Writing my letter to Landon was hard. Trying to put 8 years of love, pain, and things I’ve wanted to say to my precious child into words was difficult, but its time to continue, and to tell Blake what is in my heart and what I want him to know.
It occurred to me that all three of my boys are at the same place in their cognitive development, none being able to express their thoughts, feelings, and needs in words. Even without having this ability, Gabriel not quite yet, and Landon or Blake, who will never have it, my boys have taught me so many things about life, love, and happiness that go so far beyond any words that they could possibly utter.
And so, I want to use my words, regardless of whether they are heard or understood, to express my love and gratitude to my sons.
My first letter is dedicated to my beautiful, first born son.
This weekend has been so busy! Gabriel turned one yesterday, and we had a wonderful time celebrating his first year with our family and friends. I still can’t believe it’s already been a year since he came into our lives. He is so full of personality, so smiley, and at times so stubborn, but he has been such a blessing to our family and I couldn’t imagine our life without him.
I have to admit though, at times I feel like a first time mom with him. After going through what we have with Landon and Blake, I find myself worrying about things that I don’t think I would, had we not been through so much already.
I tried quite a few times yesterday to pick up where I left off in the story of our journey. Nothing seemed right, and I was so frustrated, and then I realized…I can’t continue when I’m feeling so stuck in the grief of the moment. There is too much weighing on my mind NOW to even think about going back and taking on that pain as well.
There is no other way to say what’s been on my mind so often right now: we are losing Landon, and that is becoming so real to me right now. Since diagnosis, we have known that this stage would be coming. I have been watching it happen to other kids in our MPS family, but because Landon and Blake had remained largely unchanged since diagnosis, it didn’t seem as real. It was easier to feel removed from the effects of San Filippo. Over the last year, all that has changed for Landon.
There is still so much of “our story” to be told, and believe it or not, it’s not all sadness. Many beautiful, happy, and wonderful things have happened between diagnosis and today, I plan to share them all; the good, the bad, the ugly, and the beautiful. The only way for something to be meaningful to someone on the outside is to be real, to be honest, and to really bare your soul regardless of how that may be perceived.
I decided a need to take a brief pause in telling my story. The beginning, and really the first year was so damn hard, and it was long, and much of it (though not all) was terribly painful and trying to even just relive it all at once, is overwhelming. Looking back, I still don’t know how we all survived it. I really don’t. I guess you find your strength out of necessity. You go into survival mode and hope and pray that’s enough.
As long as I live, I will never forget the utter despair or the sickening feeling that consumed me the day that our lives changed forever. Even now, reliving it through these words has my stomach in knots. As hard I as I try, I don’t know if I will ever accurately be able to put to words the way it feels to have everything ripped away in a split second by three letters. It’s a devastation I would not wish on my worst enemy.
As I mentioned, the physical therapist, Jann, at Landon’s school had arranged for her and Landon’s teacher, Miss Iverson, to come over to our apartment to talk about what she thought may be going on with Landon. As soon as they walked in the door, I could feel it. This was serious. Landon’s teacher was a very sweet young woman, not much older than me. I’ll never forget the look on her face. She looked at me with eyes full of sympathy, and appeared to be very nervous and on the brink of tears.
They came into the living room and sat down. Jann (PT) had some papers in her hand. She handed them to me and asked me to look at the pictures on the page. I had to do a double take….the little boy on the paper could have been Landon’s long lost twin. The resemblance was uncanny. I then noticed that website in the upper corner of the paper had been scribbled over with a permanent marker, along with every mention of the name of this disorder.
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.