Loving Landan

Since I was a little girl, I always knew I wanted to be a stay-at-home mom.  Even as I was going through college, my long-term plan was to be at home with my children.  When my kids told my grandpa that we were pregnant with Landan, he chuckled and said, “I remember a little girl sitting in the back of my car saying ‘Grandpa, I just want to have a lot of kids’.” If you ask Andy’s family, when were engaged I told them 5-6 kids would be my ideal number.  Through the years our idea of what we could handle changed quite a few times, but we still ended up at 5.

Each of my kids has taught and continues to teach me different things.  But Landan’s story for me consists of my faith. The few years prior to having Landan, I felt that God had been putting things on my heart that just didn’t seem to fit in with where my life was, and I could never find a solution that made sense.  Until Landan.  The day we got his full diagnosis, all my puzzle pieces finally fit together.  Everything I’d been going through was preparing me for him.  Prior to Landan, Andy and I had decided we were done having children.  It is no secret that Andy had a vasectomy and that it failed.  God had bigger plans for us, and our story with Landan, as short as it was, was filled by God’s story.

Landan had a .00027% chance of being created as he was.  In science, that small of a percentage is basically as good as saying a 0% chance.  Science also has zero explanation for his extra chromosome and calls it an accident. God calls him perfectly created, woven by His hand.  I have no doubt that the things our society would have called disabilities would have in fact been the very abilities we saw Landan use to serve change. 

When I went into labor with Landan I panicked.  We were at home, a week prior to my early induction date, and we had zero expectation that we could make it to Sacramento without a baby coming roadside.  We drove to Modesto, unsure that they’d be able to take care of Landan as he needed and prayed for the best.  Lo and behold, while my water  had broken, labor didn’t kick in.  Two hours after Modesto admitted me, they decided to take the risk of transporting me to Sacramento.  I waited another two hours for an ambulance.  The second we hit the exit in Sacramento, labor started.  Landan was here an hour and a half later.  There is no doubt, given my history and the way this story played out, that God protected us that day.

We learned through our time in the Pediatric ICU that Landan had a medical story that created a perfect storm.  Every major illness put him in the heart of that storm, and multiple times God delivered him from it. Landan’s story didn’t end the way I would have chosen, and acceptance is something I will always struggle with.  But I do know that through my time with him in the hospital I saw my prayers answered countless times.  I saw God’s strength in so many people and I learned more than I ever could have imagined.

They say in the ICU that the goal of their care is time – manage one’s symptoms long enough to allow the body the time it needs to heal.  We found ourselves with a lot of time on our hands – something we were no longer familiar with in our household.  We live in a society that tells us time is meant for productivity.  To grind.  If you have time on your hands, you’re missing out on something.  The time we had with Landan, when we had nothing to do but let him sleep in our arms or sit next to him holding his hand, didn’t produce anything tangible.  But they were the most productive moments I’ve ever had in my life.  Time being.  Time loving.  Time soaking in my sweet boy.  We cherished our time with him not because we felt we had a limited amount of it but because We realized the blessing of such an invaluable gift.  

Landan taught us to find the joy in our hardships. Spending months in the hospital with him, having our family split, and watching him struggle with his health will likely be the hardest thing I’ve ever endured – at least I hope it is.  I’ve experienced anxiety and panic attacks and have images burned into my memory that haunt me.  But there was joy in every day I was there.  It didn’t always look the same, and sometimes it was a little harder to see.  My mom once called while I was holding Landan.  I had been at the hospital for a fairly decent stretch of time and was really feeling the burnout.  It was also a time he was recovering from some pretty bad health episodes and every little alarm that went off was setting me on edge.  She called back after our initial call to remind me that even though things were tough she could still see the joy in the way my face lit up when I showed her I was holding Landan.  Loving Landan required us to do hard things, but it was so easy to do. 

Landan also taught us to reevaluate our expectations.  His Down Syndrome diagnosis prepared us to meet him exactly where he was.  No timelines, no milestones.  Just Landan for whoever Landan was then and there.  His hospital stay only reinforced it.  In all the time I sat with just my thoughts, I thought about the number of times my expectations got in my own way.  The number of times I predetermined how an event or vacation would take place, only to miss out on some of the fun, lost in the disappointment of something different than what I expected.  And while this was something I’d been working on, Landan taught me the beauty of letting it all go. 

Landan broke expectations that science and studies couldn’t explain his entire life.  Babies with Down Syndrome often experience intrauterine growth restriction.  Landan was 9 lbs 2 oz when he was born at 37 weeks.  We were told to expect a 3-4 week NICU stay.  Our neonatologist told us that she had only ever seen one child with Landan’s diagnoses leave at the 2 week mark.  Landan made it out of the NICU on day 11.  He came home without oxygen and without a feeding tube – things rarely seen in this population of babies.  After his first intubation, they expected him to have acquired an oral aversion.  He did not.  They told us after his second surgery to expect him to remain on the ventilator for up to 5 days.  He was off it that night.  We were always given a caveat when expectations were discussed with us – but it’s Landan, and we all know he does things his way.

While Landan was in the hospital, he fought off RSV, Acute Respiratory Distress Syndrome, Covid, 3 rounds of pneumonia, 3 bacterial blood infections, and he was beating his fungal blood infection.  He endured 3 open heart surgeries, over 100 xrays/ultrasounds/echocardiograms, and over 2000 blood tests.  He required about 2 dozen blood transfusions and was intubated for a total of 51 days.  When I write it out like that I always second guess that he had any kind of happiness in his life. I know through being with him that he did.  Despite all those numbers, Landan had many days where he was healthy.  And he was such a happy boy.  He loved to hold hands, to have his bed shook as he was falling asleep. He loved to sit in his chair and study his surroundings.  He loved listening to AC/DC and Ozzy.  He loved being held straight up and down and looking up into my eyes.  Seeing me always put the biggest smiles on his face. There was nothing better than his smile.  Landan fought harder than any person I’ve ever met and his resilience will live with me. Despite his daily fight, Landan lived.

Andy and I have gotten some really flattering compliments about how we appear to have handled everything we went through over the past year or so.  But for us, it always came down to one thing – God.  I’ve already mentioned how my body and mind were failing me throughout this experience.  I’ve never felt so out of control of not just a situation, but myself.  But every time I arrived at that hospital, God strengthened me.  Every time we were faced with a situation or decisions we were unequipped to handle, God led us.  Every time we questioned why we were in this situation, God put someone in our day that reset our resolve.  I have been asked if Landan’s life tested our faith.  For us, it only strengthened it. 

Landan was a fighter.  He was truly unique.  And he was meant for big things.  Andy and I were so excited to watch him grow up in this community that we love. We knew he’d be part of amazing things.  I don’t know that God’s plan was exactly what happened.  Maybe it was.  But the way our community has rallied around us, the words of support, the meals, the donations, and most importantly the prayers that we and Landan received will never be forgotten.  He moved within this community in a way we couldn’t have fathomed. The day after he passed, I was asked if part of Landan’s story could be shared in a fight for the life of fetuses with a Down Syndrome diagnosis. It was a great reminder that Landan’s story isn’t over.  I don’t yet know what it looks like.  I have no way to sum up Landan’s life.  I don’t have the words to sum up how I feel.  But I’ve always believed there’s a beauty in the simplicity of the way children see things.  So for now I’m sticking with the words of Rowan – I love you Landan.  Thank you God for keeping him.