2/11/12

On Raising an Angel

Since writing this, I've been trying to decide whether to post it.  It's a personal recollection about a painful experience.  I'm speaking about the birth and death of my daughter, Holly.  Today would have been her 29th birthday.  "Would have been," except that Holly lives only within the confines of my heart and the solitude of my memory.  Holly's memory is a precious gift.  We don't gaze all the time at something valuable; rather, we bring it out from time to time to admire and to touch.  The rest of the time, we carefully pack it away, knowing it is there for us when we want to bring it out again.  Today is one of those days.  My blog is about my life, and for today, this is what's on my mind.

Holly was a full term baby.  She was born with a rare and random chromosome anomaly known as trisomy 18.  You can read more about trisomy 18 by clicking on the link I've provided.  In short, it's similar to Down's Syndrome, in that she had an extra chromosome.  Children with Down's Syndrome have an extra of the 21st chromosome.  Holly had an extra of the 18th chromosome.  Here is a picture of her genetic karyotype.  Notice that the rows of chromosomes are lined up in pairs, except to the right of the third row, where there are three of the 18th chromosome.



You can also see her double X chromosome in the last row to the right, indicating that she is a girl.  Contrast this with a normal karyotype.  This child has two of each chromosome--one from dad and one from mom--and you can see the X and Y chromosome to the right in the last row, indicating that this child is a boy.



Holly gave every indication prior to her birth that she was completely healthy.  My husband and I went to the hospital and gave birth as any parents would, waiting with excited anticipation for the announcement of her gender.  We were stunned when we were told within five minutes of her birth that her condition was "incompatible with life," and thirty-six hours later, Holly died.

It was unlikely that such a thing would happen.  These types of random anomalies ordinarily happen in cases of "advanced maternal age".  I was just 28 when she was born.  We had a perfectly normal son, Erik, and nothing like this had ever happened in either of our families.  We were told that our chances of having a repeat event were minuscule, but Holly's death was so illogical that it was difficult to take much comfort in those reassurances, or much of anything else either.  I descended into an abyss of sadness that I had never before experienced, and nothing has ever touched me as deeply since.  She was the last thing I thought about when I fell asleep at night, and the first thing I thought of when I awakened in the morning.  Her death drained the color from my life.  I felt numbly detached from my day-to-day existence.

It's strange to say, but when one loses a child, the child only ceases to exist in the minds of others.  To the grieving family, the child continues on, growing and changing in a might-have-been chronology.  For example, on the day Holly would have graduated high school, I found myself strangely fascinated with the goings on at the high school graduation ceremony.  We were out on our boat on the river when I looked at my watch and noted out loud that the graduating seniors would be receiving their diplomas soon.  The others on the boat looked at me quizzically, obviously wondering at my interest in these kids who were no relationship to me.  Even I thought it was strange. 

We were in separate cars as I drove home that evening and as I passed the high school, I noticed the lights on and craned my neck trying to get a glimpse of the graduates and their families.  It occurred to me later that even though Holly wasn't physically with us, I had raised her every day of her might-have-been life.  Every step of the way, I had imagined what she might have been doing at a given age.  In my mind on that evening, she was receiving her diploma right along with her would-have-been age mates.

Parents of living children take pictures and collect mementos of their child's life.  The parent of a dead child does the same thing.  The difference is that the parent of a dead child constructs those memories from anything and everything that comes along that might have been relevant to the child's life and death.  Of course, I saved little mementos from the hospital, like the card on her bassinet:



and her hospital birth certificate with her little footprints stamped next to my own finger print.


When a person is shaken to the very core of their being by an event as devastating as the death of a child, these mementos can be very important.  They provide tangible proof of their dead child's existence.  The grieving mind is not easily convinced of the reality of the situation.  Sometimes it's nearly impossible to believe that such a thing could happen . . . to me and my family. 

A few months out I read a book entitled, When Bad Things Happen to Good People, by Harold Kushner.  It helped me to heal, and it changed my life.  Kushner pointed out that the dead depend on the living for their immortality.  The book helped me to see that Holly would be remembered by others based on how my family came through the experience; and so I made it my mission to make her life touch others in a meaningful and positive way.  I wanted to teach others how profoundly these little lives touch families.  I wanted others to know that their deaths are not easily put aside nor forgotten.  I became an active spokesperson and teacher and helped to start a support group for parents who had experienced losses in pregnancy.   I wasn't expecting it at the time, but working with grieving families would set me on a path to a career in social work.

When her 20th birthday came around, I began to feel as if I'd done as much as I could for her as a mother.  My mission felt complete and I was moving toward scaling back my work with grieving families.  After so many years of keeping her memory alive, it felt as if the time had come to let her little soul rest in peace.  Children naturally grow up and leave home, and it was time for her to go too. 

My husband and I decided to go to the beautiful and historic St. Johns Bridge which spans the Willamette River in Portland.  We had in mind to say our good-byes to her by dropping flowers into the river with the idea that they would make their way to the Pacific Ocean where her ashes are buried along the Oregon Coast.  In general, February is a cold, gray, rainy month in the Pacific Northwest.  Nevertheless, her birthday turned out to be bright, sunny, and warm that year. 

We walked to the middle of the span and dropped our pink carnations into the water. 



They floated right in the middle of the channel, and we watched until they drifted out of sight.



We talked about it for several days afterward, wondering if the flowers had reached the ocean by then.  It was a lovely way to put her memory to rest.

I don't think or speak about Holly very often any more, but her birthday never goes by unnoticed.  Some years I pay more attention to it than others.  I've noticed that when she reaches an age that was significant in my own life, I think about her more and wonder what she might have been like had she been born healthy and whole.  I thought about her more when she would have been 25 because that was my age when my first child was born.  I imagine I'm thinking about her more just now because I turned 29 shortly after her birth.  It is still easy to remember the sadness I felt on that day. 

Holly's memory generates sweetness rather than sorrow now, but I don't imagine I'll ever stop wondering what she might have been like.  If you've read this far, I appreciate your interest in her sweet little life.  When I was gathering mementos for writing this entry, I took her picture out of its frame.  Behind it I found one of the things I collected over the years.  It was a clipping from an article that appeared in Time magazine some years ago.  The article was written by a woman who had experienced five miscarriages and who had no living children.  I wish I knew her name so that I could give her credit.  She did such a beautiful job of writing about how it feels to be the mother of a child who dies young.  In closing, I want to share it with you.

You have children--not in the world inhabited by other people, but in the private world of your heart--you have children you will never get to mother.  They are secret children, like those children you read about, confined to an attic or a closet.  No one but you recognizes their existence; you yourself don't even know their form, their genders, the shape of their noses, the color of their eyes, and yet the strength of their souls flutter inside your heart like a caged bird's wings.  As a mother, it is your job to get them out into the world, but you have failed them hopelessly, and so they haunt you, inhabiting a hyperreality that in the middle of the night feels truer and more real than any reality you have ever known.  They are your children, and you are their mother.  And yet you do not stop your life for them.  Instead, you go on.

48 comments from clever and witty friends:

SoozeM said...

What a beautiful post!

Vroomans' Quilts said...

Thank you for sharing a delicate, yet beautiful post.

Samantha said...

Thank you for this beautiful post about your daughter.

Pauline said...

I'm sitting here with a lump in my throat and tears in my eyes. What a heartbreakingly beautiful and courageous post about your daughter...

Mhairi said...

Thank you for your delicate and passionate post. Your way with words certainly made this one of the most beautiful posts I have ever read.

Kate said...

Beautiful post.

Dana Gaffney said...

Through the tears, Happy Birthday Holly, you are so loved.

Dirt Road Quilter said...

Thank you so much for sharing your precious Holly with us. There are no words. Just know that I have been touched by your tender words and your sweet little girl.

Diane Wild said...

What a lovely tribute to Holly. Thank you. Now, I'm going to wipe my tears off my face. Have a good day.

Kathy Felsted Usher said...

A very touching post. I think it brought a tear to all our eyes.

make.share.give said...

Thank you for telling us about Holly's part in your life story.

Sue said...

I read this post with tears in my eyes and find you to be such a courageous woman. Losing a child is very devastating and though in time the pain is lessened because of time, the scars of it remain always.

This is a lovely tribute to your precious child and I thank you for personal reasons for sharing it with us .

Blessings,
Sue

MooseStash Quilting said...

Oh my goodness, it was hard to read to the end thru the tears. What a beautiful story of a equally beautiful little girl. I am so glad you decided to post this. It gives us all a reminder to take a moment and really see life for what it is. I am a true believer that there is a reason for everything. God knows the reason for taking Holly home so soon!

Rachel said...

So incredibly touching. Happy Birthday Holly.

KrisD said...

5 years ago in March, I wrapped my niece, Anna, a Trisomy 18 baby in the first blanket I ever crocheted. She was delivered at 28 weeks. Sending love and peaceful thoughts to you...and Thank you, for sharing your daughter with us.

JustPam said...

I am so sorry you lost a child. I cannot imagine the pain and sorrow you must have felt. Even Holly's short life has brought positive results in the outcome of your life and helping others.
I have a dear, sweet grandson who has a terminal disease. I hope that we can heal as positively as you have when his time on this Earth comes to an end.

Quilting "b" said...

Holly this is truly a beautiful post and tribute to your daughter. I lost my son a year ago and my blog is dedicated to him (DanNy boy Quilts). I have experianced all of the emotions you have written here and will for the rest of my life. The pain of losing my boy was and is the most difficult thing I have ever had to deal with. Blessing and a warm conforting hug to you and your family.

LethargicLass said...

Thank you for sharing with us, Holly is lucky having you for a Mom, being loved so much.

Hugs and love!

AlessandraLace said...

Dear Barbara, I read this post about your painful experience that you have been able to transform into an opportunity for growth and help others. Holly is in my heart too. Happy birthday Holly. A big hug

Mimi said...

I am choked to tears by your beautiful post and sharing Holly with us. Thank you.

Wendy said...

What a tender and touching post. And although I haven't experienced anything close to this, your words have helped me in ways I can't describe at this moment. May you and your family continue to find peace in Holly's memory.

PJ said...

Barbara, thank you for sharing your loving post about Holly.

Sallie said...

There are no words, just HUGS!!!

Sand and Sunshine said...

What a "life happening" that happened to you. Reading your words I'm certain you helped many others perhaps numerous others begin to feel less empty inside. I see in wiping away my tears I flung one onto the computer screen. As you have cried a river and moved a mountain, you surely don't need another tear, but instead a thank you for taking the time to share the life of your precious little one.

Wendy said...

Thank you for putting into words what my mother never told me about the loss of her first child. Gentle hugs and soft angel kisses.

Marls said...

You made the right decision to post. Thank you for sharing Holly and your journey with us all.

BillieBee (billiemick) said...

Thanks for sharing your daughter Holly with us.

Mrs.Pickles said...

What a beautiful post and tribute to Holly.

Stray Stitches (Linda G) said...

Thank you for sharing your beautiful tribute to Holly and what you went and continue to go through.

Leah said...

Thank you for sharing. Beautiful post.

Denise :) said...

I really appreciate your willingness to be open and share. I sent Joc the link so she could read it when she was ready. This was a sweet post and timely for us as we near what would have been Everett's first birthday. Hugs to you. :)

Judee said...

WOW, so beautifully written. So well said. Thanks for sharing such a private experience.

Michelle said...

Thank you for sharing this! A friend of ours son just passed away at 10 months old a couple of weeks ago due to a misdiagnosis. I'm going to go get that book for her. Your post is a blessing. I have never heard of that book before. Thank you so much!

Teresa in Music City said...

Barbara, I hope you take comfort from all the love and support you receive from your blog friends today! Words cannot really reach the part of you that hurts, but our hearts are reaching out to yours in love and appreciation of your trust in us by sharing such a personal and important part of your life. I too believe blogs should be about our life, as you said, and applaud you for sharing yours!

Sending hugs & God's comfort out to you, today and everyday! =^..^=

Andee said...

What a beautiful angel you have for a daughter. It is amazing how one thing can change our lives forever. My oldest son has high functioning autism and having him and raising him shaped me into who I am. I sometimes think how different I would be if things had been different (for good or for bad) but tell myself everything happens for a reason..even if I don't know what it is. You and I had different though difficult paths and I am glad to see that you have found peace as I have.

quiltzyx said...

Thank you for sharing Holly, on her birthday, with all of us. It seems that blessings come in many different ways.

Susan said...

Thank you. You and Holly have touched my life.

Needled Mom said...

What a beautiful post you have written. Having been a NICU nurse for many years, I have often remembered the babies who did not survive and wonder how the anniversaries touch the families. We think about all of you often and remember you in our prayers.

Trisomy 18 has been center front in the media lately with a presidential hopeful having a daughter with it. You must have been so shocked 29 years ago - before all of the testing was performed.

Anonymous said...

Barbara, I'm so sorry for your loss of Holly. Thanks for sharing! A second cousin moved from Montana to Oregon about six months ago, leaving her Trisomy 18 daughter in a home in Bozeman. Her daughter is 38! I think that is almost unheard of for a Trisomy 18 baby. This past Christmas she flew from Bozeman to Eugene by herself! Her father deserted her at an early age, but she has truly been a blessing to the rest of her family, as Holly has been to you. Sharon - ssauser@dishmail.net

Janet said...

Your story is sad but sweet. Thank you for sharing it with us.

Linda Coleman said...

Thank you for sharing your story Barbara. I know it can't have been easy to write but it has put me to shame. I was feeling angry because my 17 yr old daughter had not tied her room but left it in it's usually "looks like a bomb hit it" state, then I read your story and I know that what I was feeling was so trivial and thinking that if I had lost her after she was born that I would give anything to have that "untidy" girl back. Thank you for making me see the good (like the hug and snuggle she gave me on the couch) and not the bad.
LindaC

Kathleen at Rose Prairie said...

Thank you for sharing such a personal part of your life. You have touched many.

Vickie said...

Thank you for sharing this beautiful post.

Sarah said...

Such a touching post - I have no idea what to write to convey what I'm thinking. The fact that Holly's death lead to your social work career particularly struck me.

Kathy4aday said...

Thanks so much for sharing your story. Birthdays are the days to remember. I am glad you have never visited such a dark place again. When my daughter had a preemie still born last December, I did visit my dark place again, as dark as when I lost Matthew. But this December, she had baby Zara. Life is full of sorrow and joy.

We share our quilts and our angels!

Lynda Halliger Otvos (Lynda M O) said...

Deeply touched by this poignant story and your willingness to share. Namaste

liniecat said...

Barb am so sorry, but what a wonderful post this is, in both commemoration and remberance of Holly's being. I think if you've carried and bodily nurtured a child within you then you're a mother, whether that child travels to term and life thereafter or not.
Its a still a remarkable presence of life to be grateful for and to cherish just the same, despite the sadness of loss and grief as in Holly's life.
Holly added richness to life for you both and that's so evident in this post, its a privilege to read it.

Motherdragon's Musings said...

Thank you for sharing such a personal and poignant post. Hugs to uou xo