Friday, November 04, 2011

Photo Card

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Friday, November 05, 2010

The Gap by Michael Crenlinsten

The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one whose children are well and intact can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded.

A black hole has been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. To enter there is to be cut deeply, and torn anew each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain - a life sentence.

Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings in having lost them. Some go there with us, others cannot and through their denial - a further measure, however unwittingly, is added to an already heavy burden. Assuming that we may be feeling "better" in six months is simply "to not get it."

The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap - those, whose compassion and insight we need most, are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours.

We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us; sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons, even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience - and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us.

We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap.

Saturday, October 23, 2010

March of Dimes Speech #2

(delivered last night at the Signature Chef's Auction)

July 11, 2006 was a day that started like any other, but at the end of which, our world would be turned upside down. I was 22 weeks pregnant with a healthy baby. We were hoping soon to find out if we were having a boy or a girl, since at the 20 week sonogram, the doctor wasn't able to see. We would find out later that night, when our firstborn son, Brian, entered this world. He weighed only a little over one pound, and was only 11 inches long. We were told that he would not have a chance to survive, and 30 minutes after we said hello to him, we had to say goodbye.

We left the hospital carrying this bear. While the lucky parents get to leave carrying their healthy newborns, we were forced to make that long journey to the car carrying a teddy bear in place of our son. This bear wears the exact same outfit that our son Brian was buried in, and he is wearing his hospital ID bracelet. There were many nights when I sat and rocked this bear, remembering and longing for the baby who should have been resting in my arms.

I was diagnosed with Incompetent Cervix, and were advised that we could try again. Of course, this experience would be different. I would be high risk, and would see not only my regular OB, but an excellent specialist. Through it all, our love for our firstborn son encouraged and inspired us. We had so much hope that this time, things would be different.

Unfortunately, the surgery that I was given to try to keep my second child safe caused an infection and failed to protect him. Our second son, Sawyer, was born on March 31, 2007, at 22 weeks 6 days gestation . . .right on the cusp of viability. The NICU staff at St. Francis assured us that they would do everything possible to try to help our son survive the huge odds stacked against him. Those amazing nurses and doctors became our extended family. The work they do is nothing short of heroic. They are among the most incredible angels who walk this earth, and every day we are grateful to them for the love and care that they gave our son. Though he fought long and hard, Sawyer, could not win his battle for life. His little body began to shut down, unable to withstand any more. On April 11, exactly 9 months after our first son passed away, we were told that there was nothing more they could do, and we knew it was time once again to say goodbye. Needless to say, our hearts were broken and our lives were shattered.

This time we left the hospital with a memory box. It was full of Sawyer's things . . .not the things most baby memory boxes might be filled with . . .but with medical wires, sensors, tape . . .a bottle of germ-x, some aquaphor. It also contained these special items . . .Sawyer's hats and a couple of his blankets. I decided to keep them in these ziploc bags to try to preserve the way they smell . . .because they smell exactly like my baby boy. There have been many nights when I have opened them, just for a few moments, and taken out my son's hats and blankets . . .held them close to my face, and breathed his scent deeply, remembering his precious life . . .and thinking of what should have been.

Life after that was a fog for awhile. We didn't know which direction to take. We often felt like giving up, but the courage displayed by our boys as they fought to hold on to their lives was our constant inspiration. After much research and discussion, we found out about a procedure called the Transabdominal Cerclage. In October of 2008, 10 weeks into my third pregnancy, we traveled to the University of Chicago Medical Center, where our hero, Dr. Arthur Haney operated. His surgery was a success, and on April 13 of 2009, our healthy 9 lb daughter, Amelie Jane, was born at 37 weeks gestation. Finally, we left the hospital with our child in our arms. We both cried tears of gratitude as we left the parking garage, knowing that everywhere we went, Amelie would go with us. She is a true miracle, and the joy of our lives. We will never take for granted that we can go and check on her as she sleeps . . .that we can hear her breathing close by, and see how beautiful and amazing she is every single day.

This is Amelie's dog, Billie. We bought him for her from the hospital gift shop a couple of days after she was born. Billie sat and watched over Amelie while she was under the Billiruben lamps. She now plays with him often, and will someday know his story.

I brought Brian's teddy bear and Sawyer's hats and blankets to remind us all that not every parent goes home with their baby, because not every baby goes home. And every baby should. We are here tonight to do our part to try to help that happen. With research, education, and perseverance., more and more is being accomplished every day. I brought Billie to remind us all that miracles really do happen. Because of the dedication of the March of Dimes, both parents and babies who 20 years ago would not have had a chance are now getting to make that trip home . . .but their work is not done. They need our help to keep on supporting them and fighting with them. Thank you all so very much for coming tonight, and for helping to give every baby a fighting chance.

Friday, October 15, 2010

In Memory Of . . .

There are so many babies I am remembering today . . .so many moms . . .so many dads . . .so many grandmas, grandpas, aunts, uncles, cousins, brothers, sisters . . .I couldn't possibly name them all. I would probably end up forgetting someone, completely accidentally, and feel terrible. I also know that since you can only tag 30 people, I can't possibly tag you all in this note. So please know, this is for all of you.

When a child dies, a family is broken. That circle can never be repaired. No matter how much time goes by, no matter how many more children are born into the family, no matter how much joy our lives bring, the sorrow will always be there, in that empty space . . .the part of our circle where those babies belong.

I wish I could tell you that it made sense to me today, but it doesn't. I wish I could tell you it gets easier with time, but it doesn't.

The only encouragement I can offer is this: You will always feel sorrow. You will always feel grief. You will always feel "different." You can never, ever "go back" to the way you used to be. I know maybe this doesn't sound encouraging, but it is.

All of your grief and sorrow, all of the tears you have cried, all of the lonely nights you have sat awake, wishing your child was safe and sound, sleeping in their bed, right where they belong . . .all of it is love. And love is the only thing that matters. I am grateful for those tears, for those aching arms, for those lonely nights, because they remind me of how much I love my boys. I am thankful for every reminder I can get, because they mean that my boys were PRESENT in this world and they MATTER. They will always matter.

So the encouragement is that your children will always live in you. You learn to carry the grief and sorrow along with you. You learn to bear it within your heart, and to share every moment of sorrow with the moments of joy that will arise. For you WILL have joy again. You will live, and you will love. Your children will be a part of every moment of it.

I love and share that love because of my boys. I try to do good in the world so their love can touch the lives of others. I try to remind myself of this and redidicate myself to this mission.

I wish love to each of you today as you remember the babies who should be here with us. I wish you peaceful hearts amidst the grief. I wish you joy, even in the moments of sorrow.

Brian and Sawyer, we love you and we miss you every day. We always will. We are so proud that you are ours, and our lives are better because we knew you. We have been forever changed because each of you were unique, perfect, beautiful miracles . . .and we were blessed to hold you in our arms.

"They say that time in heaven is compared to 'the blink of an eye' for us on this earth. Sometimes it helps me to think of my child running ahead of me through a beautiful field of wildflowers and butterflies; so happy and completely caught up in what he is doing that when he looks behind him, I'll already be there." ~ author unknown

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." ~W. Irving

Wednesday, October 06, 2010

All You Need is Love

Jim and I have talked about Amelie's future. I hope and pray that not only will she not get bullied, but that she will NEVER bully. I pray that she will grow to be a kind, loving person who embraces others, no matter what their differences might be. I pray that she can show others the way through her example of love. I pray that if someone IS mean or cruel to her, she will know that it is a weakness in their life, not her own failure, and she will reach out to them. I hope that she will have the self-confidence I did not . . .that she won't rely on other people for her sense of purpose. I pray that she will walk away and know that she is loved so deeply that it doesn't matter what someone mean might do or say to her. I hope beyond all measure that if it's happening to her, she will tell us . . .and that if it's happening to someone else, she will tell us too.

I know it's a lot to expect, but if we all expected that of ourselves and each other, maybe we really could end the problem of "bullying" once and for all. I, for one, am never going to give up trying. It's easy to say "There will always be bullies," but I refuse to accept that. There doesn't have to be. Children emulate what they see. We must do our part and not be bullies ourselves. Our children are listening when we talk about others. They see how we treat each other. I'm not perfect, so I keep trying. Will you?

And I also want to reiterate what Single Dad Laughing says . . .if anyone out there is feeling like there is no one to turn to . . .please, turn to me. I will be there for you. I will talk to you, I will listen, and I will accept you and love you just as you are. Email me anytime. Don't give up. I promise you that what they're saying is true: IT DOES GET BETTER. It gets so much better. ♥♥♥

Saturday, August 28, 2010

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." ~Washington Irving

Thanks for all the support and love. ♥

Monday, August 23, 2010

I've been trying to find a way to say this all morning, and I really can't think of how . . .so I'll just say that we lost the baby. As my OB said, this has nothing to do with my previous problems, it is simply one of those "unfortunate things" that can happen to any couple. Keep us in your thoughts and prayers as we try to find a way forward from here. ♥