Our Keepsake Journal is Here! 🎉

I will never forget the day I received a phone call that my biological father lost his battle with the horrible and rare Huntington’s disease. It’s a wretched fatal genetic disease that every child of a carrier has a 50/50 chance of inheriting. It has no cure. It is best described as having ALS, Alzheimer’s, and Parkinson’s diseasesimultaneously. Once the symptoms appear in mid-adulthood, you have about 10-15 years to live.

My father was in and out of my life because of his decline and battle with the disease. We received that knee-weakening phone call just days before my high school graduation and less than two years later, I married my high school sweetheart. We laid a white rose on the altar in memory of my dad, but I couldn’t help but wonder how different things would be today if the disease was not part of his life.

Losing my dad at this age left me doing a lot of reflection in my 20s.

A lot of grieving for something I would never have and a relationship I would never know. I want to turn back time and be there holding his hand when he took his last breath. I want to turn back time and not be afraid of his pain or of this disease. I want to tell him I love him again and hug him whilst he struggled to breathe and eat via a feeding tube. His symptoms overtook his 30s.

As I am now approaching my 30th birthdayI have two children and am considering a thirdI lie awake at night, trying to choke back the tears as I beg God that I don’t miss seeing the milestones in my children’s lives.

I want to be there when my son has his heart broken from the girl he gives it to first. I want to give him a bear hug and the good old “there are more fish in the sea” spiel.

RELATED: Dear Son, I Called You Baby First

I want to be at my daughter’s ballet recital without the side effects and physical changes that HD brings. I will never forget the way the neighbor kids made fun of my dad when we stayed with him when I was younger. “Why does your dad have a three-wheeled bike? Your dad is so weird.” Why are kids so mean? Better yet, how can parents educate their children on how to treat others who are different and struggling?

I want to go prom dress shopping with my daughter and tell her she is the most beautiful girl in the world. I want the tears to graze my cheek as I see her beauty radiate from her heart in the way she treats others.

I want to be the loud and obnoxious mom at my son’s baseball games as I squeal “That’s my baby!” when he hits his first home run.

I want to help my children tour colleges and consider all the different options to see their dreams come to fruition. Recording artist, military officer, counselor, chef, teacher, firefighter, nurse, whatever their hearts so desireI believe in them and want to cheer them on.

I want to encourage my son to try out for American Idol if that’s what his heart so desires. I don’t want to miss a single coffee shop acoustic performance if that’s what he does to kickstart his music career.

RELATED: Keep Dreaming, Darling Daughter

I want to have a dance party in the kitchen when my children receive a phone call that they landed their first jobone they were really excited about.

I want to be there to encourage them when they bomb a test even though they studied hard and to tell them never to give up.

I want to be there for the midnight conversations when they ask questions about God, faith, how to help someone in need, or who they should marry.

I want to see their faces on the day they marry the love of their life.

I want to be there when they creatively announce their first child is on the way. I plan to be up because I cannot contain my excitement, hugging their necks before they even have a chance to finish telling us their good news.

I don’t want my children to wonder if they have this horrible disease. I don’t want them to question getting married or starting a family because of the impact of Huntington’s disease. It’s brutal.

Huntington’s disease has taught me a lot of things. It has challenged my faith, left mascara-stained tears on my cheeks for hours, and left me curled up in a chair too many times to name because I have some big decisions to make regarding testing and plans.

One thing I DO know . . . my children will know their mom loves them regardless of any medical diagnosis.

My children will know their parents are their biggest cheerleaderstoday and forever.

RELATED: I Can’t Always Be Right Next To You, But My Love Will Remain

My body may tighten and weaken every time I think about the possibilities the future may hold; however, I do know we cannot let what-ifs change the way we live and love right now.

I pray I will be dancing to some cheesy, country song with my son on his wedding day and helping my daughter zip up her beautiful white gown when she marries the love of her life. For now, I will be screaming “That’s my baby!” in the stands at t-ball games and cheering them on as they build Play-Doh towers and conquer their fear of sliding down the giant slide at the playground.

May we all let our love live louder and larger than our fears for the future.

So God Made a Mother book by Leslie Means

If you liked this, you'll love our book, SO GOD MADE A MOTHER available now!

Order Now

Check out our new Keepsake Companion Journal that pairs with our So God Made a Mother book!

Order Now
So God Made a Mother's Story Keepsake Journal

Lizzy Christian

Lizzy Christian is a toddler-chasing, coffee-sipping, firefighter wife, and vacuuming enthusiast who has a passion for writing. She is the founder of the Fire Wife Chronicles, which is geared on topics of motherhood, marriage, faith, & first responder family life. Lizzy received her undergrad in Crisis Counseling from Liberty University and her Master of Arts in Human Services Counseling – Crisis Response and Trauma from Liberty University’s Graduate School. She is a two-time NYC Marathon finisher and avid runner, and former School Counselor and Athletic Director. Lizzy married her high school sweetheart and together they have two sons and a daughter. Visit www.lizzychristian.com for additional resources and upcoming projects. 

To the Miscarriage Mom with a Broken Heart on Mother’s Day

In: Grief, Loss, Motherhood
Woman holding single pink daisy

Dear Mama, I want you to know—you aren’t alone. Not even by a little bit. Not ever, but especially not today. There are hearts like yours breaking all over the world today. Whether you are grieving one loss or multiple. Whether you already have a healthy family or this would have been your firstborn. Whether you were family planning the natural way or needed a little help from science. Planned, unplanned. Chemical pregnancy, missed miscarriage, late-term loss. Those details don’t matter today. Today, all our hearts hurt the same. We are all part of the same club we never asked...

Keep Reading

Call Your Mom for Those of Us Who Can’t

In: Grief, Loss
Sunset over water, color photo

I never pictured myself without my mama at only 26 years old. I never saw a life when I couldn’t just pick up my phone to call you after the worst day at work. I never thought I would be crying over one of your recipes at Christmas time because I just can’t make it taste like you did. I never thought I would be jealous when I heard my friends talk about meeting up with their mom for a girl’s day. Here’s the thing, yes I knew it would eventually happen, but I pictured the both of us a...

Keep Reading

Dear Cancer, I Thought We Paid Our Dues

In: Grief, Living, Loss
Mother and grown daughter, smiling, color pboto

This is not how it was supposed to be. I am most certainly not made for this. God, why are you forcing me to travel this road again? When my father died after a long, grueling battle with Stage 4 base of the tongue cancer, I very naively thought, bye cancer. Our family paid our dues, and cancer was never to be seen again. I put on a brave face and began to write about my dad’s cancer journey. I believed the more I poured my heart onto a piece of paper the more cancer would stay away for good....

Keep Reading

A Grandmother’s Legacy Never Dies

In: Grief, Loss
A group of kids, old color photo

My grandmother was a Christian puppeteer. She would play the parts of brother and sister, Wilbur and Willette, race their dog King back and forth, and yell in their mother’s scratchy voice from “off stage,” all from behind her big blue curtain while my aunt talked to the puppets and sang from center stage. Sometimes I’d sit on a folding chair behind the curtain with her. Sometimes I’d watch from the audience. From churches to the Iowa State Fair to summer camps, I witnessed hundreds of children give their lives to Jesus. She wasn’t just my grandmother, she was a...

Keep Reading

Losing a Brother, Understanding My Mother

In: Grief, Loss
Sad woman looking out rainy window

At the end of his life, I didn’t like my brother. That feels awful to say. It probably is awful. My brother died at 35 years old of liver failure. It was a long, ugly death full of prolonged hospital stays and frustration. Even before he was relegated to life support and dialysis, the disease changed him. Maybe he knew what was coming, I don’t know. When he did talk, he was rude or short or full of insults. He had withered into a mean, isolated version of himself. Mostly, I was angry at him for refusing to change. I was...

Keep Reading

A Funeral, a Baby, and Whispers of Love

In: Grief, Loss
Newborn baby next to a purple onesie about a grandma in heaven

I woke up and saw a missed call from the hospital. I called her room, no answer. I  called the front desk and was immediately transferred to the doctor on rotation. My mother had crashed and was in the ICU. He asked if I wanted CPR if she coded. I needed to make a decision and come into the hospital as soon as possible. It was the wee hours of the morning, and I made it to the hospital fairly quickly. I grabbed my mother’s hand—it was ice cold. The nurses were talking to me, but I had tuned out,...

Keep Reading

I Obsessed over Her Heartbeat Because She’s My Rainbow Baby

In: Grief, Loss, Motherhood
Mother and teen daughter with ice cream cones, color photo

I delivered a stillborn sleeping baby boy five years before my rainbow baby. I carried this sweet baby boy for seven whole months with no indication that he wouldn’t live. Listening to his heartbeat at each prenatal visit until one day there was no heartbeat to hear. It crushed me. ”I’m sorry but your baby is dead,” are words I’ll never be able to unhear. And because of these words, I had no words. For what felt like weeks, I spoke only in tears as they streamed down my cheeks. But I know it couldn’t have been that long. Because...

Keep Reading

We’re Walking the Road of Twin Loss Together

In: Grief, Loss, Motherhood
Mother and son walk along beach holding hands

He climbed into our bed last week, holding the teddy bear that came home in his twin brother’s hospital grief box almost 10 years earlier. “Mom, I really miss my brother. And do you see that picture of me over there with you, me and his picture in your belly? It makes me really, really sad when I look at it.” A week later, he was having a bad day and said, “I wish I could trade places with my brother.” No, he’s not disturbed or mentally ill. He’s a happy-go-lucky little boy who is grieving the brother who grew...

Keep Reading

Until I See You in Heaven, I’ll Cherish Precious Memories of You

In: Grief, Loss, Motherhood
Toddler girl with bald head, color photo

Your memory floats through my mind so often that I’m often seeing two moments at once. I see the one that happened in the past, and I see the one I now live each day. These two often compete in my mind for importance. I can see you in the play of all young children. Listening to their fun, I hear your laughter clearly though others around me do not. A smile might cross my face at the funny thing you said once upon a time that is just a memory now prompted by someone else’s young child. The world...

Keep Reading

The Day My Mother Died I Thought My Faith Did Too

In: Faith, Grief, Loss
Holding older woman's hand

She left this world with an endless faith while mine became broken and shattered. She taught me to believe in God’s love and his faithfulness. But in losing her, I couldn’t feel it so I believed it to be nonexistent. I felt alone in ways like I’d never known before. I felt helpless and hopeless. I felt like He had abandoned my mother and betrayed me by taking her too soon. He didn’t feel near the brokenhearted. He felt invisible and unreal. The day my mother died I felt alone and faithless while still clinging to her belief of heaven....

Keep Reading