The Perpetual Grief Series

Imagine, if you would, a sunshine filled garden exploding with a riot of colors, sounds and smells. The colors are vibrant and exciting as they effortlessly clash and blend together. The perfume from the flowers and the wonderful earthy smell of the warm dirt and the grass fills your senses. You can hear the wind blowing and the birds chirping…’s an incredible experience. You feel calm and peaceful just thinking about that place……..


Now imagine that you are in that place…….but you have glasses on with grey, smudgy lenses; that you are wearing a backpack with 25 pounds of rocks inside that are weighing you down, giving you a headache and making your shoulders feel so tense and sore. Imagine that you have on heavy boots that make every step you take an extra effort; and you’re exhausted because you must. keep. moving. or something won’t get done. Imagine that you have on headphones and a crowd of people are shouting different instructions at you; and you feel that you must follow all the directions and manage to get everything done that they are requesting or demanding. Imagine that you are juggling but what you are juggling is fragile and if you somehow drop one, there are huge consequences………now imagine that this is every day 24/7 for as long as you can remember and as long as you can see…..You can sort of, almost remember what life was like before the exhaustion and the weight of the stress; but because your “now” is so overwhelming……”before” has become this idealized place that you no longer have clear access to and at times, you can feel very resentful of where you are at, right now.

I know that life is not that amazing sunshine filled, calm, peaceful place, all the time. But my life with special needs kids, 99.9% of the time, feels like the second part of that imaginary place……and it’s exhausting!

It’s exhausting, thinking about it. It’s exhausting, living it.

And with that exhaustion comes guilt, and more grieving.

I have special needs children and sometimes it feels like those children and their “special needs” are my whole world. But they’re not……

I have myself. I, way too often, put myself last and really have nothing to give but everything is required and I give – at a deficit to myself. I end up wondering what the long term effects, physically, mentally and emotionally, will be. It’s only a fleeting wonder, as I don’t have “time” to dwell on it.

I have a husband. He, way too often, gets the short end of the stick because he is an adult and capable of caring for himself. But with all that is required of me, there is very little to give to him, and I often grieve the friendship and intimacy that we could have, should have……..did have and I took for granted? We have a weekly date night (thanks to respite) but often we sit side by side, shell shocked over this life we are living. We attempt to connect, knowing that it won’t be this way forever; but he is my best friend and even though we are married, see each other every day, live together, sleep together….I miss him. And yet, right now, so much else, consumes our time and thoughts and energy.

I have 2 big girls who are becoming incredible women. I grieve the lack of time and energy to spend with them. I am so thrilled that they want to spend spend time with me. But I feel guilty when my initial thought is that I don’t want to spend time with them because I have nothing more to give. And I grieve……I grieve being the mother they need and want. I do my best, but too often, I’m scared that my best is not enough.

I have a 5 year old. And against all the odds, he seems to be neuro-typical……what some might call normal. I’m not sure what normal really is or even if you can actually say that anyone is normal, but he doesn’t have Autism or ADHD and he doesn’t seem to have any glaring learning disabilities, that we are aware of. He struggles a little with some anxiety and has a harder time with transitions (than I’d like). But, he really seems to fit in with what society would consider to be a typical 5 year old. It’s wonderful and bizarre to see him reaching milestones, remembering names, being able to read and identify emotions in himself and in others, being able to sit still and focus….. He could be my little soccer player or join a karate club…….but remember that description above…..I’m exhausted. And feel like I have nothing left to give. And I grieve…..

I desire friendships and relationships, but there is no extra to give. Everything comes at a cost. Sometimes the investment is worth it, sometimes its not….and it’s a huge juggling act to know when, where, why, and how to fit it all in. As a result, unless it’s someone who understands what I’m going through and is willing to be there when I can muster up the energy……friendships are sparse, fleeting and oh so shallow. But if and when you do find those people who get it…….it’s incredible. But then you grieve your inability to have as much time as you’d like. Sometimes, its easier to not know what you’re missing…..

So much of “special needs” parenting has this underlying thread of guilt and sadness woven through it. I might try to fit or blend in. I might try to “do it all”…..but I just can’t. There is simply too much.

And I grieve…..

I don’t think that Perpetual Grief is limited to special needs parenting, it can be brought on by any form of long term trauma like physical or mental illness, divorce, loss, etc……

Once again, my goal in sharing about this, is not because I’m trying to explain how hard my life is or that I’m looking for pity. I know there are others out there who feel this way and I want to let you know that you’re not alone. The journey of Perpetual Grief is not an easy one, but knowing that you’re not alone seems to help. It won’t make it all better, but it helps a little.

I also know that there are those who don’t understand. They don’t understand why I don’t do extra things. Why I always say, “no.” Why I have to weigh and measure how worth it, it’s going to be to do something that seems like it would be fun and exciting. I know that there are those who don’t understand why we won’t alter our schedule to do some fun activity because the “schedule” keeps things balanced and I’m too tired to try to allow for things to become unbalanced. There are those who don’t understand why I’m too tired, when I don’t do anything extra. Grief is a funny thing. You’re not always sad but it’s like a weight that sits heavy on you……and when it’s always around….you’re always tired.

Be kind. Be compassionate. Don’t judge.

Read Part 2 of The Perpetual Grief Series here

Read Part 1 of The Perpetual Grief Series here

Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys.

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