Mothers of children with special needs are praised for their strength, perseverance, and determination in raising their children. Hearing you are a good parent feels wonder. However, there is something inherently uncomfortable hearing you are strong for raising a child with special needs. Many days I am anything but strong. Most days I am barely hanging on to my sanity by a thread.
When people share these sentiments, I know they mean no harm. However, deep within me, there is an unsettled feeling about the way the world views me.
People believe I’m fearless and super-human in my ability to manage my son’s care. However, I never feel superhuman, but instead, I feel overwhelmed, scared, and insecure.
When I hear that I am strong for managing my son’s care, I never know how to respond. I often sit there and nod my head and accept the compliment. If I want my son to survive, I don’t have any other option but to fight for him.
When you have a child with disabilities, you are the sole voice and advocate for your child. There are only two choices you have – you either take on the fight, or you abandon your child.
Most parents could never consider leaving their child. Thus the only choice they have is to put on their big kid pants and move forward.
For me, the most challenging part of being told that I am strong is that I never feel like I’m allowed to breakdown and cry. So many times I’ve been forced to be strong for my son.
I’ve sat with him through life-support, brain surgery, open heart surgery, and multiple near-death experiences. During those times, I’ve wanted to breakdown. However, I generally have to be brave for my son so that he won’t fall apart.
As a result, I never feel like I can be scared, frustrated, overwhelmed, or sad. Sometimes holding my composure makes me feel like a boiling teapot about to explode.
Over the past few months, it has occurred to me that I don’t have to be strong all the time. Over the years, I’ve realized that if I don’t let myself cry and breakdown, I explode in anger.
Now I permit myself to have ugly face cry sessions. Feeling my emotions and releasing my sadness gives me the strength to continue moving forward.
No mother needs to keep their cool and be strong all the time. If you are raising a child with disabilities, please know there is no shame in allowing yourself to feel scared, weak, and afraid.
The truth for many of us is our children may not grow up and become independent. If that is a reality that is staring you in the face, it is ok to grieve and have sadness for your child.
We cannot give up hope that our children can defy the odds. However, we also should not diminish the intense feelings that come with the reality that our children may never leave our homes.
The natural progression in parenting is you have a child, raise them, and they grow to become adults and leave. When you learn your child may need assistance and support for life, overwhelming grief may consume you. Allow yourself the time to sort through those emotions.
For many of us, including me, my biggest fear is who will care for my son when I die. Long term care of my son is the one thing that keeps me up at night. My biggest fear is once I die no one will love or understand him the way I do. How can another caregiver ever fill my shoes?
I worry about who will give his medications, help him eat, and make sure he is loved. Then I feel guilty for feeling sorry for my son’s future.
My son deserves to have a mother that doesn’t grieve his future. His future might be different than many people, but that doesn’t mean his future doesn’t have possibilities.
As my son grows up, I never want him to think he was a burden to our family. Of course, our lives changed with his birth and health issues, but he was never a burden. He’s my son and no matter his abilities his care has never been a burden for me.
Because of this complexity, I feel massive guilt when I cry or feel sadness for the obstacle he faces. As his mother, all I want is for him to be loved, happy, and have a bright future. I hate that he deals with so many medical issues that keep him home, away from friends, and continuously at the hospital.
Then one day I realized that grieving and sadness are a natural part of parenting. Feeling sadness doesn’t mean that I don’t love my son. My grief is a natural reaction to my empathy for the difficult life my son leads.
Our dreams and hopes are different, and as we all navigate this journey if it makes you feel overwhelmed and sad, it’s ok. Never apologize for your negative thoughts or any of the grief you feel.If your child is chronically sick like my son, our children may not survive to adulthood. Some nights I find myself paralyzed in fear about burying my son. Parents are not supposed to deal with the death of a child. Yet, parents lose children to illness every day. Additionally, each day a child is born that will not survive their childhood.
For most parents raising a medically fragile child, the fear of their child dying is one they can never escape. We know that our children are facing odds that are not in their favor. We watch our kids use medical equipment designed for end of life care.
When parents of healthy children talk about the future, lumps can form in your throat. You know you can’t plan for tomorrow because you are fighting to get through today.
If you are feeling uncertain, scared, or terrified of your uncertain future – it’s ok not to be strong. It is ok to be sad, feel weak and to cry about the unfair circumstances your child faces.
The world sees us as superheroes for our children. I imagine they believe we are cloaked in our capes as we run to various appointments.
The truth is that no single person is capable of being a superhero all the time. Sometimes we need to break down and allow ourselves to feel weak, sad, and to grieve.
My challenge to all of you is, to be honest with people about your journey and emotions. When someone comments on your strength, don’t be afraid to share the messy parts of your life. Find a friend where you can break down.
Don’t be afraid to have an ugly faced cry session. Most people want to help you, and allowing them to experience those emotions with you enables a stronger relationship.
Tell them you don’t always feel strong.
Let them know that there are days that you feel like it’s impossible to deal with any more stress.
Explain to them that being forced to be strong all the time is exhausting.
For me, my strength has always come after being honest with my loved ones. When I know others understand I’m not an impenetrable force, they are more willing to help my son and me.
After being vulnerable, my friends and family have rallied around us. I feel their support as they listen to all my frustrations and sadness.
We can’t always control our feelings. I encourage you not to be strong every single day.
Your sanity depends on your ability to process these feelings.
Once you have had a chance to feel weak, it is only then you will know the truth of how to be strong.
*Katie Joy is a blogger and freelance writer. Her work is featured on Upworthy, Huffington Post, Yahoo Parents, Mamamia, Daily Beast, Cafe Stir, Newsweek, Jezebel, and The Daily Mail. She writes articles on parenting, disability advocacy, debunking pseudoscience, atheism, and crimes against women and children.