Tiny Beautiful Things: Advice on Love and Life from Dear Sugar
October 14, 2013 at 10:26 pm | Posted in life lessons, Love | 5 CommentsTags: book review, child loss, grief, hope, life after loss, new not so normal, thoughts, Tiny Beautiful Things: Advice on Love and Life from Dear Sugar
The book, Tiny Beautiful Things: Advice on Love and Life, is a compilation of advice columns by Dear Sugar. It 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. Dear Sugar writes advice to questions about love, life, death and everything in between.
I previously wrote about one of Dear Sugar’s advice columns to Stuck. Stuck is a bereaved mother. Stuck’s baby died. Sugar offers some very powerful advice on how to get unstuck. In another post, in response to a letter from Living Dead Dad, Sugar wisely writes:
“I don’t know how you go on without your son, sweet pea. I only know that you do. And you have. And you will.”
“Your boy is dead, but he will continue to live within you. Your love and grief will be unending, but it will also shift in shape. There are things about your son’s life and your own that you can’t understand now. There are things you will understand in one year, and in ten years, and twenty.”
There was a time after Jake and then after Sawyer’s death that I could not concentrate long enough to finish a sentence let alone an entire book. Now, I am able to concentrate while I read, although I have to admit most of my “reading” is actually listening to books on CD in the car. I am so glad that I stumbled back upon the book Tiny Beautiful Things and listened to it in its’ entirety.
Spreading Awareness
October 6, 2013 at 9:14 pm | Posted in life after loss, Love, silver lining, why I write | 9 CommentsTags: Atlanta 2 Day Walk for Breast Cancer, Atlanta Walk to Remember, baby loss, child loss, death of a baby, hope, Jake, March of Dimes, new not so normal, ways to honor the memory of your child
This past weekend, I walked in one day of the Atlanta 2-Day Walk for Breast Cancer and in the Atlanta Walk to Remember.
In addition to walking, Evan has been talking as well. Last week he went to Capitol Hill with a group from the March of Dimes. They spoke to members of Congress about the importance of newborn screening and funding prematurity studies.
This week, Evan spoke at the Atlanta Walk to Remember. Below is his speech:
“Dad and Father”
I am the father of four children,
but I am “Dad” to only two kids.
Our six-year-old twins call me “Dad” or “Daddy”
– or sometimes other silly things, or things I won’t mention here.
Our first child, Jake, never left the hospital
and lived only 2 weeks.
He was born 14 weeks early
and with other ultimately unsolvable medical complications.
Our fourth child, Sawyer, was born happy and healthy
and came home with us.
But six weeks later, with no warning,
and for no reason that has yet been fully figured out,
his heart stopped working.
Neither Jake nor Sawyer ever got to call me anything.
My family and I grieve the deaths and loss of our boys,
as you all grieve the loss of your children and little loved-ones.
As their father, I grieve the loss of Jake and Sawyer’s childhoods,
the big moments that they were supposed to have but never will.
I grieve the loss of their chance to grow up, to flourish,
to become teenagers, young men, husbands and “Dads” themselves.
I grieve the lost ball games and trips and adventures we’ll never have.
I grieve all the missed hugs and high-fives.
I grieve even the cranky wake-ups and bedtime fits we know so well from our twins,
but never got to experience with Jake or Sawyer.
I grieve all the truly heart-warming bedtime snuggles
that will never happen with Jake or Sawyer.
Beyond all those missed tender moments,
I also grieve the loss of my belief that horrible things won’t happen to me or my loved ones.
I am all too aware now that they can happen to anyone – as they have happened to all of us.
It’s all I can do most of the time
to just hope nothing like losing Jake and Sawyer ever happens again.
As a father, I also grieve the loss of my once unshakable belief
that I could always protect my wife Lanie and all our children
from such terrible pain and anguish; that I can “fix” their problems;
that I can always make everything all better.
I know that I cannot make Jake or Sawyer all better or bring them back.
I’m not sure that grief is something a father can ever overcome.
Of course, I have learned that you do not overcome or get past grief.
You just go through it.
I hate that my family has to go through it too,
but thank heavens I have an incredible wife and wonderful kids
to travel along with me as I go down that path.
So I guess I will always grieve the loss of never being called “Dad” –
not even once – by Jake or Sawyer.
But that doesn’t mean I am not their father.
I am and always will be a proud father of all my kids,
no matter what they call me
or what they were never able to call me.
And, I am so very proud of Jake, Sawyer and the twins’ dad and father.
Weekend Walks
October 4, 2013 at 6:22 pm | Posted in life lessons, Love | 6 CommentsTags: Atlanta 2 Day Walk for Breast Cancer, Atlanta Walk to Remember, breast cancer, child loss, death of a baby, hope, life after loss, Pregnancy and Infant Loss Awareness month, thoughts, ways to honor the memory of your child
Do you know that along with Breast Cancer Awareness month that October is also Pregnancy and Infant Loss Awareness month?
There are so very many facts that I have had to accept are out of my control. At the top of the list are the facts that Jake and Sawyer are dead.
However, I am still here. I am going to do my best to bring awareness to Pregnancy and Infant Loss along with Breast Cancer. So, this weekend I am going to walk in the Atlanta 2 Day Walk for Breast Cancer and the Atlanta Walk to Remember. I will let you know how they go.
Hope that you all have a great weekend!
The Other Baby
September 18, 2013 at 9:44 am | Posted in hospital, Jake, life after loss, NICU | 13 CommentsTags: #DPchallenge, baby loss, death of a baby, hope, hospital, life after loss, new not so normal, NICU, thoughts, writing challenge
“We can leave whenever you want to go.” Evan said for the tenth time.
“Not yet, I can wait a little longer.” I lied.
I was hot and I felt like the walls where closing in on me. So, not even 5 minutes later I ran out of the hospital. Evan followed me.
It was the first time we had been back to the hospital since the horrible day that Jake had died.
It started earlier that day. Evan and I were both home. Our fog of grief was interrupted by the ringing of the phone. He answered. I heard him say, “I am her husband whatever you need to talk to her about you can can tell me.” I could not hear the response on the other end of the call. Evan’s sad voice spoke once more, “Do you realize that our only child died last week and his funeral was just days ago?”.
Evan appeared with the phone in front of me. “It is a nurse from the hospital. She needs to speak to you.”
The one and only thing that entered my mind was that this nurse was calling to tell me that Jake was alive!! This has all been a terrible mistake. Evan and I are about to wake up from this nightmare. Jake is really waiting for us in the hospital. I grabbed the phone from Evan.
“There has been a mix up at the hospital.” said the nurse.
My mind and my heart were now both racing so fast that I could not sit still. “Okay.” was all I could manage to say in response.
“The milk that you had pumped for Jake was given to another baby.”
My mind and heart stopped racing. What!? I had been pumping milk since the day that Jake was born in the hopes that he would one day drink it. Evan would take the bottles of milk, label them and put them into this high security refrigerator in the NICU.
When Jake died we asked if we could donate the milk. Perhaps at least my milk could help another baby and help us to make some sense over Jake’s death. We were told that we could not donate the milk because I had been given pain medication after my C-section. Another loss.
Evan asked if we needed to come dispose of the milk. The nurses assured us that we did not have to worry about it – they would get rid of the milk.
Except, they did not. The milk was mistakenly given to another baby in the NICU. Now the parents of the other baby were understandably upset.
The nurse was calling because they needed me to come in for a blood test to verify that I was not on any illegal drugs when I pumped the milk. The other parents needed to know that the milk that their NICU baby drank was ok.
“Of course, my blood is ok.” I whispered as I realized that this call was not going to bring Jake back to us. Evan held my hand.
“I will come right now to take the blood test. I know that if we were those other parents we would want/need to know.” I hung up the phone.
Evan drove us the 3 miles back to the hospital where we had left Jake’s body just days before. A nurse met us out front and led us to a room far from the regular labor and delivery and the NICU. We were far, far away from any happy parents with their newborns. The hospital walls seemed to close in on us.
We waited in that room for the blood test. We waited for 30 minutes. “We can leave whenever you want to go.” Evan said for the first time. And, then we waited 30 more minutes. He repeated over and over that we could leave.
After 90 minutes I could not take it anymore. I ran out of the room. I did not ever take the blood test. I knew that there was nothing in my milk that Jake would not have been given had he ever drank it. So, I thought the other baby would be ok. Or, at least that if the baby was not ok it would not be from my milk.
I will never know for sure but every day I hope and pray that the other baby is alive, happy and healthy.
9/11, The End of the World as We Know it: Anniversaries (repost again)
September 10, 2013 at 5:46 pm | Posted in Grief, life after loss | 2 CommentsTags: 9/11, anniversaries, dark days, hope, life after loss, new not so normal, perspective, thoughts, tragedy, unexplainable
The tragedy of 9/11 and its’ anniversary are kinds of grief. It is of course, an enormous source of grief for all of the families and friends who lost loved ones. It is also the kind of grief in which you realize that the world as you knew it will not ever be the same.
Hurricane Katrina hit New Orleans the week that Jake passed away. A very close friend of mine took her 5-year-old son in for his check up and the pediatrician found a rare heart condition. My grandmother had died. I felt like the world was coming to an end. So, I asked the rabbi who presided at Jake’s funeral about the possibility that the world was ending. He replied with an analogy. He said that it is like when you decide you are going to buy a certain kind of car. Once you make the decision you start seeing the car every where. So, my take away from his explanation was now that I was grieving I would start to see grieving every where. . . Turns out you don’t have to look too far for grief in this world. The record 7.0-magnitude earthquake hit Haiti shortly after Sawyer died.
I know that 9/11, where close to 3,000 people died; Hurricane Katrina, where 1,500-1,700 people died; and the earthquake in Haiti, where almost 230,000 people died are tremendous losses compared to the death of two babies. But, those babies were mine. And, my world will never be the same as it was before they had died.
There is not a contest for who has the most grief. I am not trying to compare my losses to these catastrophic tragedies. There are not any winners here. In grief we have all lost. However, there is still the next day and the day after that. And one day, there is a point where we will realize that our loved ones are dead but we are still alive.
I posted the above last year at this time. On the anniversary of 9/11 and every day, my heart, prayers and thoughts go out to not only the victims but to those who they left behind in this world.
One Day at a Time
August 18, 2013 at 10:22 pm | Posted in Grief, Jake, life after loss, Love | 3 CommentsTags: baby loss, birthday, dark days, death of a baby, hope, Jake, life after loss, new not so normal, perspective, thoughts
Thank you so much for the thoughts and prayers for us and Jake on his birthday.
We are continuing to ride on the August roller coaster of happy and sad days. This weekend had a happy day. Evan‘s birthday. I remember in 2005, Jake was a few days old and I was still in the hospital. The only thing Evan got for his birthday that year was a shower. Life is no longer minute to minute like it was in 2005. However, even today if I think too much about Jake’s birth day and death day, it seems like August is so very dark.
I remind myself not to imagine the 8-year-old Jake. There is no point in grieving over the little boy who never was but somehow I can not stop myself at times. I catch my mind as it wanders to what color his eyes would have been. . .
I remind myself to take it day by day.
Hearts
July 26, 2013 at 9:56 am | Posted in Grief, normal?, Sawyer, twins | 6 CommentsTags: child loss, death of a baby, hope, life after loss, new not so normal, unexplainable
This week the twins had their check up with the pediatric cardiologist. They were both rock stars during the EKG. They both have innocent heart murmurs but otherwise, everything is fine. Their hearts are normal. We will continue regular activity and come back for our next check up.
These are the results that I want to hear. I want both the twins to be healthy and happy. I try so hard to stifle voice that wants to scream, “But, Sawyer was healthy and happy too, until he wasn’t and then he was dead!!” I know that I cannot wrap the twins up in bubble wrap.
The fact that we still do not know why Sawyer died is something I do not let myself think about very often. I have to tuck it away so that it does not consume me. However, during the twin’s cardiologist appointment we need to talk about it. The doctor asked me if there were any updates from the Mayo clinic. No, no updates. We still know that Sawyer had a coarctation of his aorta but it was not narrow enough to cause his death.
I know that there is a very good chance that we will never know the cause of Sawyer’s death. I have accepted this fact but I still do not like it at all.
Kindness Campaign
July 20, 2013 at 10:18 pm | Posted in Jake, life lessons, Love, Sawyer | 1 CommentTags: baby loss, child loss, death of a baby, hope, kindness, life after loss, Mattie Stepanek, Method Baby Products, new not so normal, peace, thoughts, ways to honor the memory of your child
At the age of three, Mattie Stepanek started to write poetry to cope with the death of his older brother. Mattie and his brother suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy. A few of his books are Heartsongs and Hope Through Heartsongs. Mattie died a month before his 14th birthday. His sister and two brothers also died from the disease during early childhood. His mother has the adult form, diagnosed only after all four of her children were born.
Mattie’s mother, Jeni, continues to spread Mattie’s message of peace and hope. Her strength and courage is remarkable. In honor of Mattie’s birthday (July 17th) and death day (June 22nd), Jeni has held Peace and Kindness Campaigns. Above is a slideshow of flyers used for the Kindness Campaign this summer.
Speaking of kindness, a gigantic thank you to Sara, my cousin. She wrote to Method after reading my last post. Method’s customer service could not find any useable soap but they wrote back a really nice response. Thank you again Sara!
Perfect
July 8, 2013 at 10:44 pm | Posted in Grief, Jake, life lessons, Love | 5 CommentsTags: child loss, death of a baby, Down syndrome, gratitude, hope, life after loss, new not so normal, perspective, thoughts, trisomy 21
In May of 2005, Evan and I had the nuchal screening of our first child. We were told that there was a 1 in 5 chance that our baby had trisomy 21, Down Syndrome. Friends told us their tales of false positives with the nuchal screening but after a follow-up test it turned out that we were the 1. The day that we got the results Evan had an awful migraine. He went to bed. I cried on the couch with our dogs.
I knew that I would continue the pregnancy. Evan was not so sure because he needed to know more about Down Syndrome. He questioned his ability to parent a child with disabilities.
We recently watched Perfect. Have you seen it? It is a segment on ESPN’s show E:60 about a father and his down syndrome daughter. Heath White, a successful runner and businessman, wanted perfection. Down Syndrome was not part of his plan. However, his daughter Paisley changed his mind and heart. He wanted to tell his story to the world. He became an advocate for Down Syndrome children. Heath decided to run with Paisley. He pushed her in a stroller for a total of 321 miles. The number is significant because Down Syndrome is an extra (a 3rd) copy of the 21st chromosome.
Heath White spoke about grieving once he found out Paisley’s diagnosis. Evan and I also grieved that day in May, 2005. Although, looking back now it was just a preview of all the tears to come. Perhaps all parents of Down Syndrome children grieve the loss of the “perfect” life they hoped for their child. However, Heath learned from Paisley the true meaning of “perfection”.
We never had the chance to raise our Down Syndrome child.
Traveling with the Twins
June 30, 2013 at 9:38 pm | Posted in Grief, Jake, life after loss, Sawyer | 6 CommentsTags: child loss, death of a baby, grief, hope, life after loss, new not so normal, perspective, signs, thoughts, travel
Most of this month we have been away. The first few weeks were work trips mixed with family and friends. The last part of the month we were away for fun. I used to travel all the time. It is hard to travel with small children but if I am honest with myself there is another reason I like to stick close to home.
I do not like to be away from the cemetery. I know that Jake and Sawyer are not really there but I still feel a need to go there. If nothing else to make sure that all is ok. I no longer go to the cemetery every day but I do not like the idea that I am not able to visit. I felt better about being away for so long because I knew that others would be there to check on them.
The trips were all good. There were some meltdowns and a taxi ride where not one but BOTH of the twins got sick. The taxi driver pulled over each time and we paid for him to get his car cleaned. . . However, we had fun. It was good to see family and friends.
I have written here and here that I do not know where exactly Jake and Sawyer are, except that they are in our hearts. No matter where we travel they come with us. There were times that the twins collected stones to bring to Jake and Sawyer. And, there were little signs that I like to believe Jake and Sawyer sent to us.
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A Mourning Mom 