Grief is a very real part of the special needs journey, most intensely in the months following a diagnosis or other traumatic event. I'm just under four months post-diagnosis, and I'm in the thick of the grieving process. I've been thinking a lot lately about how to survive special needs grief and how to go through the grieving process in a healthy way.
I've done a lot of grieving in my life. It started with grandparents when I was young, of course, but in high school, the reality of death hit for me earlier than it does for most when a close friend was killed in a car accident. That was the beginning of a long list of peers who passed away in unusual circumstances over the course of about ten years. One friend was diagnosed with leukemia at his annual physical and passed away from complications just a few months later. Another friend was killed resisting a robbery while serving on missions overseas. Yet another friend died at his own hands, surprisingly and heartbreakingly. I've grieved a person's physical death many times, and walked through grief with others many times. Very little surprises me when others share their grief experience with me.
It's always interesting when I am able to not be surprised by the experiences of others, yet can so easily be caught off guard myself. I realized pretty soon after M's diagnosis that I was grieving, but I had definitely forgotten some of the details of how to go through the process in a healthy way. There was a Saturday a couple of months ago where I just felt so inexpressibly angry. Of course everyone around me seemed to be doing everything wrong, but I was able to recognize that it was me that had shifted, not them. It hit me that I needed to give myself some space to process the intense emotions, and that I had forgotten that key piece to grieving.
Grief needs space. The emotions that accompany it are intense and exhausting. I looked up a quick refresher online for the stages of grief, and it helped me to recognize that I am squarely in the Anger phase. I feel this need to shout from the rooftops that this is not the life I signed up for. It's not what I want for my kids, my marriage, or myself. I had no say in this being the course of my future, and I'm angry about it. That anger is strong, and if I don't give it a place to be expressed, it will eat me alive.
With 8-10 therapies per week for M, two other kids, and a part-time job to juggle, my days don't have much space. Weekday evenings right now are usually spent working on whatever I couldn't get done or just decompressing from the day's chaos. The emotions are there, though, always just under the surface. I keep plowing through our days trying to keep everyone afloat, but the emotions inevitably catch up with me. I'm realizing a pattern is emerging: at some point over the weekend, some strong emotions will need space.
For me, allowing my emotions to be expressed has a few different outlets. Physical activity like a run or kickboxing helps me immensely with letting out anger. My husband has even held a couch pillow while I've (carefully) punched. (Might be time to invest in a legit punching bag, eh?) Sometimes I scream into a pillow or pitch a fit on my bed; anything to allow the anger to come out in a safe and healthy way.
Generally, after the anger has had a release valve, what's really underneath all of that is deep and intense sadness. For me, a really good cry is the best way to let that breathe. Sometimes it's by myself, sometimes with my husband or a safe friend, but it has to have space to come out. I'm such an overachiever that I have to verbally give myself permission to have a cry break at times.
Our American culture does a terrible job, generally speaking, of teaching us how to handle intense emotion. Most folks are afraid of it and avoid it at all costs. We were created with these emotions, and I believe they have to have space to be expressed if we are going to navigate this journey called life in a healthy way. It's not a sign of weakness or surrender; expressing emotion takes an incredible amount of wisdom and strength. The wisdom comes in planning ways to express it in safe ways that don't cause harm to others. It also takes a lot of strength to courageously face the reality of your deep emotion.
Grief is exhausting. After that kickboxing session or intense cry, I need a nap or a snack or to go to bed early. With my life as chaotic and full as it is, I have to plan for these things. I have to make sure my weekends have some breathing room for intense emotion and extra rest. There again comes the wisdom in planning our family's schedule and the strength to defend what's important for us in this season. I am not doing these things because I am giving up; I am doing these things precisely because I fully intend to make it through the long haul. Sometimes I need a breather so that, instead of collapsing, I can continue the uphill climb.
Are you in a grieving season? If so, take care to plan extra space in your life for the intense emotions that come with that. If you are a close support person to someone who is grieving a special needs diagnosis or any other kind of loss, remember that they will need to have safe places to process intense emotion. You might be able to be one of those safe friends who can be the container or help them create space in their schedule by watching kids, bringing a meal, or cleaning their house.
Grief eventually becomes toxic when it is avoided. Give it the space and attention it demands.