Sometime on Tuesday afternoon, I began to feel lightheaded.  My heart rate shot up to 180 beats per minute and I was losing consciousness.  I felt my awareness slipping away.  Doctors rushed in.  Someone was asking me if I knew what year it was – if I knew who the president was.  I knew the answers at that moment, but felt that soon, I would not know the answers.  They asked me if I had a family history of heart conditions.  I thought of my grandfather who died when he was very young of a heart attack.  Did I have some sort of condition that I didn’t know about?  What if I die before I meet my child?  Doctors were puzzled and nurses were scrambling.  I didn’t know what was happening and was scared.  I looked over at Brian with his head in his hands.  This was a lot for him to go through.  Sometimes this happens when you lose a lot of blood, but they had already given me two transfusions.  They did an EKG and it was normal.  They thought maybe I had a blood clot.  They started giving me more blood and I remember starting to break out in hives.  Am I allergic to the blood?  They contemplated stopping the transfusion but soon the hives dissipated and I was getting more conscious.  They sent me for some sort of test to rule out blood clots.  I was in so much pain and was getting stuck with endless amounts of needles.  It was over 24 hours since I had given birth and I still had not met Atticus.  I didn’t know what he looked like and I still didn’t know what was wrong with him.

On Tuesday evening, they put me on a heart monitor and determined that I was well enough to go over to the NICU at the Children’s Hospital to meet Atticus for the first time.  I have to admit that I was scared.  What would he look like?  His facial malformation that I had only seen on ultrasounds would be real now.

Brian wheeled me over in a wheelchair and I was nervous going into the NICU.  When I first saw Atticus I thought he was beautiful and loved him instantly.  There were still so many unknowns though, and I remember being upset that this beautiful baby had this massive protruding tongue.  One nurse came in and said “He’s beautiful, but, hopefully they can do something about that”.  Well, what if they can’t?  I thought, “He is beautiful either way” and was offended at her words.

I remember Brian sending out texts to our family showing a just-born baby Atticus from about the nose up.  Were our family members ready to see the rest of his face?  They were all back in Pennsylvania and were dealing with all of the uncertainty from afar.  I remember Brian sending out a text asking close family members if they wanted to see a picture of his whole face.  That affected me.  I understand why Brian asked, and I would have done the same thing, but it made me sad that we had to ask this question.  Of course, they said yes, and for the first time, I think they realized how big his tongue really was.  They were confused, had never heard of this, and didn’t understand why this happened.  They wanted to know what caused this, and what would be done about it.  We didn’t have answers and neither did the doctors.

It was pretty clear to doctors that his enlarged tongue was an isolated event and was not related to a genetic or chromosomal disorder.  MRIs taken right after he was born proved that everything else was perfectly normal.  All of his organs were fine.  This was a HUGE relief!

We thought that Atticus would be getting a tracheostomy to help him breath and a feeding tube soon after birth, but two days after his birth, they removed his breathing tube and he breathed just fine on his own!  Most of the tongue enlargement is in the forward part of the tongue and not the part that goes down your throat.  Next, came feeding, how was he going to eat with a tongue this size?  Well, super baby did it on the first try.  His doctors were so pleased and he was released from the hospital after only 11 days.

I remember not feeling ready though.  I felt that we were getting discharged and still didn’t have any answers.  We still didn’t know what was going to be done about his tongue.  I had never seen anyone with a tongue this large and expected them to just surgically correct it right after birth.  Things are not that easy though.  I was worried about his future and what it would mean for him to go through life with a facial malformation this noticeable.

I quickly learned, however, to let go of needing answers.  He was healthy and beautiful and OURS!  This baby that I had wanted for so long was now here and I was not going to get hung up on the “What ifs”.  I focused on all of the positives of the situation – number one being his health and the fact that cognitively and mentally – he is perfect.  I was grateful that Atticus has what is called a lymphatic or vascular malformation, and not something that will affect his development.  I focused on the fact that he will lead a long and normal life and all of the struggles that this big tongue might cause will only make him a stronger and more compassionate person.

The doctors at St. Louis planned a wait-and-see approach.  Sort of follow the course of his tongue and see how it grows as he gets older.  They planned that he would have a surgical tongue reduction later on, probably sometime around his first birthday.  Brian and I accepted this approach.  It was not a quick fix approach, but we realized that there would not be a quick fix.  This would be a long process and one where Atticus’ tongue might never be a ‘normal’ size.  Only time will tell that.

For now, I firmly believe that we were given Atticus for a reason and he was given us for a reason.  We love him so unconditionally and believe that he will embrace himself, his strengths, his weaknesses, his imperfections, and that he will grow into a strong and amazing individual.  His life will not be ordinary, but that is not a bad thing.  Brian and I often joke that Atticus is already so much more interesting and cooler than we are and he is only a baby.  I also truly believe that Atticus has saved me and changed me in deeper ways that I ever could have experienced, had we had a normal delivery and a baby with no abnormalities.  He has made me a better, more carefree person.  He has taught me that things will work out, things will fall into place, and to accept things, and see the positives.  My life is so much brighter since I met him.  I always say that he cured me of all of my anxieties and worries.  I can honestly say that I enjoy every day of my life.  I don’t worry about anything unnecessarily and I am truly grateful for everything that I have.