Many ways to mourn
April 2, 2014 at 10:08 pm | Posted in Grief, life after loss, Love, mourning | 5 CommentsTags: baby loss, death of a baby, new not so normal, parenthood
The other day a friend sent me an article about a mother who built a sandbox on her infant sons’ grave. The sandbox is to give her living 3-year-old son a way to “play” with his baby brother. It is a very creative idea which gives her son a way to mourn as well as bond with the brother he will never know.
My friend wrote in the email that the article made her smile. It makes me smile too.
Pathology is No Place for Politics
March 24, 2014 at 8:18 pm | Posted in Grief, venting | 6 CommentsTags: baby loss, child loss, death of a baby, grief, life after loss, pathology, perspective, politics, thoughts, unexplainable
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.
No worries (I wish. . .)
March 16, 2014 at 9:28 pm | Posted in Grief, Sawyer, twins, why I write | 10 CommentsTags: baby loss, child loss, dark days, death of a baby, grief, hope, new not so normal, parenthood, perspective, thoughts
If your problem has a solution then…why worry about it? If your problem doesn’t have solution then…why worry about it? – Chinese Proverb
In theory I think this makes sense and I agree with the proverb, but I have a problem: I think that worrying is in my DNA.
Everyone at our house is feeling fine now but last week that was not the case. Evan and one of the twins were sick. It is part of life – everyone gets sick. But, I do not like it one bit! I try very hard to rely on the rational part of my brain but the irrational part of me always seems to take over. I am transported back to the days and nights before Sawyer died. Was there something going on? Was he sick in some way? What did I miss? How could he be seemingly perfect one moment and then dead the next?
I know that the twins are not Sawyer. They are bigger. They are stronger. They can tell me when something is wrong (and usually can specifically detail what is wrong too!). However, I cannot help but second guess myself. I cannot help but worry about what we could have done differently, what might have prevented Sawyer from dying that night, how we might have taken a different action or course and he would still be here with us today. I also know that even if we did miraculously figure out the cause of Sawyer’s death it would not change the fact that he is dead. Resurrection is not our reality. Of course, I cannot change that now, and of all things, I logically know I should not worry about things I cannot change. And yet, those are the things that seem to draw out my worries the most.
Helping with Homework
March 6, 2014 at 10:14 pm | Posted in Grief, Jake, Love, Sawyer | 12 CommentsTags: child loss, death of a baby, life after loss, new not so normal, perspective, siblings
Today’s 1st grade homework assignment for one of the twins was about cultural diversity. The questions asked about backgrounds, customs and families. I was helping her with the assignment. We discussed the questions and her answers. “Where are you from?” Where were you born?” She quickly answered and wrote down, “Atlanta, Georgia.” All was going smoothly until, we got to the question asking, “How many brothers and sisters do you have?”
I have written before about being asked “How many children do you have?” “How many brothers and sisters do you have?” is the bereaved sibling’s version of this question. They are both such common and polite questions but the answers for some of us are so complicated. When people ask me how many children I have these days I usually say something like “I have 2 children at home.” I then try to change the subject. Or, the other day I caught myself saying “excuse me for a moment” and I left the conversation all together. I always remember Jake and Sawyer but I do not always talk about them. But maybe it does not have to be so difficult.
At first she did not immediately answer the question “How many brothers and sisters do you have?” Instead, she looked at me thoughtfully and asked, “Mama, how many brothers do I have?” Before I could say anything she said “I know!!” and she began to write . . .
When she finished writing she went over to her one brother and gave him a hug. And, then I hugged them both.
How to Remember Your Child
February 28, 2014 at 1:00 pm | Posted in Grief, Jake, life after loss, Sawyer | 6 CommentsTags: child loss, death of a child, love, ways to honor the memory of your child
I will always remember Jake and Sawyer. How they looked. How they smelled. Their sounds, and the touch of their skin.
Over the years since Jake and then Sawyer have died, we’ve always looked for ways to remember them by trying to build more memories of them. Maybe it is because we only had weeks with each of them. Maybe it is because it is a way to keep them a more active parts of our lives. Maybe it is because that is what we do when we loved ones are no longer present in our lives.
We’ve done things that have made sense to us to remember Jake and Sawyer. I’ve also come across suggestions (some of which we have taken, some of which we haven’t done) from other resources about ways parents can remember their children who have died. Some of those ideas include:
- Create a baby album with all your keepsakes in it. (This might take different shapes or forms depending on what keepsakes you have.)
- Make a collage frame, remembrance or shadow box with pictures, mementos and other things that remind you of your child.
- Plant flowers or a tree in your child’s memory, perhaps in a place you like to visit or that you associate with your child.
- Participate in walks or runs in your community.
- Buy memorial bricks (local parks often offer this as a fundraiser).
- Name a star after your baby.
- Write.
- Light candles.
- Volunteer or work on a special project in your child’s memory.
- Donate to a child who would be the same age as your child would be.
Do you have any other ideas to share?
Second Star
February 18, 2014 at 11:14 pm | Posted in Grief, Jake, life lessons, Love, Sawyer, Time | 5 CommentsTags: baby loss, child loss, death of a baby, international star registry, new not so normal, siblings, stars, ways to honor the memory of your child
When Jake died the hospital gave us a packet of information to take home. I remember trying to read it through my tears and being unable to make out most of the words. When I got to the page on “Ways to Honor Your Child” I got a tissue, wiped my eyes and read. One of the ways was to name a star. Before I knew it I was on the phone buying a star for Jake:
The star date is his birthday and it is in the constellation of Leo (Jake’s zodiac sign). We have the star certificate with all of Jake’s other belongings. I think before now the only other person I told that I bought a star was Evan. Buying the star made me feel a bit better for the moment. It was something I could do for Jake. Funny how time changes some things. . .
After Sawyer died I did not buy a star. The thought of buying another star did not make me feel better. Recently, I came across Jake’s star certificate and decided that I did want a star for Sawyer after all.
I tried to order it online and then finally called. I wanted Sawyer’s star date to be his birthday, just like Jake’s. The star registry only goes back 2 years – which meant 2012, 2013 or this year. There is no 2009 option. I chose this year – for Sawyer’s 5th birthday.
Sibling rivalry is an issue at times in our house with the twins. I will never know if Sawyer would be unhappy that Jake had a star and he did not but the second star bought to avoid any worries. It made me feel a bit better and it was something I could do for Sawyer.
Unfrozen
February 14, 2014 at 10:54 pm | Posted in Death, Grief, life after loss, normal?, Sawyer, twins | 5 CommentsTags: Atlanta snow, baby loss, child loss, death of a baby, Frozen, ice, new not so normal, perspective
“Everything is Awesome” has replaced “Let it Go” and “Do You Want to Build a Snowman“at our house. The snow and ice are gone. We were really lucky and never lost power. However, we did follow the advice of the robocall from our mayor and stay home. The twins watched I am not sure how many hours of television but I know it was a lot. It does not bother me the way I thought it would (before being a parent when I had all these big ideas about what kind of parent I would be. . .). Originally, I was going to be one of those parents that did not let their kids watch too much TV but Sawyer’s death quickly changed that. It seemed much better for the twins to watch Elmo than to watch their mom crying endlessly. So, on went the TV.
We did make it out of the house yesterday for some sledding.
Today it was almost 60 degrees in Atlanta. Everything melted, we turned off the TV and went outside.
Happy Valentines Day from our house to yours!
Unsubscribed & Unprepared
February 10, 2014 at 10:14 pm | Posted in Death, Grief, life after loss, Love | 12 CommentsTags: Atlanta + Snow = Disaster, Atlanta snow, baby loss, child loss, death of a baby, hope, new not so normal, thoughts, twins
The week before Sawyer was born Evan and I realized that we would have 2 1/2-year-old twins at home during the winter with a newborn. We had not planned to send them to preschool until they were 3.
The twins plus winter plus a newborn at home. All of a sudden 2 1/2 seemed like the perfect preschool age. I called around and there were not many preschools with 2 open spots. We were super lucky and found a school for the twins. The school started the first week of January – Sawyer had died the week before and I did not want to let the twins out of my sight (but that is a different story. . . ).
I did give my name and information to a few other schools. I get emails from them now and then. I have successfully unsubscribed from most but there is one that I cannot get off the list. I usually just delete the emails without opening/reading them but for some reason I read this one. This week my 4-year-old and I were invited to Mommy & Me at 10 am on Wednesday.
There is no unsubscribe button!! What is the etiquette here? Writing an email that my 4-year-old and I will not be there because he is dead does not seem appropriate. Luckily, I got the email today that the Mommy & Me will most likely be cancelled “due to inclement weather”.
Is Atlanta unprepared?! Nope. Not this time. It was 50 degrees and clear today but the Atlanta forecast is for snow. So, school for the twins is cancelled tomorrow. And, Wednesday. The twins and I will be home with plenty of time for me delete those preschool emails.
I’m Scared (repost from my amazing cousin’s blog)
February 4, 2014 at 6:42 pm | Posted in Grief, life lessons, Love, normal? | 5 CommentsTags: amazing, family, fsh muscular dystrophy, hope, life after loss, new not so normal, perspective
I would like to introduce you all to my amazing younger cousin. She is my hero.
This is my life. It’s all that I know. Friends have said they think I’m so brave for just living my life, when I’m just living my life the best I can… just as they are.
The truth is I’m scared.
When I initially decided to start a blog, I intended to make it humorous by discussing the more amusing aspects of my life than the dark ones, but sometimes all I see is darkness. I can’t take a single step without being scared that I will tumble and smash my teeth into the floor. I sometimes feel like I’m spiraling downhill with no end in sight.
I have FSH Muscular Dystrophy, and I’m just scared.
“Courage is being scared to death, but saddling up anyway.”
– John Wayne
Bring soup, be there & other ways to help a bereaved friend
January 26, 2014 at 9:46 pm | Posted in Grief, life after loss | 6 CommentsTags: child loss, new not so normal, thoughts, tragedy
In a few different posts I have written about what people have said to Evan and I after Jake and then Sawyer‘s deaths. There seem to be endless opportunities in life to say the wrong thing. It is hard to put yourself in another person’s shoes and separate out your own feelings. We all have different experiences. We start from a variety of places. Who is to judge what is right and what is wrong? All we can do is try our best.
My mom recently sent me an article called The Art of Presence by David Brooks. It is about a family who has suffered enormous tragedy in their lives (including the death of one of their daughters). The family gives very practical advice such as:
- Be a builder. I had not read/heard this analogy before and I like it so, I am going to share:
“Firefighters drop everything and arrive at the moment of crisis. Builders are there for years and years, walking alongside as the victims live out in the world. Very few people are capable of performing both roles.”
A few other pieces of advice I have heard about but are also worth sharing (I may have also written about these before . . .):
- Do be there.
Even if you do not know what to say it does not matter. Just show up.
- Do not compare, ever.
There is no comparison contest with bereaved parents. Everyone has lost.
- Bring soup.
Love and compassion are necessities, not luxuries. Without them humanity cannot survive.
The Dali Lama
- Do not say you will get over it.
Grief changes over time but in my experience there is no “healing” from the loss of your child.
- Do not say it is all for the best or try to make sense out of it.
The death of a child is not for the best and there is no making sense of it for any parent.
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