A couple of my LDS friends came by today to drop off the Mother’s Day gifts I missed at Church. Pretty brave, really. It really feels like my ward has this great knack of stopping by when I’m at my most volatile state. Had they come by two weeks ago, we would have had the brief polite conversation they had planned on. But they didn’t. They came today. The one day of the week that isn’t plagued with appointments, on the week following Fred deciding he wants to be homeless. In the aftermath of Mother’s Day and a tough therapy session and a sleepless week guarding the door and worrying and searching for supports…anyone who may be able to help. They are very good at showing up when we need them the most and leaving us with less than we had if the first place.
They say they love us, and I believe them. But they no more understand our position from the trenches than we understand their position from out of the trenches. What do people in war do when they are not in the trenches anyway? I’m vaguely aware that there are other aspects to running a war other than hand-to-hand combat or being stuck in the trenches, or being a prisoner in a concentration camp, but it’s difficult to visualize even during the quiet moments when I sit in fear holding a tourniquet while waiting for the medics who seem no where to be found, wondering when the next wave will come in. It’s difficult to imagine that there are people who don’t worry about all this, about survival. It is difficult to imagine why they send us gift packages with doilies when we need medical supplies. It is difficult to understand why they tell us we are letting the enemy win when we are here in the fight every hour, every minute. It is painful to hear that we must forget the wounded and move forward when the wounded are still begging us to remain, to help them, even if it is simply holding their hands while they die. It is difficult to remember why we are fighting in the first place, and who are we fighting anyway? Reality changes in the front lines.
I’ve been accused of being melodramatic in my descriptions of our struggle, abandonment and pain. But drama isn’t my intent. And my feelings are real. I’m looking for validation. I just want someone to know. I’m here. I’m still fighting. I didn’t choose to be here, my commanding officers sent me here. I’m hurt. I’m hungry. I’m tired. But I’m still here, and my feelings and pain matter. If you can’t help me, and it’s very likely that you can’t, would you please tell me, “good work, for a pacifist, you are fighting a good fight, you have amazing courage, I’m so sorry for your pain, I’m so sorry for your loss, I am on your side.”
And that brings me to the subject of my post. What do I need? What can others do? How can anyone help?
One of the most enlightening therapy assignments I was given was to make a separate list of my needs and wants. It was far more difficult than I expected! It made me realize that I have never allowed myself to vocalize my needs and wants. Somehow, I came to the conclusion that my entire value came from what I could do for others. It is a myth that is easily perpetuated by those in the denial. And it isn’t true. We are just as valuable as those we serve or don’t serve. Human beings have value, and there is absolutely no shame in caring and attending to our own needs and wants. We all do it. But some of us are ashamed of it and try to overcome it. Which to me, seems silly. If someone isn’t meeting my needs, what is so shamefully about having me take care of those needs myself? But I digress. Back to my assignment. it was so difficult, that I had to have a friend help me. But it opened up an entire world for me. For, once in my life, I understood clearly what my needs were, and how they differed from my wants. I was surprised at the list. Maybe someday I’ll share it. The list helped me in being able to identify my family’s needs.
My extended family wanted my therapist to tell them how they could help, but there is really no need to waste her time. I’m perfectly capable of telling people how they can help, and I have done so repeatedly. So! Here we go… again.
- Love, and prayer, acceptance
- forgiveness (due to our distress, our pain and anger can easily spill over onto innocent bystanders, it is one of the reasons we try to keep to ourselves)
- space and time to heal and feel, it will take as long as it takes
- networking for job a opportunities for Boe every lead helps (My duties with the kids, and mental health condition prevent me from working right now)
- the occasional low cost fun distraction
- appropriate and well supervised respite care for the children (our children need much closer supervision than most kids their age, the younger ones can’t be left alone with other children),
- help finishing the garage
- help getting the house ready for sale
- help sorting through albums and and accumulated stuff (the memories many of these hold is painful) This has to be done while the children are otherwise occupied
- help filling out and sorting through paperwork for government programs and supports. Again this needs to be done while the children are otherwise occupied
- providing rides (church, school, activities)
- providing opportunities to contribute in small ways outside our family
- All the children need pocket money and would enjoy having small responsibilities or jobs in order to earn some money.
- cards, emails, texts, facebook interaction, photos, showing interest and support for the children, while they may not always respond these mean a lot to them. Since the kids need such close supervision, phone calls aren’t always a possibility since they distract us from attending to the children.
- Educate yourselves and others on issues that daily effect our family: the effects of trauma; symptoms, prevention and long-term effects of child sexual abuse; Post Traumatic Stress Disorder; Autism spectrum disorders (all our children have symptoms in this spectrum); Cavernous Malformation/Angioma; traumatic and acquired brain injuries; Compassion Fatigue Syndrome; the grieving process; forgiveness and healing process; addiction and recovery. I will try to provide reliable links and resources on my blog: myvictimimpactstatement.com and gleaningthefields.com I have a particular need to just be heard. Having people read or comment on my blogs helps me feel that their words are not empty, that they care enough to take the time to at least try to understand my point of view.
- Try not to judge us as either saints or villains, we are neither. Don’t assume you know how we feel because you don’t. Avoid comments to us that start with: You should , you could, you need, why didn’t/don’t you, I would have, you need, why aren’t, why can’t, if only, if you just. Don’t minimize our pain and disabilities. Don’t question the validity of what medical and mental health professionals advise us–we have chosen them carefully. Don’t tell us to snap out of this, or will ourselves out of it, trust me, if we could have, we would have! Don’t tell us that if we do this or that it will make everything better. Don’t make empty promises just to console us for the moment. Don’t tell us one sided stories of those who have endured worse and coped better, we are doing the best we know how. Please, please, please, never tell us we must have pre-mortally, or subconsciously chosen these trials, or that God gave us these trials!! God isn’t cruel, people are cruel. We would never have and didn’t (consciously or not, directly or indirectly) choose to subject our innocent children to such cruelty no matter what sort of good has or may come out of it.
- I have many unsold paintings and prints at a wide variety of prices. Finding buyers for these helps us financially without using up too much of our time, preserving our dignity.
- Any activity or event within a large group (as in more than two people outside our immediate family) is overwhelming–our senses are raw and on high alert, this will take time and relative security to resolve.
- Last, please don’t expect us to always call you when we need help. Unfortunately, we have called on a number of occasions, and it seems standard procedure is simply to be told no, or even worse, promised the help and have it not be followed through. We understand no one is perfect, things come up. But it is difficult to admit we need help, that we are not self sufficient, that we are not contributing our fair share. And sometimes, many times, we are simply too busy taking care of emergencies to take the time to inform everyone. Again, check my blog. Haven’t seen a post in over a week? It’s very likely we are drowning….or dead. Blogging is much of my therapy right now, if I don’t have time for therapy, I’m in over my head…again.