I Lost My Daughter. Even though She is Alive, I Lost Her, and I Grieve Her all the Time

Written by LeAndra Monsen

Updated on January 26, 2022

When I found out I was pregnant it was a moment filled with many emotions: Mostly scared and happy all rolled into one. I was eager to take on the task of giving this new little person a life that I had only dreamed of as a young child.

I mapped it all out in my head, I knew in my heart she was a girl. I’d dress her in the cutest outfits, I would finally crack down and learn to French braid to maintain her golden locks, I would just melt when she said “Mama”, I would melt even more when she said “Mama, I love you”. I knew that phase would quickly turn into tantrums, terrible twos, picky eating, then into a scared second grader learning to be independent, fighting over why I don’t allow sleep overs, banning makeup when she is suddenly 12 and wanting to look 15. In an instant she would be 15, thinking about dating, boys, what to wear, what not to wear, would she be into music or sports? Would she hate me more than she loved me, or would there be an equal balance? I had dreams of senior prom, getting her the perfect dress, all dolled up and ready to finish her high school year in style. Finally, after years of ups and downs, we would be friends. She’d be anxious to get to college, but call me the first night, homesick. She would come home for break talking about the boy in Chem, the one who she couldn’t stand. How annoying that he is always trying to talk to her during her most difficult class. I tell her to maybe not run so fast after class, because maybe that’s the only time he can catch her. I don’t realize that this sends her straight into the arms of the man that becomes her husband. She does what mama suggests, waits after class, he captures her heart with laughter.

Sophomore year she is engaged, we are wedding planning. I am overwhelmed. How did this happen? I ask myself. How did you grow up so fast? I hug my daughter tightly over the mess of invitations. She laughs, “Mom, I’m just getting married, I’m not going away forever”. We curl up on the couch, flip through her photo album and I give her all the advice I could fit in one night, for a lifetime about all things marriage and family. Her wedding day would be nothing short of a fairy tale. A few years later, I have grandbabies running around the house as I babysit for date night. They look just like Abby and I am suddenly in a time warp to 24 years ago when she was giving me a run for my money. As I get older she is around more, my grandbabies are now older. They help tidy the house and mow the lawn. One thing stays the same, those grandkids still hover in the kitchen waiting for the cookies to come out of the oven, hot and fresh, with a scoop of vanilla ice cream. Abby looks over at me, my grey hairs have started to take over. How did this happen? She asks herself. How did you grow old so fast? She hugs me tightly, almost knocking the tray of cookies from my hands. I laugh, hug her back and she keeps her arm around me. I feel the love. Before I know it, I have great-grand babies. I watch as Abby holds them close to her chest. She brings the newest addition over to my chair, I hold her gingerly, but only for a moment before my hands start to ache. She looks down and sees that I am not feeling well. She drives me to the doctor. I look out the window, trying not to cry. How did this happen? I ask myself. How did I get so old? I start to cry. “Mama what’s wrong?” Abby asks, reaching for my hand. “I am so sorry I am such a burden on you” I admit to my beautiful daughter, whose grey hairs are starting to show. “Oh mama, it is my turn to take care of you” she says, patting my hand. Years go by, and I am watching Abby from Heaven. I am in awe at how my family has grown, what she has taught her children and what their children are teaching their new babies. How did this happen? I ask myself. How did our life go by so quickly?

That was everything I pictured my life as Abby’s mom would be like. But it ended up more like this…

It turned out I was having a girl. I got that part right. I did dress her in the cutest, the best and most adorable girly outfits I could find. I was prepared for her to start crawling, walking and talking. But something wasn’t quite right. She didn’t look at me. Ever. I took her to the doctor, my heart telling me what was in front of me the whole time, but my head refusing to believe it. At four months old Abby was diagnosed with Optic Nerve Hypoplasia. She is blind. Abby cannot see even the tiniest shred of light. She lives in darkness. At five months old she was diagnosed with Septo Optic Dysplasia and Non-24 Disorder. Now she has growth issues, is always sick and has severe Autism. She wasn’t crawling, she wasn’t walking, she wasn’t talking. How did this happen? I ask God. I cry myself to sleep. I suddenly lost all the memories and hopes of a normal life with my daughter. I didn’t know it then, but I was grieving and it was O.K. I was ashamed that I was grieving my daughter, as if I had lost her, when she was there as beautiful and happy as ever. Her golden blonde hair grew fast. I couldn’t French braid it. She wouldn’t let me, it would send her into a violent frenzy. I would hold her close so she wouldn’t hurt herself. Finally another doctor visit to confirm autism. I grieved again. She was a joy most of the time as a toddler. She laughed. She would scoot around the room, using her killer senses to detect toys and find mama. She couldn’t say my name, she couldn’t say “I love you” but she spoke louder than words, in many ways. She would calm instantly once she was in my arms. Sometimes, it took a few hours, or all day, of crying and hitting, before she would settle into my arms, sigh and let me hold her until she drifted off to sleep.

We didn’t play tea party, dress up. She didn’t sneak into my makeup and slip on my shoes. Abby was definitely a picky eater, I got that part right. But her disability made it to where she couldn’t eat all the best and right foods. When she gets sick, she ends up in the hospital, doesn’t eat or drink. We almost lost her several times. She is almost in the second grade, I still change her diapers. She still doesn’t talk, she finally has learned to walk. What an amazing victory!!! She now takes herself to her room to play when she is overwhelmed, but can also follow the kids around and hurt them when she is not happy. I still have to feed her all her meals. I see her now and think, How did this happen? How did you grow so fast? She can’t see my face, mixed with sadness and happiness. I have her. I have her beautiful smile, or darling laugh, the midnight drum sessions on her bedroom wall. I have her innate ability to bring a loving spirit into our home. She has had over 16 hospitalizations in her short 7 years. I have pleaded with God not to take her. She has had seizures that have altered her moods and made her violent. I am angry sometimes, not at God, He’s given me the understanding and the WHY, but at how she suffers, how we all suffer. I saw a little blonde seven year old girl at church. She ran up to her mother and told her all about class, her new teacher and the treats she got. Someone hit me in the stomach…well you would have thought someone did. I was grieving Abby once again. Fast forward a few years, when all the other children are living “normal lives” (how normal can their lives be when they have disabled siblings? Never quite.) I am still changing Abby’s diapers, still feeding her, still preventing her meltdowns, and self injurious behavior. I refuse to believe she doesn’t talk. I have faith and hope that she has learned a few words or more. The children start graduating high school, Abby is the oldest, but she will never leave home. We celebrate her senior year, the best we can. As the other kids leave home, and my hair starts to grey, I am still feeding Abby, I am still changing her diapers, I am still grieving my daughter. As we get older, Brad and I realize that we won’t be able to keep this up. My heart sinks, fear sets in How did this happen? I ask myself. How did I get too old to help you? I ponder, as I brush Abby’s hair. You see, parenting a severely handicapped child is a lifelong challenge and battle. It’s full of joy, sorrow, despair and hope. I always think that I will be able to care for Abby forever. But what if I get too old? Who will love her enough to take care of her until her life on earth is over? The doctors have told us she will not outlive me. But again, I have hope. I have faith. I cannot imagine my life without my daughter, no matter how hard it may be at times.

Having a special needs child is a lifelong grieving process. Each new age, each new milestone or major life event that DOES NOT get to happen for your child, is a painful reminder of what you lost due to their disability. This does NOT make you a bad person; it makes you human. However, because of this experience, because of this loss , yes I said loss, you and I have gained so much. We have learned the value of true and unconditional love, patience and joy. Yes JOY. We have learned to find joy in the simple things, in the small moments, we find joy when our children do EXACTLY what the doctors said they would not do. Our hearts are fuller, our other children have learned how to accept different, embrace and love those around them living with lifelong disabilities. We as mothers and fathers have learned what the pure love of Christ means; A love that is pure in its intent, selfless, patient and above all a sacrifice.

Yes my life with Abby is not what I imagined 8 years ago, when I was pregnant. Or even right after she was born. It is way more challenging, exhausting, and overwhelming. But I have her. She is mine, in all her deep bellied giggles, countless hours of wall drumming, piano playing and late night radio tuning, she is mine. In all her fits, meltdowns, seizures, messy diapers that end up all over her floor, in all her biting, hitting, scratching, sickness and near deaths, she is MINE.

If you’re a parent of a special needs child or children (I have multiple in my home) please take this one thing away from my post: The grieving process of losing your child to a disability is continuous and totally appropriate. This does not mean you love your child any less. This does not mean you are a bad parent. You love your child anyway. You’ve created new memories, new milestones and new things to look forward too. But that does not mean, that the life you had dreamed and hoped for your child, the one that was ripped away with a diagnosis, or often times no diagnosis and unanswered questions, still doesn’t creep back into your heart and cause grief. I say to you, cry, scream, get mad. Do what you need to do, to get it out of your system. And then go on with your life, loving your beautifully, challenging and unique child who is ALL YOURS.

If you’re reading this and you do not have a child with special needs, then take away one thing. LOVE those who do. Give them someone to lean on, to grieve too, someone who will give them a break, even if it’s for a shower that is longer than five minutes. Bring their family a hot dinner, even if their disabled child cannot eat it, who knows when the last time that mother or father remembered to eat a good meal. And when they seem like they are complaining on social media, they really aren’t. They just want someone to say, and meant it when they say it, “I am sorry this is hard on you and your family. How can I help?” Together, we can all make this world a little bit better for those who are a little more challenged.