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. Abby was definitely a picky eater, I got that part right. We almost lost her several times. She is almost in the second grade, I still change her diapers. 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?
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.
How annoying that he is always trying to talk to her during her most difficult class. Am I at Risk? I mapped it all out in my head, I knew in my heart she was a girl. Sophomore year she is engaged, we are wedding planning. She looks down and sees that I am not feeling well. I look out the window, trying not to cry.
She has had seizures that have altered her moods and made her violent. 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. 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. My heart sinks, fear sets in How did this happen?
How did I get too old to help you? You see, parenting a severely handicapped child is a lifelong challenge and battle. 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 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.
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. 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. I say to you, cry, scream, get mad. Do what you need to do, to get it out of your system. LOVE those who do. 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.
How can I help? This post was written by one of our guest contributors. Please contact us if you would like to tell your story or share a resource with the WonderBaby. I Lost My Daughter. Nov 12, Guest Post.
Conversely, I remembered the times when my mother showed unconditional patience with me, whether it was finding a messy accident in my crib as a baby or talking back to her as an adolescent. Weeks before she passed, I called my mother from work and broke down crying, apologizing for all the times I had hurt her. Suddenly, all of the memories of my mother during the holiday season tugged hard at my heartstrings: Despite my plea, though, my mother had none of my apology as I, as far as she was concerned, had nothing to be sorry for, adding that I never did anything to hurt her; i irritate her, yes, but hurt her, no.
While there was definitely a fair deal of heartbreak that came with some stories, it paled in comparison to the amount of inspiration I felt from each of the women who shared their respective journeys. My mother was one of those women and while she ultimately lost her battle, she did not leave this world without letting everyone know the type of fighter she really was. Teachers I had as a young child, old friends of any of her three sons, and even old neighbors from different cities, so many people came out to pay tribute to a woman whose impact was no less resonant during this time than it had been years, and even decades, earlier.
In the same breath, though, the legacy my mother left as a caring, selfless woman had touched the lives of so many at the reunion that a celebration of life was far more than a cliche. With that said, I continue to be selfish. I continue to wish my mother could have stayed with us for a few more years. I wish my mother could have won her battle with ovarian cancer and that we could have dined out to a few more breakfasts together, seen a few more movies together, taken a few more drives together, and had a few more talks together.
But, I also know that when my mother passed, she was free of the pain, free of the suffering and that she reunited with, among others, her father, who I know she loved dearly. There are more days where I remember her with a smile, where I reflect on memories of all the happy years, recalling everything she did for my brothers and I, for my father and for just about everyone in general.
I can still hear the way my mother spoke, including when she countlessly insisted that my brother loved apple pie even though he always detested it, whether it was asking how my day was or calling out my name for dinner; I can picture the many letters she wrote to me at summer camp, telling me not to worry about a thing and that she loved me. Clear as a bell, I can still visualize her walk, her stance, the sound of her slippers when she walked into the kitchen on weekend mornings when my dad made us all breakfast. I even remember my little white dog waking her on those weekend mornings licking her sleepy face with his tail wagging in vigorous excitement.
Ovarian cancer may have taken my mother before her time, but my wish is that a cure can be found so that another child can enjoy more time with their mother, to create as many lasting memories or more, as I did with my mother. This can and will be achieved.