Roller Coaster of Life

      To begin we need to go back to April 2012 at South Towne Mall. Ashlie and I had just got off work, and arrived at Fetal Studio to determine the sex of our first child.  For most of my life I lived in home dominated by females, I was dead set that we were going to have a boy. We sat down and the ultra sound tech started showing us arms, feet, mouth, nose, and so on. He then delivered the news that we were going to have a little girl. My face went from a big smile to dissapointment. This 'depression' lasted for two weeks. What a fool I was! On September 25th, 2012 at 9:35 PM I was given the greatest gift of my life. A beautiful blonde hair, blue eyed little girl holding on to my fingers and I could not keep my eyes off of her. 

     Charlie is the easiest child I have ever come across. Within forty days she was sleeping through the night. She has been sick no more three times, and she rarely ever cries. One night in November 2013; I got home a little early, opened the door, and heard DAD with little feet on the hard wood floor heading my way. Truly one of the highlights of my entire life. Now, nine out of ten days when I come home I get a big yell of DADDY and my perfect little girl running my way with her arms spread as wide as she can go. If I could bottle up that emotion and sell it, I would have more money than Bill Gates, and the world would be a better place.  In case i haven't already made it clear, my daughter has me wrapped around her finger. We golf, race, swing, have tea parties, and every time I look over she is copying everything I do. Wow what a fool I was, for even having an ounce of disappointment the day I found out I was having a girl.  

   Jumping forward to December 23rd, 2014: Ashlie came up into the bedroom holding a bag "You can open one Christmas present early". I took the bag and found a wrapped box inside. I continued to open the box and found a positive pregnancy test! We had been trying off and on for 6 months. She could just not keep it from me for another two days. February 19th, 2015 was the first date we could find out if it was a boy or girl, so of course (being patient and all) we had to go find out. On the drive there, I found myself with no emotion one way or the other. We went into this fancy theater room with Charlie.  Up on a big screen it showed we were having a boy and all looked great. Honestly, I did not care either way. I more so enjoyed Charlie's fascination with 'mommy's belly' and 'baby' on the screen.  This kid better be pretty damn impressive, if he wants to compete with her" I said to Ashlie on the drive home. 

    Friday, I went to work and had a very productive day. The prior three weeks I had been working 60+ hours. I was extremely close to be 'caught up' for the first time in a month, and had plans to turn off my email and just enjoy a weekend with out work. Before I could do that I needed to sneak out of the office, to meet Ashlie for her standard 20 week appointment / ultra sound.  Our little family sat in the lobby waiting to go back smiling and laughing. Once we walked into the office and Charlie saw the ultra sound screen on a big TV, she started jibber jabbering about "baby" and "mommy's belly".   The nurse started, and Charlie sat on my lap, talking about the screen, and laughing. The nurse asked if we had got our blood test done and got the results, we replied yes and everything came back negative. She continued on showing us the spine, and an arm. She then said I'm going to go back the spine in a minute if we can get him to move. I got the feeling something was wrong, waited 30 seconds and had to ask if she had found something to be concerned about on the spine...................... 

       At 4:26 pm April 3rd, 2015, life officially changed.  Our son was diagnosed with a serious birth defect called myelomeningocele, also known as Spina Bifida. I have maybe slept 90 minutes since then. I had heard of Spina Bifida, but never really knew what it was. A doctor came in and confirmed the diagnoses and gave us as much info as he could at the time (5:30pm on Friday of Easter weekend). Ashlie and I went on a drive and exchanged very few words. For those that don't know, Spina Bifida is where the spinal cord does not completely close up during the first month of the pregnancy. The amniotic fluid damages the nerves, causing paralysis, club feet, loss of bladder and bowel control. It also can cause learning disabilities to mental retardation, and sometimes a enlarged or abnormal head size. I got home and read every article, watched every youtube video, and searched for anything that could improve the quality of my sons life.  My mind has been going a million miles an hour. Wondering: How can I raise a little boy that I may not ever be able to golf with? Why would an innocent unborn child have to enter the world with physical or mental obstacles? How am I ever going to afford this? Should I sell our house since all of the bedrooms are on the second floor? I looked up the worst case scenario for everything, I had to know.  

   Ashlie had remembered recently seeing a baby, in a bumbo converted into a mini wheel chair, on Facebook. At the time she had no idea what was actually wrong with baby boy. She found that same post and discovered it was a 1yr old boy named Cole. He also had Spina Bifida. Ashlie only really knew Cole's father from real estate business transactions quite a few years ago, but somehow they were friends on Facebook. She wrote a message to Mark and Joann very late in the night about our situation. First thing in the morning we had a voicemail from Mark. I called him back and he instantly offered for us to come over and meet his son. He had been exactly where we were just 16 months ago.  Not sure if I was ready for that, I said I would text him back to work out a day and time. Ash and I decided that we needed to go. We met Cole at 4:45 PM today, just 24 hours after. I went from a very low place to seeing light at the end of the tunnel. Cole will have his challenges in life, but he certainly gave me hope. I would still be distraught if Mark had not offered to drop their plans and meet with us, so I am extremely thankful. 

So what is next? There is a surgery that can be done in utero (in the womb). It does NOT correct any of the nerves that have already been damaged, however it does prevent further damage. It has 50% success rate of improving the child's physical ability/life quality. Cole got this surgery, and one day he may be able to walk  The alternative is waiting for birth and they will do a surgery within 48 hours of birth (allowing more time for the amniotic fluid to cause further damage, and other complications in the brain).  With almost 20 hours of gathering as much information as possible, and meeting with Mark and Joann, we feel this surgery is the best way to go. 

What we are up against? This surgery can only be performed between 19 and 26 weeks of the pregnancy. On Tuesday, we will meet with another doctor, he will determine if we are a possible candidate for the surgery. If he does, we will be referred on to UCSF (University of California San Francisco). We will fly out there for 2 to 3 days of consultation and tests. If approved we would schedule surgery right away. Ashlie would be hospitalized for 2 to 4 days if all went well. She would not be returning home right away, they would want her to stay within minutes of the hospital to prevent a premature labor. They say about 3 weeks, however they could keep her all the way up to the delivery and even the due date.  There are many risks, however, if it means that our son, Ruger John Smith, has the opportunity to walk and live a semi normal life, we will sacrifice whatever it takes.  I know that he is going to be 'pretty damn impressive'. 

Please keep us in your thoughts and prayers.