All stories have a beginning. I think it’s human nature to always hope that they will also have a happy ending. At this moment in time, I can’t say that this will be true for ours, but I am hopeful that some happiness will be found in the darkness that inevitably lays ahead of us.
And so here is where our story begins.
I became a mother at a time in my life when I was still struggling to find the person I was, the person I wanted to be. On July 16, 2006, it all became crystal clear. at 12:02 am, after enduring the most excruciating pain I had ever felt, it happened. The woman I would become was born, as was the most beautiful thing I had ever seen: my Landon Milloy. He was perfect in every way; with a head full of wild black hair and big blue eyes. Everything that ever seemed important to me before this moment, evaporated into meaninglessness. This beautiful little boy was now my world.
We grew together. I learned what it truly meant to care for someone more than anyone or anything else. Every spare moment was spent watching him, playing, and helping him meet milestones, while anxiously anticipating the next ones to come. Time flew, and he grew into a busy toddler, learning to run literally the day after he walked for the first time. He was a tornado of giggles and smiles.
Things were not always perfect. Landon turned two, and still had no words. I remember being worried even then. Physically, he met all his milestones, but still….there’s was a fear inside I didn’t fully understand but could not quiet. We decided that speech was the answer. I had taken him to a few different doctors, none of whom seemed concerned that a two-year old was not speaking. It was obvious these medical professional had decided I was young, dumb mother who was worked up for nothing and that some speech therapy should pacify my concern.
We hit the one year mark with his speech therapy. No progress was made. Not one word. We attempted to do a hearing test, and the results were inconclusive. Landon was now three, and his “busy toddler” moments were turning into constant and uncontrollable chaos. He could not be deterred or reasoned with. No matter what we did, no matter how much energy we tried to burn, he was constantly “on the move.”
By this time, I was pregnant again. I was working, and spending all my time not working chasing after Landon, and I was exhausted. Frustrated and not knowing where to turn next, we called our special education unit. We took him in for evaluation to see if he met the standards for special education. They video taped the meeting. Visiting with the team was next to impossible as Landon was throwing toys around, screaming and laughing wildly and attempting to write on every surface in sight.
We got Landon enrolled in special needs preschool and he was to start the second week of October. One week before his start date, Blake Byron was born. In stark contrast to the traumatic experience that was Landon’s birth, Blake’s was perfect. Everything went smoothly, all was calm, and once again, at 3:43am on October 8, 2009, I was a mother. My second beautiful, baby boy was now in my arms and the happiness of new motherhood was intoxicating. This high was very short-lived. Shortly after his birth, it became apparent that Blake was having a hard time breathing. He was doing what the doctors called “retracted breathing.” I had fallen asleep shortly after he was born and woken up a few hours later with news that would be the start of the most horrific two and half weeks of my life up until that point. Because we lived in a small town that did not have a NICU, Blake would need to be taken by ambulance to a town 90 miles away. His breathing was becoming more labored and our doctor did not feel they could give him what he needed. Six hours after giving birth, I was checking out of the hospital and walking out without my baby. It was the emptiest feeling in the world. I cried the whole way to the new hospital.
When we arrived, we were informed that Blake’s condition had worsened. They were unsure as to *why* he was having difficulties breathing, but had put him on a Bi PaP machine to assist him, as he was exhausting himself trying to breath. The next morning, things took an even worse turn. Blake’s lung had collapsed from overexerting himself, and this caused him to need to be put on a ventilator and a PICC line was placed. Seeing my newborn baby covered in medical equipment and having a machine breath for him was unbearable. I was inconsolable. To think that I may lose my baby was more than I could comprehend. This couldn’t be real. This could not be happening. He looked so out-of-place in the NICU, at 8 pounds 7 ounces and 19 3/4 inches long, he looked like a perfectly healthy baby. But he wasn’t. He was teetering on the brink, and fighting to survive. The most frustrating part, was the doctors didn’t really know *why* he was so sick. He would a have a good day, and the next day things would be touch and go again. It was a rollercoaster ride that I desperately wanted off of. I spent all my time at the hospital, just looking at my baby. I memorized his face. I whispered to him, cried silent tears while the nurses cared for him, and begged God not to take my baby. Because he was so fragile, we weren’t allowed to touch him, as any unnecessary stimulation would cause him too much stress. It would be 10 agonizing days before I held my baby.
Slowly, he improved, and after 16 of the longest, most emotional days of my life, we took Blake home to meet his brother. For Landon, meeting his brother was love at first sight. He was absolutely in awe of Blake. I was exhausted, but so happy to finally have my family all under one roof. Life started to feel normal again. We got Landon started in his preschool and he absolutely loved it. We were hopeful that having some structure and classroom time would help to improve his increasingly difficult behavior and attention span.
Learning to balance the needs of two children, and work was interesting, to put it mildly. School did not seem to be making much of a difference for Landon and his behavior, and not being the center of mommy’s universe anymore seemed to escalate his issues. He was out of control. I don’t even think I can put into words how totally out of control he was. Screaming (albeit happily) almost constantly, digging everything he could reach out of every cupboard, drawer, dresser, closet, and even the fridge! Eating everything insight, wether edible or not. It was a nightmare, and as much as I loved him, I was at the end of my rope. Another new issue became apparent; Landon and Blake could never been left alone together. As I said, Landon LOVED his brother, but because his understanding was limited and he didn’t know his own strength, he was extremely rough with his “love.” It seemed to be one thing after another, and was I overwhelmed and felt helpless without a solution. I had taken Landon to different doctors in town hoping for an answer. I was beginning to become seriously concerned that Landon may be autistic, and that was the cause of the behavior and learning difficulties. I was told by all of them to stop worrying, all kids learn at their own pace….one even said he was just being stubborn! I began to feel as if we may never know what was going on with Landon, but my gut would not let me accept that “it was nothing.” As much as it hurt, I knew that something was not right.
On top of the issues with Landon, working full time, and trying to deal with a relationship with the boys’ father that was deteriorating rapidly, Blake was 5 months old and had already been hospitalized twice since coming home from the hospital with RSV like symptoms. Because of his rough start in life, cold and flu season was scary and dangerous and his reduced lung strength left him unable to fight anything he caught. I was barely keeping my head above water. After his second hospital stay at the end of March 2010, our doctor was concerned and wanted Blake to see a pulmonologist to rule out cystic fibrosis. I was scared to death, and it would be an entire month until we saw the specialist and got our answer. Knowing what I do now, cystic fibrosis would have been a walk in the park and a diagnosis I would have embraced.
Our answers would come in April 2010. The physical therapist at Landon’s school was an amazing woman who I had coincidentally lived next door to growing up. She called one day and asked if I could send some pictures of Landon from birth until present day to school. Not knowing why, I agreed and didn’t think much of it. A few days later she called and said she thought she had an answer to what was going on with Landon and was wondering if she and Landon’s teacher could come over to talk about it. I happily agreed, ready to finally put nearly two years of wondering and frustration to rest. That day in April 2010 would end up being the worst day of my life. I thought I was prepared for anything. I could not have been more wrong.