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

The Perpetual Grief Series

I’m not sharing about the concept of continual and on going grief to gain sympathy or pity. But to bring awareness to a state of being that some may have no concept about. My life is not continually sadness and depression. There are SO MANY AMAZING things…..starting with the 6 most amazing people that I love more than life itself.


But, I am living this life that has been hard and there are aspects of grieving that I never seem to get beyond because certain situations are brought up again and again and again.

Parenting a child (or children) with special needs is an interesting endeavor. There is a certain loss of dreams and ideals that you come up against time and time again.

For many reasons, my 2 older boys – both of which have Autism, ADHD, Learning Disabilites and Anxiety, as well as Sensory Processing Disorder – have never done very well in group activities. Whether its the social aspect, or the inability to focus, the lack of verbal or written output, generalized fear and anxiety; or even the chaos, and sensory input from an organized activity.

We tried to put Jeremy in Karate, and Soccer when he was younger. The karate instructor was positive that he could whip Jeremy into shape…..and eventually asked us to leave when all Jeremy was interested in doing was spinning in circles while laying on the floor. The soccer league was specifically a no rules, just play league and we figured the lack of standing in lines waiting for your turn to do the drills would be amazing for him. We were excited to have him ask to be in net every week, until we realized that the ball almost never made it to the net and that he spent the majority of his time laying in the grass, looking up at the sky and rolling around. We attempted to put Josiah in a parkour class but after getting spoken to by the instructors because he wouldn’t stay in the lines and wait his turn, we removed him from that activity as well.

The only activity that has been somewhat tolerated has been swimming…..and I’m not surprised because my boys spend about 50% of their awake time in the the bath……It’s a sensory heaven…..the perfect temperature, perfect amount of pressure, they can float if they want, still play with lego, and can hide under the water and its so quiet.

Even so, we got notified by the swimming instructor, last week, that maybe Siah would benefit from private lessons as he struggles with listening to the teacher and following the rules. And I grieve….

I see parents all around me putting their kids in different activities and I grieve the loss of normality. I see parents sharing excitedly of how their child is excelling in this activity or that activity. Hear parents talk about how their child got a scholarship to this college or university and while I’m so happy for them and would never begrudge their child’s success…..

I grieve. I grieve because I celebrate differently.

I celebrate days when we have “only 3” meltdowns. I celebrate just getting my children to school……without tears is a banner day. I still haven’t been able to celebrate just dropping off my kindergarten-er and having him run inside happily. I celebrate days where the teacher hasn’t had to talk to me about an issue. I celebrate days where bedtime doesn’t take 3 hours from start to finish. I celebrate my children eating……something……anything……I celebrate when my child uses the bathroom without fear, tears and pain. I celebrate when we can find the “softy pants”.

But I grieve the loss of dreams…..the dream of normalcy…the thoughts and ideals I had of life looking a certain way. Of being able to put my son in soccer. Of having my kids involved in sports or an activity…..of having them excel at something.

And they do excel……just differently.

In the grand scheme of things, I’m raising my children to be kind, compassionate, understanding, aware…… and I think I’m succeeding. But that doesn’t mean that somewhere underneath it all, that a part of me doesn’t feel the loss…..

And I grieve……

The Perpetual Grief SeriesĀ 

We’ve had a lot of hard moments, recently! 

This past Sunday, neither of my little boys wanted to go to their class at church.  I know that once they are settled, they enjoy themselves; but transitioning from being with mom and dad to being in their class has been so difficult.  Sunday was no exception.  We managed to get Judah settled – but he wasn’t happy about it.  And Jon took Siah up to his class.  He sent me the picture up above, saying that Siah was pretty pissed to be there and was refusing to join in.  He was just standing in the corner, glowering at everyone.  

He finally worked his way through whatever transitioning he needed to do and realized that he could “improve on” what they were doing for the craft. At that point, he quite happily joined in.

When I spoke with him later,  he mentioned that getting  a”list of what was going to happen” would help…………and that explained everything.  He was feeling anxious and out of control.  His need for security and comfort displayed itself as defiance and opposition.  But the reality was that he was scared and insecure.

I suggested that maybe the calm Josiah needed to write the nervous Josiah a letter so when he had forgotten how fun class was; I could give him the letter so that he could remind himself…….because even if you won’t trust me, you’ve got to trust yourself, right?

He giggled for a long time about that.  

But it breaks my heart to see him stressed beyond the ability to reason.  He is such a smart, capable child as long as he’s not in “fight or flight mode”.  Once he hits that…..basically we hold the course until he can come to a realization by himself.
And yet, the longer he stays in that space, the harder it is on him –  physically, mentally and emotionally – and I hate that.  

I grieve the loss of normalcy.  I grieve the loss of ease.  I was looking back at pictures from when I had only the older three kids and while life back then wasn’t easy….it was different.  It seemed simpler.  It wasn’t easy.  Jeremy wasn’t an easy kid but he as only 1 of 3 and at that point I had no idea of the world of pain I was headed into.
I grieve the loss of self.  I grieve the loss of competence and confident capability.  I grieve the loss of innocence.

I feel like a part of me is stuck in that dark space of grieving.  Like it’s been so long that grief has been touching me that it’s infused itself into me.  Not overwhelming, just subtly changing……..winding tiny bursts of sadness here and there. Not enough to overwhelm, but just enough to never forget………