“Your son’s umbilical cord was wrapped around his ankles. It was too tight. He didn’t survive.”
Those words still pierce my heart. Words that came out of nowhere ten years ago, just a few days after Christmas.
After a normal twin pregnancy, with my second set of twins, I lay on an operating room table with a doctor’s hands still working to close my incision as I tried to understand the words.
“Wait? He’s gone?”
And just like that my husband, Scott and I had to learn how to grieve. Nobody prepares you for the flood of emotions that will come. Tyler was born at 1:34 AM on December 30, 2005. For the next month, I woke up every night in time to watch the clock strike 1:34 AM and relived the night he was born. Some nights, his twin, Ashley, was the reason I was up, others it was just my internal clock.
I thought about how I would be holding two babies at this point. I grieved watching the clock.
I gained about 25 pounds during my pregnancy and 50 pounds after their birth. I grieved with a fork.
I prayed about how to celebrate Ashley’s milestones while still missing my son. I grieved over the future.
After Tyler’s death I had this uneasy feeling about the lack of notice we had. I never had time to prepare my heart for his loss. After his death I was consumed with thinking about other families who had walked this same journey. Because my family had been in the funeral business for most of my life, our funeral expenses were much less than they could have been.
I was constantly overwhelmed with questions.
“How did other young families pay for their child’s funeral?”
“How did they afford to bury their child?”
“Could we do something to help other families who will experience the death of their child?”
Just after Ashley and Tyler’s second birthday, I felt like I could take a breath without feeling like my heart was physically breaking. I could live again. I had figured out how to move forward with joy and be the best mom I could to my four living kids while still treasuring what almost was with Tyler. That’s when the phone call came.
“Ashley’s MRI shows she has a rare medical condition. She was born missing part of her spine and her coccyx.”
“Wait? What is a coccyx? She looks fine. Are you sure?”
And just like that my husband and I had to learn a new language. We had to learn how to live as the parents of a child with complex medical problems. A new type of grieving began. My first interaction with truly grieving Ashley’s diagnosis came ten months after first hearing her diagnosis of Caudal Regression Syndrome. My mom and I had traveled over 1,000 miles to spend ten days at a specialized hospital. For the first time, a doctor truly explained Ashley’s diagnosis and what the future would look like.
I grieved the change that was coming.
I grieved the unknown about Ashley’s future.
I grieved for other families with sick children that I was now aware of.
I grieved over the suitcase of medical supplies I was sent home with and a list of daily changes that would come.
After Ashley’s diagnosis, the questions kept coming.
“How do families go through sickness with their child without it bankrupting them financially or spiritually?”
“There has to be more we can do.” If I had a nickel for every time I uttered those words to my husband I would be rich.
My grief wanted me to stay focused on my own family and our healing.
You don’t have time.
You don’t have the resources to help anyone else.
After Tyler’s death and Ashley’s diagnosis I felt closer to Christ than I ever had before. I was so Heavenly minded, constantly thinking about Heaven. I wondered what my son was doing at the feet of Jesus. Then I asked God to show me through Scripture how to move forward, trusting Him for the future. That is so easy to do when life is going your way. Did I really believe the words in Psalm 139?
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:13-14
Then I would read in Exodus about Moses,
The Lord said to him, “Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord? Now go, I will help you speak and will teach you what to say.” Exodus 4:11-12
Did I really trust the One who formed Ashley and Tyler? Did I trust that His plan was best? Did I trust that He would help our family grieve?
I had to say yes! So here we are ten years later. Ten birthdays, ten Christmas holidays, ten first days of school, 3,650 days to learn how to grieve. I’m not sure I am any better at grieving. I do know that I decided I wouldn’t let Tyler’s loss or Ashley’s diagnosis be in vain. I refused to be bitter, I wanted to be better.
My husband and I turned those questions into something tangible and started The Do More Foundation. Instead of wondering if families had help, we can now offer them help. We can offer them advice on how to grieve (put down the fork is my first piece of advice). We walk with them as people who are right where they are.
Ten years later. I dig in daily and pray that God will give me patience to deal with Ashley’s condition. I pray that He will supply our needs. I pray that each Christmas and birthday that passes without my sweet Tyler will get easier. I pray that I will have understanding of the medical world, terminology and procedures that Ashley deals with. And then I thank God that because of His mercy and love, I don’t have to walk through any of this alone. He carries me.
Ten years later. Still grieving. But grieving with hope.
Scott & Lori Lassen are the founders of The Do More Foundation. They live in South Florida with their four children. To find out more about The Do More Foundation, visit www.thedomorefoundation.org