Hoping for Healthier Babies

April 28, 2014 at 8:28 pm | Posted in Grief, Jake, life lessons, Sawyer | 5 Comments
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Thank you to all of our friends and family for supporting Jake’s Journey and Sawyer’s Strides in the 2014 March of Dimes “March for Babies!”   We appreciate you all so much.  Special thanks to our super talented sister-in-law for designing a new logo for the t-shirts.

Jake and Sawyer‘s deaths were due to circumstances beyond our control. I cannot describe in words how horribly helpless it feels as a parent to watch your child die and not be able to do a thing to prevent it.   The March of Dimes gives us a chance to do something to hopefully prevent another child from dying.  Maybe, just maybe, another family will be spared from having to try to figure out how to live in this world without their child/children.

Evan was the chairperson of the North Atlanta walk this year.   As the twins explained “their daddy got to the park early to put out the chairs!”  Although he did not actually put out any chairs, we are so proud of him for all he did and continues to do in the fight for healthier babies.

Thank you again for supporting our team this year and in past years.   We are grateful for your amazing kindness and generosity – we could not make it through this journey alone.

Hoping for Milk

April 8, 2014 at 9:48 am | Posted in after death?, Grief, life after loss, Love | 8 Comments
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Some days it is harder than others to find hope.

After Jake was born at 26 weeks with hydrops, I hoped he would be among the 30% of babies who survive these enormous obstacles.  There was no miracle.

The horrible night we brought Sawyer to the emergency room, I hoped for the miracle that it would all be an awful mistake.  There was no miracle.

I hoped for a miracle that would cure the cancer that Evan’s mom had or at least give her back the life she had. There was no miracle.

On Friday a close family friend lost his valiant battle with brain cancer.  In case I have not mentioned it before I hate cancer!!  His family along with all of us who loved him hoped he would win this battle.  He did not.

When there is no more hope for our loved ones to remain with us we often shift to hoping to prevent that anyone else should have to go through this horrible journey.  So, his family has formed a team, Everybody Needs Milk, in the Race for Hope DC.  I hope that one day soon a cure for cancer is found.

This is a telephone pole at the end of my neighborhood running route.   It is a reminder to me that there is hope everywhere (just sometimes we have to look for it harder than others).

Hope

Pathology is No Place for Politics

March 24, 2014 at 8:18 pm | Posted in Grief, venting | 6 Comments
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I read an article recently about a young mother losing a child that presented a whole new take on a sad situation.

The death of any child is heart breaking, and a horrible situation no parent should have to suffer. In this case, a poor 16-year-old in Mississippi lost her baby at 36 weeks to what was most likely the frighteningly all too common situation of where the umbilical cord gets tangled around the baby and causes death. The teenager had to deliver her stillborn child and figure out how to deal with such a sad and horrid situation that would leave any mom filled with guilt (even though there was nothing she could have done to prevent it). It must have been even harder to be only 16 and having to deal with one of life’s greatest tragedies.

But then, for this girl, things got exponentially worse. Apparently in Mississippi at the time there was a pathologist who has quite a reputation – for being politically motivated and having an agenda. When he found evidence that the girl in question had used drugs during her pregnancy, the pathologist concluded that the drugs had led to the baby’s death. And he, along with local law enforcement (which also has an agenda to reduce women’s reproductive rights) decided to charge this 16-year-old girl with murdering her child. They alleged that her use of drugs was a “depraved heart” killing of her child.

They did all this despite the fact that no medical facts support that conclusion. They ignored the science that points to the cord as the cause of death and ignored the medical facts that show that while drug use is certainly a terrible idea for a pregnant woman, it does not cause death of the child (and not in this case).

For six years now this now 24-year-old from an impoverished background with drug issues has not only had to deal with the death of her child, she has had to deal with being accused of killing her child, of having a “depraved heart,” and with the very real fear of being tried and found guilty of murder by a Mississippi jury.

I just cannot imagine.

When Sawyer died, since his heart stopped at home, investigators questioned us in the ER.  Then they followed Evan and I home from the hospital to view the scene and talk more about what happened. They quickly concluded that what ever exactly happened to Sawyer, it was biological, not something that anyone did to him and not something that could have been prevented by some action we could have taken (or not taken) at home.

We knew that, logically, but it was also helpful to hear that from those who looked into it. Further, the pediatric pathologist who examined Sawyer to try to determine the cause of death also ruled out any external causes, and ultimately focused on his heart stopping, likely due to a genetic, undiagnosed arrhythmia. (It’s still a working theory, but it’s the best any doctor can say at this point.)  The pathologist was compassionate and helpful in trying to get us not to blame ourselves for Sawyer’s death. She explained things so we could understand them, and she spent extra time meeting with us, emailing with us, and even went above and beyond to help us get Sawyer’s DNA in a study at the Mayo Clinic looking for certain arrhythmias that she and some other scientists believe may account for many of the SIDS and SUIDS deaths that still occur far too often. She also happens to be quoted in the article — taking a sane, rational, scientific-supported view of the case, unlike the Mississippi pathologist out to “get” this girl.

I cannot fathom how this girl must feel having had not help and comfort from investigators and a pathologist, but blame, condemnation and being charged with “depraved heart murder.” It must be like a second sledgehammer to her own heart. First, her baby dies. That is heart-crushing on its own. Then, she is accused of killing her child and must fight for her own freedom and future. That guilt and feat must be not just heart-crushing but soul-smashing. For a sixteen-year-old girl from poverty probably few of us can truly comprehend.

I am not excusing her drug use. As a mom, protecting our children is of the utmost importance. I’d never do something that might harm my children. She made that mistake. But I cannot judge her for that, because I do not know her or her true circumstances, or why she did that.

What I do know is that science says she did not kill her child. What I also CAN understand is the depths of despair and guilt a mom faces when her child dies. No woman should go thru that. No girl should face that, let along without care and support of those around her. To blame her for her child’s death here, to prosecute her for murder, to claim to the world she has a “depraved heart,” must be causing her unimaginable pain.

I can barely make it though losing Jake and Sawyer even with being told by everyone that I did everything right, but that some things cannot be fixed or prevented. Without that love, caring and support, and in the face of accusations of killing my own child (no matter how wrong-headed, illogical, unsupported by science and politically driven they might clearly be) I don’t know how I would be able to go on.

 

The Other Baby

September 18, 2013 at 9:44 am | Posted in hospital, Jake, life after loss, NICU | 13 Comments
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“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.

So glad to see you September

September 2, 2013 at 10:56 pm | Posted in after death?, Grief, Jake, life after loss | 8 Comments
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quote - breathe

August is over and Evan came up with a brilliant plan to get through the last few days of it.  The last week of August includes Jake’s deathiversary, my birthday and my grandfather’s (there are a few family wedding anniversaries in there too).

Evan planned a trip and we went away.  My parents were able to join us.  We usually do go away Labor Day weekend to see my grandfather for his birthday.  Our whole family for many Labor Day weekends has come together to celebrate his birthday.  I know that I am so lucky to have spent so many birthdays with my amazing grandfather.  However, this year there was no trip to see him to look forward to, so I had to find other ways to distract myself.

Evan’s plan worked like a charm and these 2 helped as well. . .

September 2013

When the Walls Come Tumbling Down

August 26, 2013 at 6:14 pm | Posted in Grief, Jake, life after loss, Love | 4 Comments
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As I wrote about here, the house where I was pregnant with Jake was sold a few months ago.  We had a room for Jake in that house but he never came home to it.  There was a time after Jake died that I had such anger towards that room.  I wanted to renovate it, destroy it or at least move far, far away from it.

My anger was not rational but it seemed very real to me at the time.  Along with denial, bargaining, depression and acceptance;  anger is one of Elisabeth Kübler Ross’ 5 stages of grief.  I guess I did not have any one to be angry with so why not get mad at a room painted baby blue?  So, when we sold that house we knew that it would most likely be torn down.  The other day, it looked like this:

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The next day when I drove by, all that was left was this:

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It is just Jake’s room.

Now the whole house is gone, but Jake will never be forgotten.  We love you Jake.

One Day at a Time

August 18, 2013 at 10:22 pm | Posted in Grief, Jake, life after loss, Love | 3 Comments
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quote - several days

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.

quote - The-best-thing-about-the-future-is-that-it-comes-only-one-day-at-a-time

Jake

August 14, 2013 at 12:14 am | Posted in Grief, Jake, life lessons, Love | 13 Comments
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Dear Jake,
Today you would/should have been 8.  You are not.  I am still so very thankful that I got to meet you.  I just wish we could have kept you for longer.  Below are the words that your dad wrote to you 8 years ago.  They are just as true today.

We love you Jake.

You are our sunshine.

You are such a courageous and strong fighter, and we are so proud of you.

Jake, you are a miracle, and we thank you for choosing us to be your parents.

You are so wise for someone so young and so small.  You knew when you had to come into this world Jake, and you knew when you had to leave us to be in a better place.

You are and were the perfect son for us.

Jake, please know that we felt all the love you gave to us during your time here.

We are sad that we could only spend such a short time with you, but we are so glad and thankful for every minute of it.

It is amazing how we could come to love you so immediately and so completely even though we were just getting to know each other.

Then again, we feel like we have known you all of our lives, and you will be in our hearts forever and beyond.

Jake, we also know that you are at peace and that you are being watched over by all of our loved ones who also watch over all of us from above.

Thank you, Jake.

Thank you for coming to us.

Thank you for choosing us.

Thank you for loving us and letting us love you with all of our hearts.

We’ll see you every night playing up with the moon and the stars.

I miss you every. single. day.  Some days are harder than others.  I love you.

Balloons

July 2, 2013 at 11:32 pm | Posted in after death?, Jake, life after loss, Love, Sawyer | 6 Comments
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quote - balloon - AA Milne

Whenever our daughter is given a balloon she wants to let it go and send it to Jake and Sawyer.   The balloons are not always just for Jake and Sawyer.  She also sends them to Evan’s mom (Mom Mom), my grandfather (Grandpoppy) and other members of our family who have died. I think it started with the balloon launch at the end of the Walk to Remember.  However, it has continued after birthday parties and school celebrations.  She usually wants to come home with the balloon and stand in the driveway.

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Next, she will find the perfect place to release the balloon so that it does not get caught in the trees.  Sometimes, she will try to attach a note to the balloon.  Other times, she will say a few words or give a few kisses to send with the balloon.

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When she has finally determined that the conditions for the balloon release are as good as they are going to get, she lets it go.

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We watch it for as long as we can.  She asks me if I really think that they will get her balloon.  I always say, “yes.”

Tonight at bedtime the twins were discussing the balloons that she sends.  They debated the obstacles the balloon could encounter – tree branches, the wind, the lack of wind, etc.  What would happen when the one balloon finally arrived?  Would Jake or Sawyer hold it?

I chimed in that it did not really matter who held it.  They could all look at the balloon and know that we are thinking about them.

Silence

March 30, 2013 at 10:03 pm | Posted in Grief, life after loss, Love, normal? | 15 Comments
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quote - everyone has something

There are times when I am at a loss for words.  People talk to me.  And, I can not respond.  At all.  Here are a few examples:

  1. At work the other day someone asked my opinion about his home computer.  I said my answer depends on who uses the computer.  He went on to talk about his wife, his school age daughter and 5-year-old twins.  I said I have 5-year-old twins too.  Once the words came out of my mouth I wanted to take them back.  I knew his next question before he asked it.

“Are the twins your only 2?”

“They are our only 2 at home.”

“Oh, so does your husband have kids from a previous marriage?”

“No.”

“Do you have kids from a previous marriage?”

“No.”

“Then what?”

Silence.  More silence.

  1. I am at the doctor.  A nurse notices the scar tissue from my c-sections.

She asks “How old is your youngest child?”

I do not respond at all.

She tries again,”When was your last c-section?”

Tears silently stream down my face as I say “November 17, 2009.”

The nurse in response to my tears, “You must really not feel well.”

I try to respond but no words come out of my mouth.

  1. I am on a very bumpy flight with the twins (and without Evan).  I am turning green.

An extremely kind stewardess offers me a drink of water and then proceeds to tell me about another mother flying alone with her 4 kids.

She is just trying to make me feel better.

After the stewardess finishes telling us about the air sick mother of 4, the twins start to whisper to each other.

Then they start to loudly whisper to me.  “Tell her about Jake and Sawyer.”

I do not say anything.  I listen as the twins tell the poor sweet stewardess about their dead brothers.

Sometimes I wish I really did know Scotty and he could beam me up.

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