To the girls of Sue Mitchell's Girl Scout troop

An open letter to the girls of Sue Mitchell’s Girl Scout troop,                                       Jan 3, 2018

    My heart goes out to each of you as you are dealing with Amber’s death. Having faced death before, I’ve learned a bit about how to live in the life after death. I hope you will let me share.

    First of all, grief is not something you will “get over” or “get through”. Grief is now part of your life’s journey. While she was alive, you were profoundly changed by your relationship with Amber  and now, you are profoundly changed by her death. You cannot go “back to the way it was”, or  “back to normal”. But here is the hope: The pain you feel now will not always be this constant or this sharp. You will find a new normal, a good normal, even, a happy normal.   So how do you do that?

1.  Realize that grief is different than depression, but also realize that you can get “stuck in grief” and with that comes depression.

   Right now, the crying, the loneliness, the ‘sinking into the memories, unable to function kind’ of sadness is typical.  But as time goes by,  you will make a decision, either consciously or unconsciously: Does grief control me, or do I control grief? 

2.  Acknowledge that although grief is a permanent presence in your life, you get to make the rules about what he (grief) can do, and when he can do it. 

3. Beware of the ambushes.  Memories are great, until they come at the wrong time, in the wrong place, and you lose it in the middle of Krogers and strangers wanna call you an ambulance and they don’t understand that your heart is broken, and the ER can’t fix it. 

4. Put your grief in a box.  It’s a bit of embarrassing to have a full blown grief attack at  Krogers, or at work, or in the middle of family Christmas, so what do you do with grief when he wants to run uncontrolled in your life?  You put him in a box.  Not a cardboard box, but a box in your mind. You might think that it would be a good thing to put the lid on tight and never open it because if you do, all the memories and pain and grief will come out. But if you don’t control when that lid comes off, it becomes like a ‘Jack-in-the-box’ and the crank turns and turns and without warning, it pops open and all the contents fly out all over everyone around.

   For a while, keep that box on a low shelf in your mind. Open it a lot.  Open it intentionally, on your terms.  Choose when and how you will grieve. As time goes by, you’ll find that you will open it less and less.  You may feel guilty about that. You might feel like you are forgetting Amber, and that you are dishonoring her memory. But that’s just part of walking your journey.  I remember laying on Emily’s grave about 6 months out.  The guy mowing the cemetery stopped to check on me.  I told him that I felt guilty that I was only coming once a week instead of every day.  He told me “I’ve been watching you.  You’re right on schedule. That’s just the way it is. It means you’re healing up.”  Those words freed me from the obligation to stay stuck in the same spot in my journey.  He freed me from being stuck in grief.  You will always have that box with you, and amazingly, one day when you open that box, you’ll discover that those same memories that cause you so much pain now, have morphed into your prized possession. 

5.  Give your grief a job. Like having a benefit, or writing a note to Adrianna. Like “adopting a kid” in a 3^rd world country, or setting up a scholarship, or volunteering to feed the homeless. Easing someone else’s suffering, somehow, eases yours.  And somehow, it will give meaning to a meaningless death. Amber is like a stone thrown into a pond. Her life rippled into ours.   And her ripples will continue with anything you do to honor of her memory.

6. Be gentle with yourself and with others.  Your grief is proportional to the relationship you had with Amber. Just as your relationship with Amber was different from everyone else’s, so your grief will be different as well.  Don’t put expectations on others to grieve the same as you. And don’t expect yourself to grieve the same way others do.  All that will do is to isolate you from the other people who loved Amber, too.

   That's enough for now.  Keep on walking.  And if you find yourself stuck, call me, text me, friend me.  618-889-0587

  I send you love and hugs,

Anne

CIRCLES

                                                                              

We all live and move within circles.  We have our circle of family.  We have circles of friends and of co-workers.  And we have circles for special interests and special needs.  Our circles are made up of kindred spirits.  We trust the members inside. They are our safety net when we are vulnerable.  But the reality is that our circles are constantly evolving.  People move in and out of our circles depending on the situations in our lives.

When Emily was born, my circle of friends changed. I struggled with the grief that came with having a child with a disability. I had lost my own identity, the mom I used to be before Emily’s birth. I had lost the child I dreamed that Emily would be. I focused on becoming the mom my family needed me to be.  I was abruptly thrown into a circle with other parents who also had children with disabilities. Those people touched our lives with their words and examples. They dispelled my feelings of aloneness. I took support from those in this circle who were there before me and later, I gave support to those who came after me. 

The circles I knew before Emily was born, changed.  Some people slowly drifted out because we no longer shared the same priorities.  And others, I unknowingly pushed away when I put expectations on them. Those expectations put undue pressure on my friends and set me up for self-initiating disappointment. Eventually I learned that just as I get to choose how, and with whom, I walk my journey, they get to choose how, and with whom, they walk their journey. If others choose to continue to walk with me, I am blessed. And if they choose another path, then I am blessed for the time they did walk with me.  

My circles changed again when Emily died.  I desperately did not want to lose the support within the parent’s circle.  As I faced the challenges of finding a new normal, I clung to the familiarity of those relationships. But the focus of raising Emily had necessitated my being in the circle, and when that focus was gone, the need for the circle was gone.  Gradually it became obvious that I no longer belonged there. For the other parents, I, minus Emily, was an all-too-real reminder of the fragility of life. For me, seeing the intact families was a painful reminder of all that I had lost.  It was fully two years after Emily died that I finally sent a note to the Down Syndrome Association of St. Louis and asked them to take me off the mailing list for their monthly newsletter. That notes was the final event that severed my connection from the circle of parents of children with disabilities.

I became part of a different circle – one for parents whose children have died.  Now grief was my daily focus, and it threatened to consume me.  As my journey took me through the swamp of loss, I experienced many “secondary losses” which heaped grief upon grief. I felt like I would drown in it.  I surrounded myself with people who had traveled this road before me.  When I was lost, they gave me direction.   When I was weak, I relied on their strength.  When I was confused, I used their wisdom.  When I despised myself, I soaked in their love.  And in turn, I gave that support to those who came behind me. 

It’s now been nine years since Emily died. Now my question is, “How long do I stay in this circle?” The circle where I expect to be sad every day, where I struggle to allow myself to feel joy, where I feel guilty when I am happy, where I disapprove of myself for wanting to move on, and where I never feel that I have done enough penance for my imagined failings as a mother. I have been tempted to succumb to the black holes of anger, despair, and self-loathing,  but now I am ready to step out of that circle.  I am not looking to forget Emily,  or to forget the people who were so significant in our lives. Her presence was so very significant! It was hard and  it was so wonderfully simple. It was great and it was awful. 

 So, I don’t want your pity and I don’t want your sympathy. I trust God to set my feet on the paths that I should go, and to set the right people in those paths to help me along the way. I trust that He knows all about it, and that He has it all in control. I take comfort that this world is not the end of life.   I now belong to a circle in which my focus is on life instead of on death, a circle in which I celebrate life and embrace both the blessings and cursings that I am given.