Friday, July 4, 2008

On A More Serious Note

The following story is re-posted with permission from Candid Carrie.
Carrie is a mother of MANY. This is her story of the birth and loss of one of her twins.
When pregnant we never want to think about the possibility of loss, however, sometimes loss comes. Life has a funny way of twisting and turning no matter how much we think we are in control. Carrie shares her thoughts about how friends and family can truly be supportive in these times. Thank you Carrie for allowing me to share your story.

I need to speak about something serious today. I don't do that very often, so bear with me.

A couple of my friends (yes, even if I have never actually met you guys) that I know from blogging have had their lives altered because someone they know experienced the death of a child.

Having been there myself, I thought I would share my experiences with the resulting aftermath and reassure you that there really are some very simple ways that you can show your support during these difficult times.

First of all, let me tell you briefly about my situation. I say briefly because this post isn't really about me as much as how you can help others, but I don't want to leave anyone walking away without understanding where I am coming from here.

November of 1988, I had twins. I delivered at 38 weeks, a boy and a girl, each 18.5 inches and 5 pounds 2 ounces. No, they were not identical twins … one boy, one girl (fraternal twins). Madeleine was first, she came whizzing out, Apgar scores were six and eight and she was gorgeous, absolutely gorgeous.

Travis was next and it didn't go that smoothly. The umbilical cord was wrapped around his neck and my contractions had stopped completely. I was being prepped for a cesarean section, the sedatives were being administered and I told everyone to stop. I said I was delivering this baby now and I did. There were no contractions but I pushed and focused and it was really hard work, but out he came. Apgar scores were two and four. He was whisked down the hall at about six that morning and I held him for the first time at 10:30 that night.

I'll finish the story of Travis quickly, Travis is my nineteen year old son. He graduated from a Catholic boarding school in 2007, one of the top in his class. He finished his first year at Marquette University in Milwaukee Wisconsin this past May. He has played piano for fifteen years. Yes, fifteen years. He has played for schools, for churches, for weddings, for fun, for money, and just for the sheer love of it. He is back this summer working for the fifth year at a Cub Scout camp as a site manager. The only time this glorious child ever caused me any grief was those few minutes before he was born.

Now, back to Madeleine. During the commotion of Travis' birth, I was unaware that Madeleine's situation had changed. She was doing something called "choreatrophy." They weren't sure if it was a seizure or tremors and they decided to send her to a nearby hospital in Milwaukee. She was baptized and left Sheboygan about 10:30 that morning.

Obviously, there is much more to say about that day, but this isn't the time or my purpose.

Madeleine got her first gastrointestinal tube at age 3 months, her first tracheotomy tube was fitted at 13 months. She had twenty-four hour nursing care in our home for all seven years of her life.

Her official autopsy report indicated that had an undiagnosed (means they never really knew what it was) degenerative (means that she was always going down hill) neuromuscular (brain connecting with muscles) disorder (something is definitely not right here).

I have much more to write about Madeleine and I wasn't even quite ready to reveal all of that right now, but I needed to let you know about her to give myself some credibility on this topic

As I stated up front, I want to tell you things that you can do to help parents that have lost a child. This is a list of really simple things that can have a monumental impact on the child's family.

During that first week to ten days after the Madeleine's death, I was flooded with cards and mail (this was before e-mail). I opened and read every single piece and I was overwhelmed. There were cards from people who had lost a child, people who knew someone that had lost a child, people who had children that were born the same day as my child, oodles and oodles of people sent cards and letters.

But, here's what had the biggest impact on me. The cards that came after the two weeks were over. Those were the cards I remember the most vividly. The unexpected cards weren't an "after" thought, they were more of an "I'm still thinking" thought.

I would ask that if you know of someone in this situation, continue to send mail. Real mail, not e-mail. Something tangible, nothing says you care quite like a piece of mail. No need for profound wisdom either, just something simple like "I was thinking about you today" or "I am here if you need me" or anything, even just your name. If you can work something out so that a few people are sending cards on a regular basis, that is fantastic.

You will know when to stop sending the cards because the recipient will probably let you know. I was able to say, "Your cards have meant so much to me, but I am doing much better and I appreciate everything you have done for me." People get to that point at different times.

Another project that means the world is to have one person assigned to collect photographs. Quietly collect as many pictures of their child as you can and there is no need to worry about whether or not they are flattering photographs. Just get them from anyone who may have them. You can use an e-mail or word of mouth for that purpose.

Once you have collected them, put them on either a c.d. or whatever they are called today or set the photographs in an attractive box. Just don't put them in a scrapbook or photo album because that right belongs to the family. Even if you think it would be the sweetest thing to put them in an album, the family may not be ready for that or the family may believe it is therapeutic for them to process the pictures themselves.

After you have finished this project, tell the parents that you have collected all of the photographs that you could find and you will hang on to them until they are ready. I wasn't ready for two years. I never forgot that someone collected the pictures, I just wasn't ready to have them in my possession. Because of Madeleine's condition, she did not photograph well at all. Once she hit three months of age, the disease process sort of took over and altered her appearance. I was grateful to have the pictures collected, I was grateful to have someone holding them for me until I was ready, but my favorite pictures were and always will be of her as an infant.

Now, listen very carefully because this of the utmost importance. Don't underestimate the position of holding something until someone asks for it. If done in the right frame of mind, the keeper of the photographs has a thankless task. A great deal of energy went into the collecting and gathering and once you've made the announcement all you can do is wait for the day you hand them over. That is literally all you can do. To bring it up again would be inappropriate. The parents know you have the pictures, just wait until they are ready to have them in their possession and that works on their timeline, not yours.

Get out your calendar, your date book, your blackberry, whatever it is and record the day the child died. And the day of the funeral. And the child's birthday. Now put another note in the calendar a week before those dates and call your friend at that time. Every year.

Make a phone call and say, "Hey, I know it is getting to be about that time of the year and I want you to know I am available if you need me. It is alright if you don't need me and it is even alright if you call me in the middle of the night while everyone else is sleeping." Follow up with a tangible card and the offer again, include your phone numbers to make it more sincere and easier. And then really be there if you are needed.

I have friends today that never knew my daughter, but they know me and even if they don't know the exact date of the birth or death they are friends that I can trust my emotions with no matter when they surface. My friends also know that we never get tired of hearing our child's name, so please use it. Usually we spent a tremendous amount of time selecting that name and we weren't anywhere near hearing the end of it.

It is a weird club to be part of, parents that have lost children and there are days that we say and think the most ridiculous things but because we belong to that club we need to be forgiven quickly.

And finally, this needs to be said although it shouldn't need to be said. If you never lost a child but have lost a pet and you think you know how the parents feel, trust me … you don't and it is the last thing any family wants to hear is how sad you would be if you lost your dog because your dog is like your child.

Seriously, I've have lost many pets on my life's journey and there isn't any similarity at all. However, all "pain and grief" is relative and the loss of a pet "pain and grief " is genuine and deep and permanent. It just is in a different "pain and grief" category than children

So, I know this is a long post and I do have more ideas and ways to help families but I'll stop for today because I know this is a lot to handle right now and I know when readers stop here this isn't what they really expect.

And if you read to the bottom of this, I admire your tenacity to hang in there. I know it was a tough read.

It is alright if you don't leave a comment, this is awkward and you don't probably don't know what to say. You can close my blog and walk away, but please keep the information with you. I hope you never need to use it.

I do want you to know that it has been twelve years since Madeleine died I have the ability to look backwards and see how all of it lead me to be right here, today, sharing this with you.