Grief Journey

Before I started regularly reading "blogs", and before I created one of my own, there were a couple "caringbridge" sites that I frequented. I continue to check those, along with all the "blogs" as part of my "learning curve" (or my addiction to reading other people's stories...I prefer the former description!). One of them is now the journal of a mom who lost her daughter while she was waiting for a liver transplant. Her words have helped me SO much during my journey as a nurse caring for very sick kids and their parents. Nearly a year ago, she wrote about her grief journey. It was written at a time when we had lost something like twelve patients in a three-month period that extended through the holidays. It was a very sad time, and her words helped a great deal. As I have been reading more journals of families who have lost children, I decided to post her words here (even though no one REALLY reads my "blog", I decided it is worth sharing, if just for my benefit alone...to remember that everyone deals with grief and loss differently, in their own time, and some helpful hints on some things I can do to make the grief more "bearable").

So, here it is:

Journal
Saturday, February 17, 2007 2:29 PM CST
I haven’t talked about the grief journey for awhile, and I think it’s time.I get a lot of emails from parents who have lost children, wanting to talk, wanting reassurance that what they are feeling is okay, and mostly asking how to deal with friends and family who just don’t “get it”.So, today is going to be about that.

Most of the things I am going to say here are from my direct experience with the loss of a child. Other people may have different opinions or experiences, and that is completely valid. I can only speak to what I have been through personally.

Just like there is no greater love than a mothers for her child, there is no greater loss. It is not something that can be put into words, anymore than you can tell someone what it feels like to give birth. Have you ever tried to explain to someone the love you feel for your child? Only another parent understands that love. Only another parent can understand that loss.

As a parent, you can IMAGINE the pain, and you can empathize with it. But, you really cannot know how it is to live with it, day in and day out. Every day, simple, common things bring up painful memories. Just the other day, for me, it was froot Loops. I have a froot loop story, that I won’t bore you with right now, but suffice it to say, it’s a hospital memory, it was an important day, and froot loops were involved. So now, froot loops make me sad.

As do, a million other things….playgrounds, theme parks, ice cream, American idol, church, music, silky pajamas, fun shoes, giraffes, Clifford books, cheetah girls, sno-cone machines, crafts, American girl things, baseball, school, valentine’s day parties, and, as I said, a million other things.

I saw a cremation scene on “Desperate Housewives” that dropped me to my knees. It still haunts me. The other millions of viewers probably thought little of it. I drive miles out of my way to avoid the hospital, the funeral home, the middle school, lots of places….

We live with constant reminders of what we have lost. Nobody knows what that is like, until you have lived it.

So, as our friends, the first thing is to realize that you don’t really know what this is like. And that is Okay. Believe me; we don’t want you to know what it is like! But, if you acknowledge this, you will be less likely to offer, what is sometimes hurtful, advice.

So, I am going to share a few things I have learned along this road, to hopefully, let you understand how you, as friends, can help those you love who have lost a child.

1) It’s Loooooong….. process. Grief has its own time space continuum. A week is a minute. A year is a month. Time passes, but grief stands still. In the beginning, there is no passage of time. Time may heal, and I believe it does get easier, but not in what most people think is a “reasonable” amount of time. Take what you think is reasonable, and triple it…and maybe…you will be close. I am 16 months into this journey, and I can see, that I am still at the very beginning.

2) Grief is selfish. Our feelings are so intense, that it takes all of our energy, just to survive. We have no energy for socializing, we don’t want to write thank you notes, or return phone calls. It can be a “full” day to just shower and change our clothes. And again, this goes on for a looooooong time.

Now here’s the part that isn’t fair. Just because we push you away, don’t answer your calls or emails, stop coming to church….that doesn’t mean we don’t need you. We need you to leave us messages that say “I love you, what you are going through is horrible. No need to call back, just wanted you to know we are thinking of you, and we miss you’. Even if you never get a call back, we HEAR those messages, and they help. We READ those emails and guestbook entries, and they help. We want our friends to continue to be there, even when the friendship (seemingly) becomes one-sided.

It is common for people to think, when they don’t hear back, “She doesn’t want to be bothered” Well true and not true. We don’t want expectations placed on us, but we do want, and need to be reached out to.And at the risk of offending some, let me also say, on this subject, it is NOT okay to abandon your friends. It is NOT okay to think that attending the funeral, or bringing one meal is enough. If you care about this family, you will step up, check in, send emails, cards, make phone calls…not just in the days and weeks, but in the months and years to come.Grief is selfish. It is not easy to be the friend of a bereaved parent. It separates out the real from the fair weathered in a hurry. And IF you stick it out, IF you become one of the few, well that makes you a hero. I look at my friends, and feel sorry for them…I am a lot of baggage to drag around, but I know the ones who have stuck, are in it for the long haul. The others, well, it makes me sad.

3) Sometimes, in trying to help, you can make things worse.I wish I had a dollar for every time I have heard, “you need to get out of the house”. No. I need my daughter back. Getting out of the house does not fix that, and you saying it over and over only puts unneeded stress and pressure on me.Here’s the tricky part….don’t stop inviting us places, just make sure you give us an easy out. Every invitation should come with the knowledge that we can back out or leave as our emotions dictate.Early on, the best invitations are to meaningful events, not just for “fun”. Movies and parties can make us very uncomfortable.

4) Please let us do as much as we can in our own homes. It is easier to have people in, that to go out. Our best friends will call and say, “We’d like to see you, when can we come over?” Thank goodness they do that, or we would never see anyone.Instead of inviting them out to lunch, offer to pick up lunch, and bring it over. Better yet, Give us the choice. I still have not been to lunch or a movie for pleasure. It is too hard. I have, however, had friends over for takeout and to watch TV. We love that, and our kids love it too.

5) Don’t ever forget our child. Let us know if you have a picture on your refrigerator, or if you listened to her music one day. People, wrongly, think bringing up the subject makes us sad. What makes us sad is having a special day or time with friends and no one mentions her. She existed. She was everything to us. And even if you don’t bring it up, believe me, she is on our minds.

6) We are still crying. Be okay with that. Tears won’t kill any of us. They are a normal expression of sadness. And we will be sad forever. We will be quick to tears forever. Please don’t say, “Don’t cry”. Just pass us the Kleenex.

7) I can be crying for hours in the morning, laugh at something at lunch, be in a fetal position by dinner. Don’t judge me. Don’t tell me I am too happy OR too sad. I am exactly where I need to be.

8) Help us keep our faith. Pray for us, and with us. Just saying “she‘s in a better place” isn’t as helpful as actually quoting us the scripture that TELLS us that. Tell us something about Heaven. Read about grief, read about Heaven, so your words can be a comfort to us.

9) Understand that we do not feel “normal” anymore. We don’t belong anywhere. We are forever changed. We are not the same people we were before this happened. But, we ARE still people. We still need our family and friends. I hope you take all of this in the spirit of love and friendship. If you are reading this, you care enough about someone in these shoes, to make a difference in their life.

From the brilliant Randy Alcorn’s book “Heaven,“Father, thank you that our gifts, and passions, and special interests, are not an accident. But, are part of the way you have wired us. Thank you that You have intricately designed each one of us to uniquely express Your Glory.”

Yes, this is one person's grief journey. Everyone has their own story. However, I think she does a great job of explaining some of the common emotions, and mistakes. It helped me...hopefully it can help someone else.