Medically Fragile, Mental Health, Mom, Mom life, Parenting, Rare Disease, Sensory Processing Disorder, Special needs parenting

Mothers of Children with Special Needs aren’t Always Strong

Mothers of children with special needs are praised for their strength, perseverance, and determination in raising their children. While it’s great being reminded that you are a good parent, there is something inherently uncomfortable when you are told you are strong for raising your child that has special needs. When people share these sentiments, I know they mean no harm. If anyone reading has said this to a parent raising a child with special needs, I understand it all comes from a good place. However, deep within me, there is an unsettled feeling that while the world around me sees that I am a fearless, caped supermom, I know that on the inside I am insecure, scared, and many times overwhelmed by the road I am on.

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When I am told I am strong, there is a part of me that wants to scream at the top of my lungs how weak I feel. I often sit there and nod my head, and I take the compliment, and I know most parents in my situation likely feel that their strength is not an option. When you have a child that is medically fragile, autistic, developmentally delayed, or intellectually disabled, the only person that can advocate and fight for the child is the parent. 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, and thus the only choice they have is to put on their big kid pants and move forward.

For me, the most difficult part of being told that I am strong is that I feel like it means I’m not allowed to be weak or have moments where I don’t feel confident or happy. There are days that it feels like I have to put on a brave face, but in reality, all I want to do is hide in my closet and cry on the floor. I never feel like I can be scared, frustrated, overwhelmed, or sad because I have to be strong for my child. Over the past few months, it has occurred to me that I don’t have to be strong all the time. Today I am giving all moms in this community permission to have a bad day, to cry, to scream and to feel hopeless. We cannot always hold it all together, and if we don’t stop to feel our emotions, we will only find ways to destroy ourselves.

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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 absolutely cannot give up hope that our children can defy the odds, but we also should not diminish the over powering 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 a child, and eventually, as the child becomes an adult they leave home. When your reality is that your child may be homebound or in a group home for their lives, it is hard not to feel sadness and grief. I talk with other parents in this situation, and the number one fear that comes up is not knowing who will care for their child after they die. Long term care of my son is the one thing that keeps me up at night, and it is hard for me to plan a future for him without me here. I worry about who will give his medications, help him eat, and make sure he is loved and cared for with the level of compassion I would give him. I feel guilty feeling sad about this aspect of our lives. I don’t feel like I should feel sad about the future of my child, but I realize now that our reality is not the norm in society. 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.

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If your child is chronically sick, there may be the uncertainty that your child will even make it to adulthood. What keeps me up at night is the thought that I could bury my child. No parent is supposed to outlive their child, and yet there is a population of parents that do this every day, and there is a growing population of parents that will one day bury their children. For most parents, it is their biggest fear, and for many parents, in the medically fragile community, it is a fear they cannot escape. We know that our children are facing odds that are not in their favor. We watch our kids live with medical equipment daily that most people only use at the end of their lives. The lump in your throat can grow tighter and larger when you hear other parents talk about their plans for their children. 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, and 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, and it is natural to feel weak, to feel sad, and to grieve the life you are living. The next time someone tells you how strong you are and how much they admire your ability to do it all for your child, I challenge you to be vulnerable and to be messy with the people in your life. Tell them you don’t always feel strong, there are days that you feel like it’s impossible to deal with any more stress, and that you just need someone to let you not be strong for a minute. When I have forced myself to get honest with my friends and family, I have found that this is where I find my real strength. I find them rallying around my family and me, and I feel their support as they listen to all my frustrations and sadness. We can’t always keep it all in, and 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.

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6 thoughts on “Mothers of Children with Special Needs aren’t Always Strong

  1. Important message, it was good to read this today. We have recently received difficult medical news about my daughter (she is medically complex so adding onto a long list) and after a period of relative calm this has really knocked me sideways. It’s good to be reminded how we, as parents, can and should show our vulnerability too. Thanks for reminding me.

    1. Thank you for your comment! I am so sorry you got tough news. It is always SO hard when you find out something new. I find it hard to breathe in those situations. We hope you can find some time to grieve, feel sadness and find someone to confide in. You can always pop over to our Facebook page and pop me up if you need to chat! Hang in there, momma!

  2. This brought me to tears. Thank you. Thank you. Thank you. My son won’t live into adulthood. There’s a glimmer of hope but he is to sick, and it’s a overwhelming crushing feeling knowing this and being told I’m strong doesn’t help. I just want a break from my mind some days. This wonderful 💫❤

    1. Oh honey – I’m sorry and I get this so much! So please know I get you – I am you, and I’m saying be sad! Don’t be strong for a minute. It is ok!

  3. Thanks.. I’m a grandmother to a terminally ill child .. and this helps me “hear” what my daughter/son in law don’t say..I suppose feel it myself as well. Grateful for your message.

  4. I am also a grandmother of a granddaughter who was diagnosed with a rare disease with no know cure. I cry for both my daughter and granddaughter and try to give my daughter her on space to cry but only for a short time. I cherish the times I have with them both and honor the special time they want to spend together alone.
    I too, have come to realize that the only things that matters are the fun they share and hope I could be part of that. It is true, people, really have no idea how you really feel UNLESS you tell them and you can only tell those who you can trust to understand and be there to listen, so you can let it out safely. Than help you get back up. Mothers and grandmothers hurt, maybe not the same. It I guarantee you this one does. Love is all I can give and that matters.

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