Tips for NICU Parents
January 12, 2013 at 10:52 pm | Posted in Grief, hospital, NICU, normal?, silver lining | 12 CommentsTags: bereavement training, Jake, NICU, Nurses, parents of premature babies, Sawyer, tips
This past week I, along with 2 other mothers, spoke to a group of nurses as part of their bereavement training. The nurses all work at Northside, the hospital where we had all 4 of our children.
This is the 3rd time I have been on the parent panel as part of this course. The purpose of parents speaking is so that we can give feedback about our experiences at the hospital and help the nurses to better understand the needs of the families. I listened to the other women recount their bittersweet experiences. I spoke about mine.
Along with helping the nurses understand the parent’s perspective, we also spoke about ideas for families with babies in the NICU. The other 2 mothers had several suggestions that Evan and I had not thought of while Jake was in the NICU. No one knows ahead of time that they will be a NICU parent. And, NICU parents do not usually have time to google suggestions for being a parent to a very premature baby. However, I am going to share this list just in case you or someone you know finds themselves with a child in the NICU.
- Take pictures. Use your phone, a disposable camera or whatever kind of camera is available to you. I am so thankful that the nurses encouraged us to take pictures.
- Video tape. If it is allowed make video tapes of your baby. I wish Evan and I had video of Jake.
- Pen and journal. Ask the nurses to write something down about your baby during their shift.
- Small stuffed animals. Carry them around so they pick up your scent. Place them in your babies’ isolette.
- Memory metal. Use the metal to make a finger or foot print of your baby.
- Scrapbook. The hospital gave us everything that touched Jake’s body. Evan and I keep all of Jake’s things. We have been working on a special cabinet to keep it all together but it would be great if we could put together a scrapbook as well.
Some hospitals have organizations to help and support NICU parents. The group at Northside is called Parents Partnered for Preemies. Do you have any other ideas to add to this list?
Reality Bites
January 8, 2013 at 10:54 pm | Posted in Death, Grief, mourning, normal? | 9 CommentsTags: child loss, grandparents, grief, holidays, life after loss, new not so normal, Sad, thoughts
Today it has been 1 week since I held my grandfather’s hand as he took his last breaths. He is no longer suffering. The funeral is over. He was 100. His death was not a shock. Death is part of life. I repeat these statements to myself several times a day. So, why do I still feel like I am walking around in an alternate universe?
Evan, the twins and I have returned to work, school and life in general.
People ask “How were your holidays?” I want to scream, my grandfather died on New Years Day. Sawyer died the day after Christmas 3 years ago. I officially hate the holidays!!! However, I instead take a deep breath and respond, “Fine, how were yours?”
My thoughts are scattered. It took me less than 1 day to lose the new insurance card Evan handed to me. I got lost driving somewhere I go almost every week.
I am figuring out another new normal.
The Circle of Life
January 2, 2013 at 4:44 pm | Posted in Grief, life lessons, Love, mourning | 14 CommentsTags: centenarians, child loss, grandparents, grief, holidays, hospice, life after loss, new not so normal

I always knew that I would outlive my grandfather. It is the way that life is supposed to go. I made peace with my feelings about death in 2005. After Jake died, defying the circle of life, I quickly came to terms with my own mortality. I am not going to do anything to speed it up but I know I will die one day. And, I knew the day would come when my grandfather would die. No one lives forever.
He died yesterday. I know that he was 100 and lived a (mostly) beautiful life but the last part of it was so excruciatingly painful for him. I would have given anything to spare him the suffering he endured.
I am so very lucky that I was able to spend so much time with him. The twins got to know him. I believe they will have memories of their wonderful great grandfather.
I am hoping and praying that he is now resting in peace with my grandmother. And maybe, just maybe he will meet and play with his other 2 great grandchildren .
My Ghost of Christmas Past
December 26, 2012 at 12:02 am | Posted in Grief, Love, mourning, normal?, why I write | 21 CommentsTags: child loss, dark days, death of a baby, holidays, Sawyer, unexplainable

Dear Sawyer,
This picture of you looks as if I could just pick you up. My arms ache every time I look at it. I cannot believe I will never hold you again. I should have never let you go that night. If I knew it was the last time I was ever going to hold you or kiss you I would never have put you down on December 25th three years ago. If I were holding you would I have been able to save you? Why did you have to go? Will we ever know? So many questions without any answers.
The rational part of me knows that even if I ever do find out why you died it will not make a difference. You will still be dead. And, I will still be alive. The irrational part of me thinks that if I could just understand your cause of death I could protect you. Change the fact that you are gone. The logical me then takes over again and argues that if we knew the cause then we could test the twins. We could prevent other children from dying. The rational, irrational and logical me might be battling it out forever. None of us will win. We will have all lost.

I hope that I can always remember how it felt to hold you. I want to permanently erase the images of you in the emergency room. Unfortunately, they are burned into my mind. Luckily, there are other pictures of perfect little you. . .

Missing you always and forever. I will look for you in my dreams and hope that I can hold you again one day. I love you to the moon and back.
No words
December 18, 2012 at 11:44 pm | Posted in Grief, life lessons, Love, mourning | 6 CommentsTags: child loss, dark days, family, Gandhi, Newtown, post traumatic stress disorder, tragedy, unexplainable
Every morning since Friday I have woken up hoping that the senseless deaths in Newtown were a horrific nightmare. After Jake’s and Sawyer’s deaths I had similar experiences. The moments before I was fully awake everything seemed alright in the world. And then an instant later it shattered. Reality. And, the world seems as if it is forever broken.
There are so many families left behind. New members of the club. Filled with endless questions. Why? How? Guns? G-d? There are no answers that will bring them back. The 20 children will never grow up. The families will be missing pieces for eternity.
I so wish I had the right words but since I do not, I will again borrow wisdom from Gandhi.

Storms & Seasons Greetings
December 12, 2012 at 12:12 pm | Posted in Grief, life lessons, normal?, silver lining | 10 CommentsTags: baby loss, child loss, dark days, death of a baby, holidays, new not so normal, parenthood, perspective

The dark days of December are always accompanied by holiday parties and cheer. The people of planet earth should be celebrating and happy because as it has already been established not everyone lives on planet my baby died. Last weekend I was visiting planet earth when Evan and I attended his work holiday party. For the most part we fit right in. Three different people asked “how many children do you have?” My response to 2 of them was “we have twins at home.”
I was speaking to a woman who I knew had lost a daughter. I did not know how or if I would bring it up but then she asked the question. I told her about all 4 of our children. I told her about Jake and Sawyer. She told me about her daughter who had died in 1999.
She shared with me that the month of her daughter’s death is still hard for her. I am truly sad that it is difficult but her honesty helped me. The 3 years since Sawyer died seem so long ago in some respects but in others it really does not. There is no plan to get over or through grief. It is a journey. I know exactly when the storms began but I am not sure if they will ever end.
A light in the darkness
December 8, 2012 at 9:46 pm | Posted in Grief, Love | 3 CommentsTags: Candle Lighting, child loss, Compassionate Friends, dark days, death of a baby, grief, hope, new not so normal, quotes, ways to honor the memory of your child

The Compassionate Friends is an organization which was formed to support families after a child has died. Its founder, Simon Stephens, states that the mission is “about transforming the pain of grief into the elixir of hope. It takes people out of the isolation society imposes on the bereaved and lets them express their grief naturally. With the shedding of tears, healing comes. And the newly bereaved get to see people who have survived and are learning to live and love again.”
The Compassionate Friends created a worldwide event to unite “family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause.” December 9th at 7 pm will mark the 16th Worldwide Candle Lighting.
Doctors & Dreams
December 2, 2012 at 9:48 pm | Posted in after death?, Grief, Love, normal? | 10 CommentsTags: baby loss, child loss, dark days, death of a baby, new not so normal, perspective, quotes, Sad, Sawyer, unexplainable

Dear Sawyer,
Three years ago we had your 2 week check up with the pediatrician. You did fantastic. You were gaining weight. You were eating. You were sleeping. All seemed to be going well. Was there something that we missed?
The doctor told us that you were perfect. We even scheduled your 2 month check up in January of 2010. As you know, we did not make it to that appointment.
I try not to imagine what you would be like as a 3-year-old. I know that I should just mourn the loss of you as a baby. It only makes it more painful to grieve the losses of all the other stages you sadly never reached. Good night baby boy. I love you. I miss you. As always, I will look for you in my dreams.

Stuck
November 26, 2012 at 10:48 pm | Posted in Death, Grief, life lessons, normal? | 17 CommentsTags: child loss, dark days, death of a baby, grief, Jake, miscarriage, new not so normal, perspective, quotes, Sad, Sawyer, thoughts
Thank you Brooke from by the brooke for writing about the book, Tiny Beautiful Things: Advice on Love and Life from Dear Sugar. The book is written by Cheryl Strayed, who was formerly the anonymous online advice columnist, Dear Sugar. The book is a collection of letters written to Dear Sugar and her responses.
One letter is from a bereaved mother, Stuck. Stuck’s baby died. I want to share the wisdom that Sugar so powerfully offers. The following is part of the advice that Sugar wrote to her:
Dear Stuck,
I’m so sorry that your baby girl died. So terribly sorry. I can feel your suffering vibrating right through my computer screen. This is to be expected. It is as it should be. Though we live in a time and place and culture that tries to tell us otherwise, suffering is what happens when truly horrible things happen to us.
Don’t listen to those people who suggest you should be “over” your daughter’s death by now. The people who squawk the loudest about such things have almost never had to get over anything. Or at least not anything that was genuinely mind-fuckingly, soul-crushingly life altering. Some of those people believe they are being helpful by minimizing your pain. Others are scared of the intensity of your loss and so they use their words to push your grief away. Many of those people love you and are worthy of your love, but they are not the people who will be helpful to you when it comes to healing the pain of your daughter’s death.
They live on Planet Earth. You live on Planet My Baby Died.
It seems to me that you feel like you’re all alone there. You aren’t. There are women reading this right now who have tears in their eyes. There are women who have spent their days chanting daughter, daughter or son, son silently to themselves. Women who have been privately tormented about the things they did or didn’t do that they fear caused the death of their babies. You need to find those women. They’re your tribe.
I know because I’ve lived on a few planets that aren’t Planet Earth myself […]
This is how you get unstuck, Stuck. You reach. Not so you can walk away from the daughter you loved, but so you can live the life that is yours — the one that includes the sad loss of your daughter, but is not arrested by it. The one that eventually leads you to a place in which you not only grieve her, but also feel lucky to have had the privilege of loving her. That place of true healing is a fierce place. It’s a giant place. It’s a place of monstrous beauty and endless dark and glimmering light. And you have to work really, really, really hard to get there, but you can do it. […]
You will never stop loving your daughter. You will never forget her. You will always know her name. But she will always be dead. Nobody can intervene and make that right and nobody will. Nobody can take it back with silence or push it away with words. Nobody will protect you from your suffering. You can’t cry it away or eat it away or starve it away or walk it away or punch it away or even therapy it away. It’s just there, and you have to survive it. You have to endure it. You have to live through it and love it and move on and be better for it and run as far as you can in the direction of your best and happiest dreams across the bridge that was built by your own desire to heal. Therapists and friends and other people who live on Planet My Baby Died can help you along the way, but the healing–the genuine healing, the actual real deal down-on-your-knees-in-the-mud-change–is entirely and absolutely up to you. […]
Yours,
Sugar
I have been living on Planet My Baby Died for 7 years. I do not know if there is a separate Planet for when a second child dies. If so, I have been on that Planet for almost 3 years. Either way, here I am trying to live.
Thankful 2012
November 22, 2012 at 7:28 am | Posted in Grief, life lessons, Love, normal? | 8 CommentsTags: child loss, dark days, death of a baby, gratitude, holidays, new not so normal, perspective, quotes
I am forever thankful for the people who supported and continue to support Evan and I through the darkest times in our lives. I have not officially thanked you all but please know that you have our eternal gratitude. Hope that you all have a very happy Thanksgiving!
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