🍃Our beautiful Liam's Story.
Darling friends! Let me tell you about the most beautiful child ever…do you have a minute? Go grab your yummy coffee, and come sit with me, so I can share a story with you. This perfect little boy surprised us when our little blondie was 3 years old! We were ecstatic to be welcoming our first baby boy into our family! His labor was fast, just like his sister’s, in December of 2010, and he arrived safely into our arms at 11:45 am. He had wavy, thick brown hair, green eyes, and the most stunning face! We named him Liam, meaning "strong warrior." From day one, our daughter, McKenna was completely in love with him! I even caught her carrying him at just 2 months old, down the hallway, ever so gently, but made me freak out nonetheless. She loved singing Mary had a little lamb to him, putting on plays for him, and lying next to him on blankets. It was the sweetest sight ever! Life was perfect.
When Liam was 11 weeks old, we were bathing him, and he began to have some unusual movements. He began to pull his arms & legs in, toward his center, and clicked the roof of his mouth with his tongue. He was calm the whole time, but mother's instinct told me to have my husband record it while I held him. You know how you take your car to the mechanic for a noise, and once there, no one hears anything? Yeah, that's the same reasoning I had. I knew nothing would happen if I took him to the doctor, and I'd look like a crazy person. Liam continued to do this movement for maybe 20 minutes, and so I took him to our local children's ER. He didn't do it again, but I had the video, and upon showing it to not one, but two ER doctors, they both told me it was reflux. Liam never did this with previous reflux, which he was already on medication for. He simply spit up. No odd movements. So, we returned home. The next day, I called our pediatrician, and told him what had happened. He didn't even ask us to come in, He gave me the numbers of three neurologists to call and make an appointment. I was nervous to hear that word "neurologist" but still did not think anything could be horribly wrong, considering how calm Liam had been. Also, four days had passed, and he had not done the movements again. But I made an appointment with a neurologist to see our sweet boy to make certain he was alright.
It was St. Patrick's Day, and we took Liam to his neurologist's appointment. Thankfully, he saw us quickly, and I thought phew! We'll be home soon! Of course, Liam didn't do any odd movements while in the room, but we showed the doctor the video we took a couple days before, of him in the bath tub. The doctor held my phone, and watched the video. Within seconds, he said, "This is infantile spasms, you need to take him to the ER for lab work, a spinal tap, and an MRI." I don't even remember if I said anything, we just gathered everything and headed to the lobby. I remember breading down and crying in the lobby, and a kind woman walking over to give me a tissue, and tell me "Everything will be ok."
The Children's Hospital of Atlanta was across the street, and the longest day ever began. Liam had labs drawn, X-rays, and a spinal tap, and it all came back normal. Every single thing was normal, no answers. Then he began to have seizures. That's what those odd movements were, they were seizures. They looked unlike any seizure you see in movies or read about. There are so many kinds of seizures! So, mamas don't let doctors dismiss you and tell you something is "reflux," (or something else that is common) when you know it's more. We are our child's advocate and their strongest voice. Always!
Liam had seizures the entire day, I don't know why, I thought it was because he was being prodded and poked so much. He was given so many medications to stop them. So many doses that he was sedated for 3 weeks. It was absolutely horrible. Our life was completely uprooted, Liam was sick. And our daughter was only 3.5 years old, and scared. Liam finally had his MRI, and his neurologist truly thought it would be normal, he was leaning toward Liam having a mitochondrial disease. But when Liam's MRI results came back, our lives changed forever.
Liam's MRI showed us incredibly heartbreaking news… that his brain was essentially dying. When you have a stroke, a MRI shows your brain as being gray, and the stroke is a tiny white spot. Liam's MRI showed his brain as ALL white, except for his brain stem. This was called cerebral atrophy. I sat there speechless, tears just kept streaming down my face. I didn’t comprehend what was happening to my 3 month old baby. Liam didn't have a stroke, he didn't have any trauma or injury. We had no answers for why this was happening to him. Labs showed no infections or genetic diseases. Cerebral atrophy is the cause of something, but we were at a complete loss. I was scared, and angry, and my heart was breaking into pieces.
When he awoke after 3 weeks, he lost his ability to hold his head up, or swallow. We were devastated by everything happening. We brought our sweet boy home, and our daughter was so excited to see him! The next several months were filled with me changing feeding tubes, measuring liquid meals, timing them so many hours apart, washing syringes, watching for seizures, having physical therapy sessions to gain muscle control and loosen tight muscles, starting speech therapy sessions to help him learn to swallow again. He was on seizure medications, brain health medications, supplements, pain medication, and so much more I can’t remember. We tried new diets to control his seizures, and we had him tested for every rare genetic disorder, which was my background, so there were many I told the geneticists to test for. He saw three geneticists, nutritionists, therapists, and his neurologist regularly. Every single test, including the test for mitochondrial disease, came back normal. But our days were made beautiful when he laughed, and smiled, and he did learn to swallow a little bit again. He did have surgery to have a G-tube placed for nutrition. He loved floating in the pool in the summer, feeling the wind on his face on the front porch, and when his sister would make him laugh!
Liam was hospitalized in October, around 10 months old, when he stopped breathing at home. That ambulance ride still haunts me to this day. He always seemed to stay in the hospital for 3 weeks. It was so incredibly hard on us. Michael would work during the day, while I'd be at the hospital, and then he'd get off work around 7, drive to the hospital to be with Liam, and I'd go home to spend the night with our daughter. During the day, she would be at school and home with her grandmother. She ate less and lost a lot of weight. The stress and unknowns were a lot for all of us. We tried our best to keep life as normal as possible for her. Liam was intubated in the PICU, and his third and fourth MRI showed that his cerebral atrophy was progressing. His doctors wanted to extubate him, but I fought and said no, it's not time, please give him time to heal. And, they listened, and followed my lead, until one day Liam pulled out his breathing tube!! He'd had enough I guess! He did well breathing on BIPAP machines, and a nasal canula, on finally on his own. He came home without even needing oxygen, leaving the doctors and nurses completely amazed!! Our strong little man! After all the hospital stays, his nurses became our family.
That was Liam's last hospital stay, until he had his 5th MRI in March, when he was 15 months old. It showed more cerebral atrophy progression, and I was just in a state of disbelief. Normally, he awakened from sedation within 10-15 minutes, but this time, it took 7 hours, and that's when I told the neurologist that was his final MRI. They kept giving the same news, and sedation was becoming more dangerous for Liam. We spent the next several months living life to the fullest with no hospital stays! We had fun outside in pools, having picnics, going to birthday parties, celebrating holidays, and cherishing our days together!
I wish you could've seen McKenna and Liam together. Their bond was unlike anything I've ever seen or will ever see again! She didn't care that he never walked, or never spoke, or couldn't play with her, or even hug her back. She simply loved him, because he was Liam! She had to grow up faster and it broke my heart what she had to go through. Liam would sometimes stop breathing after seizures, and I’d have to resuscitate him. Sometimes she’d see that. But she was always such a helpful sister, and loving Liam made her love everyone else even more. Her compassion is beautiful.
One week after we joyfully celebrated Liam’s second birthday, we tragically and very suddenly lost our beautiful little boy. It was one week before Christmas. No one could possibly know the length of time Liam would be here with us, but we never thought we'd only have two years with our beloved boy. And we never got answers for why this happened to him. None. I don't remember much from the days and weeks after. I was in such a state of shock and numbness, just like most are when you lose someone you love. I remember some things from the funeral, that I'd rather not, and I had nightmares often. I remember one thing McKenna said to me, when I told her about the night Liam passed. I told her it became incredibly windy outside, and I could hear the wind against the house, and the next morning all of our chairs outside were knocked over and across the yard. McKenna was 5 years old at the time, and told me, "Mommy, it was so windy because Liam was trying to get used to his wings, and they were sooooooo big, that he was knocking everything over with them!" I'll always remember her innocence & her sweet words.
While McKenna was at school, I'd sit in Liam's room, hold his stuffed animals, and write to him. I wrote everything I was feeling, sadness, things that made me smile, all to him, everyday for a year. It turned into a kind of memoir. 365 days of our life after we lost him. To this day, I hear his name everywhere I go. I’ll wait in line to pick up Finn from school, and hear a teacher call out “Liam” and my heart will drop. I’ll read his name in a book or I’ll watch a Liam playing at the playground and wonder why my Liam never got to swing. He never got to take his first step, or say ”Mommy,” or go to kindergarten, or even eat spaghetti, or birthday cake. I’ll never play soccer with him in the backyard, or teach him to drive, or tell him he can be whatever he wants to be. I’ll never dance with him at his wedding or hold his first child, or tell him how incredibly proud of him I am. I wonder why often. But when I do, I am filled with so much gratitude that I got to be that beautiful boy’s mom for 2 years. Many don’t get two years.
I suffered from a lot of PTSD and anxiety that I‘d lose someone else in our family. It was crippling. And yet, I was also filled with an overwhelming urgency to help other children. Because when we reach out to others to help them heal, our own broken hearts begin to mend as well. I knew this was my purpose, to help other children feel loved and never alone. To help families going through tragedies and other difficult journeys, to show them the pain & unknown doesn't last forever, and that joy does come again! It takes time, but it will appear again, and that darkness will fade. I finished that memoir, beginning with Liam's death, and ending with the birth of his baby brother, Finn Liam, who carries his courage and strength.
I created Feathers & Grace for our sweet Liam. I give portions of every single order back to dozens of organizations to help children in Liam's memory. To be the hands & feet of Jesus. I wish he could still be here with us, to hug his big sister and little brother, and see all the good being done because he showed us what courage & true love looks like. But I know he sees us, and protects us everyday, safe in the arms of Our Father. He'd be proud that children with special needs are being included, and seen, and loved for who they are. He'd be proud he's changing so many people's lives, both near and far.
I share my heart a lot. I encourage everyone to celebrate ALL the little moments, for they are more precious than the grand ones. Like when Liam starting smiling again, or when McKenna got to hug him for the first and only time. Those moments are forever treasured, and changed our lives, and how we want to live each day. I encourage everyone to love deeply, love those who seem different but really aren't so much. Spread kindness, and if we have the gift of speech, to say loving words to one another. I dive into hard stories because there is beauty present there too. We can all learn how to treasure this precious life from someone's story. I will always take someone's hand and walk with them during every season. It's all because of you, Liam.
I'm forever proud of you baby boy.
You are so loved, for eternity, my beautiful boy,
🕊He will cover you with His feathers, under His wings, you will find refuge. Psalm 91:4 🕊