Pains

This article is so applicable to what I feel that I thought it worth posting here.  


Phantom Pains
by Carol Mudra
(from Prodigy Medical Support Bulletin Board/Death of a Child)

This A.M. when I was in that half-awake, half-asleep state, I was thinking about what it is like to have your child die. So many people that haven't lost a child cannot possibly understand. I thought of losing a child as being compared to losing one of your extremities. If you had your arm suddenly amputated you would go into extreme shock. There would be sooo much pain for a long, long time. As that assaulting, excruciating pain eases, you learn to "get back into life," step by step, but it's a long process of rehabilitating yourself to learn to live without your arm. You start to "get better" and then the phantom pains come and try to haunt you.

Unexpectedly, without warning, there you are again in pain, except now people don't understand your pain as well as they once did. So you feel guilty for feeling this phantom pain. There are some friends out there who are more wise and do understand about the phantom pains and will still love and be there with you. Other will not.

Your hand itches but you can't scratch. It's not there. The longing to hold your child is there, it's real, but you can't hold your child again while we are still here. We, as parents who have had a child die, have had part of us amputated. They were born out of us, bone of our bone, flesh of our flesh, carried in our wombs, nurtured at our breasts. And even those who have been adopted into our lives are knitted into our very souls. So, how can the death of a child even be related to the death of a father, mother, sister, brother, spouse or friend? These are all great losses but having our child died is having part of us taken away. The grief different; it's not "normal," we are supposed to die before our children.

Then, I thought about the amputated arm. If that wound isn't cleansed and lovingly taken care of, it will become infected. Bitterness and anger (which are normal in grief) can lead to an infection in your soul if you get stuck in it and it is not dealt with. Friends can be loving healers helping to bind up the wound or they can rip open the wound, making it deeper, by insensitive remarks due to a lack of understanding.

We are all at different stages in our journey though this loss and hopefully our healing. But there will always be a part of us that is gone until we are in heaven with them. We will get the phantom pains but we can make a choice each day to go through the pain until we find some hope for our weary souls.

We will never be the same but we can survive and maybe we will even turn out to be a better people, more in tune with others, become "wounded healers". We are already more gifted than a lot of other people in this world because we KNOW what it is to truly love our child. There are a lot of people out there who take their children for granted, just as a lot of us have taken for granted that it is normal to have two arms and two legs.

But what if that were different.....?

Dread

I don't sleep. From the moment Colby was born I was afraid he'd stop breathing so I'd stay up all night watching him breathe. Then when he developed asthma, he did turn blue several times. There were several ambulance rides, days and days in the hospital. Those years got me in the habit of not sleeping.

Now I stay busy during the day. Go, go, work, work. I stop several times throughout the day to think, reflect, but the pain, the anguish, is too great so I get busy again. By nightfall I am exhausted. I lie in bed and the anxiety returns and I find an excuse to get up, then another, and another. Before I know it, it is morning and I have dozed for less than an hour.

This happens most nights. I go through my days in a daze. Several times I leave the house and forget to turn the water in the sink off. Only one minor flood so far. Over the counter sleep aids make it worse. I shake, I am revved up, and sleep for the next several nights is impossible.

I try relaxation techniques, routines, zen tea, deep breathing, but the thoughts in my head rush in, overpower everything and I am up again, holding my arms around myself and pacing through the house.

In the mirror I do not look like me. A stranger's face stares back through the glass. Dark circles, baggy eyes. Old. Exhausted. Tonight will be different, I think. Tonight I will sleep. I think that every night and some nights, for a few minutes, I even believe myself. I have come to dread the night.

Ornaments

I pull the empty Christmas boxes out of the garage and up the steps to the living room where I deposit them on the living room floor. Then I turn and survey my mom's Christmas tree. It is an artificial tree, a little taller than 6 feet, and it is loaded with ornaments, some of which date back to the 1950s. Each ornament has a story, a history, a place in our family.

I begin to pull ornaments off the tree. one by one, wrap them and place them in a box. Here's the tiny plastic horse jumping over a fence that a friend's mother gave me the Christmas I was eight. Here are the little metal raspberries that our local gas station used to give away during the holidays. Each one is a different color and I remember how excited I was when we got enough gas for me to go inside the station and choose a new one. Here's the angel I got in Hawaii, the beautiful ornaments with loops of hanging pearls that our neighbor made 50 years ago, and the painted birds that look so realistic that every cat we've had has tried to "catch" one.

I make selective picks from the tree, delaying the time when I have to take the loops of colored paper that Colby made when he was three. My hands shake as I touch the paper and tears roll down my face. as I lovingly wrap the paper in tissue and place it in the box. Next is the reindeer head made from Popsicle sticks. Colby made a dozen or more that year, the year he was eight, and gave them to everyone he knew. Then there are the pine cones Colby painted when he was 14, the lovely star ornament he gave my mom when he was 20, and the Snoopy ornament he gave me last year. By this time I have to sit down, the tears are falling so fast I cannot see.

The last ornament is the spire at the top of the tree. This was always Colby's job, to take the spire off and it was one of the last things we'd do before we left Minnesota to head back to Nashville. Mom always had the tree up and decorated by the time we arrived, but we always took it down. Even when he was small, two, three, four years old, I'd lift him up to the top of the tree and he'd carefully pluck the ornament and reverently hand it to me.

I reach for the spire. It's the second spire we've had in my lifetime. This one must be about 30 years old. I am all cried out by this time. The spire is wrapped and packed and I carry five boxes of ornaments back to the garage. I don't know if I can do this again. Next year. Next year, if the tree goes up at all, it may be better to hire someone to take it down, for there are too many memories, too many painful remembrances of the one person who should be here . . . and is not.

Lists

I wrote a while ago about the new normal grieving parents must live on a daily basis. This new normal is what our day-to-day life is like after the passing of our child. Children. Some parents have lost several. I can’t imagine. I have a friend in the mental health industry who says it is important to see in black and white what normal now is. That way we can embrace it. Better the enemy you know than the one you don’t. From what I can tell, my new normal is similar to that of other grieving parents. All of our children would be so sad to realize how much we miss them, how much their passing has affected us, how tough we now find life. This, when they are at peace, happy. But, this is it. This is our new reality. Since Colby passed, I:

can’t remember anything
don’t sleep, am endlessly tired
do not take anything for granted
am on an emotional roller coaster
take forever to get things done
wander aimlessly
am no longer afraid to die
want, need, to be alone
am endlessly grateful for small favors
cry easily and regularly
have an incessant need for facts and plans
become angry at thoughtless comments
can’t tolerate crowds
realize that life does go on, even though at times I don’t want it to
understand all too well that life is very short
wonder how many tears my body can produce, how much pain I can endure
desperately wish I could have my life back, rather than this nightmare I now live

Normally I am a glass half full person. Lately that has been hard. The list, though is helpful. My friend is right. I do see the reality, but I also see a path through a small piece of it. I see I need to take better care of myself, write things down so I don’t forget, stay away from large groups, do things now rather than put things off, appreciate everyone. That alone is a lot for me to remember, to attempt. But I will try. I have to. You can see the alternative. It is right here in black and white.

Challenges

Today I get through the day with a little help from my friends. Some days are like that. Impossible to deal with on my own. Today held many meltdowns. Many challenges. But each time someone stepped in to help in one way or another. Thank you. You know who you are.

We often forget that the littlest thing can mean the world to someone else. A smile, a prayer, a helping hand. Colby understood that. So do many of his friends. But at times we all forget. When we are having a good day we sometimes forget that an encouraging word can mean the world to someone who is having a bad day.

When Colby was younger we sometimes had a contest: how many nice things could we do for the other in a minute or less. Colby always won. I'm not sure when we got out of the habit of doing that. Life happens, and we forget.

I've had a lot of bad days lately, but I have found the best way to get through it is to help someone else through their day. That is not always possible. Some days, like today, are beyond that. But I won't forget. For reaching out, helping others, is the best way for me to help myself.

Colors

Early in my counseling I am asked the color of my grief. I immediately say both yellow and purple. These are the colors that first came to mind, but not bright yellow or a bright purple, more a deep yellow-gold and a dark purple, what some would call a dark shade of eggplant. I realize these are unusual colors so I think about it for a week, only to confirm my initial reaction.

Lately, I give the colors more thought. I conclude the dark purple comes from the Easter services and my Catholic upbringing. Death and rebirth. Lots of symbolism there. I haven't had time to figure it all out yet. The yellow gold to me represents heaven, angels, royalty, spirituality.

Last week I am again asked the question. "What color is your grief?" The first thing that comes to mind this time is black. Deep, solid, unpenetrable black; a dark abyss; a black hole of loneliness, sadness, despair. After a week, my answer remains the same. Now, I ponder the difference between the first set of colors and the last. It is easy for me to see that the first set represents Colby. The second represents me.

My grief is a black hole, a huge black hole, but around the edges there are other colors. Thin uneven lines, partial lines and strips of colors. The colors swirl, move, appear and disappear, mix and separate; and are constantly in motion, forming and reforming. It is windy at the edge, but I am a short distance away. I do not feel in danger of falling, or being blown, into the dark vortex. But, I am fascinated by the swirling colors and peer intently at them trying to discern shapes, paths, clues, direction, guidance. So far I am unsuccessful in this. But I feel the answer is there, developing, ready to burst forth at some as of yet undetermined moment.

This is not a dream or a vision, but more of a feeling, a knowing. I wish Colby were here to talk with about this. He would have some fabulous perspective, thought, idea I have not considered, and without him, will probably never consider. Today is a day I feel his absence deeply. But when I think of my colors, they indicate Colby is in a better place and is not in pain. That thought helps as I watch my swirling mass of colors, and wait.