Wednesday, February 29, 2012

For Moms/ Dads who have lost children and supporters

It ocurred to me that someday a parent (or a friend of a parent) may be reading this who has just sat down after the emergency responders leave or after coming home from the hospital. You are crying and screaming, or maybe you are quiet because there are no words to talk about the depth of what you are feeling. Your child is gone, but your love is still there, and pain swells to fill the void where your child should be. Your next step once the stunned silence sets in, before family and friends surround you or after they leave, is to search on the computer for some sort of support, cause, or meaning. Maybe hope that someday everything will be 'ok' again. This might be how you found me.

If you are a friend, there is an ebook here:
I want to sincerely caution friends and family on attempting to force their friends 'back into life'. Many times families who have lost children may have PTSD. They may need to work on the most hurtful aspects on their own time frame in a fashion that they can control. While you may see the need for them to do things such as accept your baby because it is a part of life, sometimes when they look at your child they may be flashing back to the first time they saw their child dead or their mind fills with the images of what should be (particularly true if your child is the same age). Let them know you understand it may be difficult and ask them to let you know when it is ok to introduce or reintroduce your child. Understand that the meetings with your child included may need to be short. Always provide a way for them to escape safely, and consider how long they can handle children. You may need to leave early or provide a sitter. It is not reasonable to expect them to always be the one to leave in social settings, although that is what is typically expected. This sets them up to be viewed as antisocial and makes them feel intense alienation that may permanently affect relationships with friends and family. This is different with every woman, if your children played together they may not want to see the other child at all or it may be a link to their lost child. In family situations (such as weddings) where other children are included in photos, they may not want to participate (to them there is always a child missing and no photo is complete) or if they can, it would be exceptionally kind to offer a way to include an object or picture of their child.

To begin with, look at this as a process with no set path. You will feel like you are making progress, only to be thrown back into raw pain the next day or the next minute. Also realize that this path will not erase this experience, no matter how much we wish, but it can lead you back to loving and happy memories of your child again. I am told not to be afraid of forgetting, because we will never let go of our children in the way that matters.

I am not far enough along to tell you what this journey will ultimately look like. But I can tell you that the first step in regaining something, is to reclaim your child from his/her death. What I mean by this, is to seperate that horrible last memory from the total of your child's life, whether you were blessed with many years or only time spent as they moved in the womb. You may need an experienced counselor to do this, or a stable support group. Avoid professionals if you find they really don't know what to do with you, and groups that make you feel worse rather than better. Sometimes the right group or support early on will be a different one than later. If you get to a point you don't want to talk about the death, but want help remembering your child's life, you will find that you outgrow some grief support groups. I also encourage you to reach out to groups when you are ready. It will look something like this: everyone has gone on that previously supported you, but you do not feel ready to move on, or perhaps they are there but nobody knows what to say and you need to talk to others who understand first hand.

Don't completely rely on your spouse to fill every need. You have both been critically wounded, but each of you will need different things. You don't become a Doctor after being in a wreck, you can't become a grief counselor overnight after you lose a child. Supporting each other is vital, but you can't 'fix' each other.

When you begin to look for support, look for appropriate support. Many people will throw you in the grief category, perhaps even the miscarriage category, because they don't know what to do with you. But it isn't that easy. You haven't lost a Grandparent who lived a very long life, or an early pregnancy mainly intermingled with visions of the future. Some groups will even put you in grief groups with divorced people, but you cry out that you would be happier just knowing that the person you love is still somewhere on this earth.You also aren't only grieving, you have faced a horrific event- finding a child you loved dead, perhaps facing futile hospital attempts, or maybe even never getting to take your child home. Grief mingles with a lost future and 'that day'. 'That day' can be post traumatic stress (PTS), so if you find yourself shaking when the memory is triggered or having a violent rewind of events, it might be necessary to find somebody who specializes in PTS. PTS and the what ifs will steal your child's life, the happiness you had, and should still be able to have one day (when you remember with happiness a glimpse of his/her face), from you. Eventually when your child's name is said, sadness should not be your only emotion.

I also want to caution you to be very careful of books and groups. If you believe in God or Heaven, seek out support that will affirm you. Your faith in anything good will be challenged, you will feel a total lack of control, and you are vulnerable. If you think there is a God, wondered, are open, or even are willing to try, seek him out even if you have never had a relationship before. It is absolutely ok to be angry at this point, if you are mad let him know it, he has broad shoulders and can take it. Even this is prayer as long as you allow quiet time for an answer. It is when you do not pray at all that no communication is flowing. Although you are angry and hurting, or lost in the pit, if you stop and listen you may hear back. It may not be at that moment. The answer may be no. But you are heard. Support from people can be addictive, but it will fade. Seek out something permanent. And yes, it is ok to be a Christian and grieve... there is no need to fake happiness when your world has crashed around you. One day you will smile again or more often, but your primary business is mourning, and it is hard work. Maintaing appearances steals energy you will now have in short supply, and as a long term strategy does not work (although it can be helpful in an unsupportive environment in the short term, just enough to get you to safety).You may find that you have new views in conflict with what you have been taught- as long as you pray about it and receive an answer, find no conflict with the bible, I think what matters most is the relationship that we have with God and not the rules created by people. I do give psychics the fish eye, primarily because I know what I want to hear so badly but do not want to be misled by someone with ill intent (or misled themselves) who sense that. I try to ask God directly for comfort.

There will be times you don't want to be here. You may not be suicidal, but you may want to be in Heaven. You need to recognize that your child lives on in a strange way through you. The way you are positively changed ('the glasses') is part of how your child still reaches out into the world. Live in such a way that your child will be proud of you being their parent. I also gain a little bit of comfort in knowing that the half of me that I gave to my son is still alive in me, and the other in his Dad. His sister carries pieces. When the darkness hits, hold your hand out, seek a close friend or family member who will come and get you. This is when you need to see if all the people that offered support are available- so many people do not receive the support they need because the people do not know what to do... and you do not ask! (And here Dear friends is where you can help.... call once a week or every couple of weeks and just say "I am thinking about you, what do you need?". Visit. If the house is a mess, this is par for the course. If they won't let you help clean, offer to hire a cleaning service. It may be easier to them to allow a stranger to help with this than someone they have to face again.

If your child is on life support, please consider organ donation. I had a friend in highschool whose parents, family, and friends gained a great deal of comfort in knowing that a lot of people were living as a result. It was nice to think that something was still physically alive. I was not given that option, and I wish it had been available to us.

You will also receive or see painful reminders of your child's death. Sometimes one parent will hide them or take care of them alone in an effort to spare the spouse. Ask before you start getting stuff what your spouses preference is, it can lead to a feeling of being excluded if you do not. The important stuff we talk about, the less important things (such as insurance bills stating nothing are owed, or the SAM's club circular with safe sleep advice) I deal with appropriately on my own, and vice versa

Be careful of making large permanent decisions during this time frame. A home that now frightens you when you are alone, may become a haven where you remember your child laughing or smiling later.

I do want you to know that it is ok to get rid of the most painful reminders of the death, but be very careful or purging (or allowing others to) things that remind you of your child. Right now everything is painful because you feel the loss, but as time goes on, first you will find yourself touching or smelling things (although painful you may feel an overwhelming need to do this). Consider storing things in closets or nearby if you do not want to leave them out. You may even find your need for seeing or hiding things changes from time to time and that is ok.

There may or will come a time when you are ready to go through things. I encourage you to start with the obvious reminders of the funeral or death. keep what comforts and get rid of the rest.With other things ask yourself if you want to use them again... Are you planning on more children? If so you can think of these things as hand me downs that a normal sibling would get. Or maybe you can't. Either is ok. I don't personally know about getting rid of things, as I can not part with anything yet... I am not placing a timeline on it right now. I have asked family members if there is anything in particular that they want, as I would rather have another person treasure it than it remain in a box or perhaps later get thrown away. Consider donating to a woman's shelter or other worthy cause such as a crisis pregnancy center.

Belongings are also something that may be a source of conflict over different ways of mourning. When you are ready to put them away, how much, and what to keep. It isn't easy. I have let my husband get rid of the really painful things for him, but for now I am like a hoarder with the rest. It's not unusual for cribs to be left exactly the way they were for a year or even longer. It is not unusual for cribs or pack n plays to be the first to go, or even be pummeled.

As the transient reminders of your child fade, begin to replace them with more permanent things that give you comfort, and be creative. Pumpkin from holloween, scavenge the seeds and plant next year. Clothing: make a quilt or ask someone with the talent to help you who has asked what they can do. Create a charm bracelet with your child's picture (and any siblings) on an online store, create a book with all the pictures to look through whenever you need it. Dry some of the flowers that were sent, if they comfort and do not make you sad. Friends- consider planting a tree instead of flowers, the parents may prefer something more permanent.

Set rules for yourself to live by. These rules may look something like: If I am doing something I would do with my son here, it is not a betrayl, but honoring his memory as I remember him doing them with us. Laughing, eating, going to the store... they are all ok.

Take care of yourself. Eat. Drink. Get up. Repeat. There is a point when I literally had to make a concious decision to live, because quite frankly nothing tasted good and even water was not on my mind. I had to pick out people I loved and tell myself that I owed it to them to keep breathing. Start exercising when things quiet down. Set up an appointment for your annual physical. Grief is really hard work and can wear you down. Don't brush aside abnormal things as related to grief... I sincerely believe there is such a thing as dying from a broken heart. Your body may even physically ache, in your chest or your arms where you held them... You may be cold a lot. I have a pair of really loud socks my Mom knitted me, and on days I need courage I wear them.

I can't overstate the value of a friend or relative dragging you outside or to the gym to exercise. It does a few things. It forces you out of bed. It releases endorphins that may help pull you out of the saddness for at least a short while after you heal a bit. It is an ideal time to start new habits and reshape yourself. You may even get a much needed boost of confidence as your body changes for the better.

I do have to warn you that the first few times you work out you may find yourself crying. I have heard one person say it is sometimes painful once your body and mind begin reconnecting during this time. Exercise helps the process along, and if you begin crying in the park on a sunny day or on a treadmill, it is absolutely ok.

Going to work the first time is hard. I carry my son's sock in my pocket, and wear a small pin with blue footprints on my coat. It makes me feel like he is there with me when something happens that is tough. I also wear the pin because I suspect that other parents who have lost children, infants in particular, will recognize what it means. We have gained nothing from this pain if we can not at least support each other. I want there to be a cue if another Mom or Dad is having a rough day and needs to talk.

There will be times in this journey that it seems like yesterday your child was here, or that they are just in another room. You may find yourself counting them on a form for a hotel on an upcoming vacation. There may be times your mind can't process everything and it tries to default to the time before you were pregnant (He seems like a dream but the tree planted in his memory is outside my window). It is all normal and doesn't reflect how much you love your child.

Do not be surprised if you feel like you are a new person. You are choosing what this new person will look like. People that have lost a child are either the most empathetic or the least, and this is up to you. You can choose to keep the pieces of your old self that you like and blend them with the new (that is worth keeping). Keep your hard earned glasses (you will now see people and wonder what is going on in their lives, asking yourself why they are cranky or sad), your new priorities, and the recognition that a lot of things people place a lot of value in are just plastic junk. Try to weed out gradually what you do not like. You will never be naive again. But you will never take people or things for granted if you choose to remember the hard lessons. Regaining a sense of control is one thing I still struggle with, I do not know how to balance the realization that bad does happen with faith. I feel a bit off kilter, like the scales were overturned.

With this new person you may find that old friends drift away as they expect you to be your 'normal' self. But in this void you will also find new friends with similar values, perhaps who have walked a journey that looks something like yours. And it is ok.

When you feel like you are alone, realize that you are actually incredibly normal for those going through something horrendous. Don't be afraid to reach out.

I can't tell you that I have and do always walk this path as well as I feel I should, but I hope that I walk through grace.

God bless you. This is and will be a difficult journey to walk, but you are never alone if you chose not to be.

Feel free to write any questions you have, and I'll answer them. If you need immediate help, please call first candle at 1-800-221-7437.

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