Tag Archives: SIDS

Capture Your Grief – 2016 – Day #22

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Pearls of Wisdom

I was surprised and humbled by the number of friends who changed sleep habits after Clara’s death. Some told me it was her passing that made the difference, others said it was in reading posts I had made to Facebook. If I could share just one piece of advice it would be this: Not everyone will listen or change.

I liken this to be similar to the lesson we teach our kids about touching breakables. We tell them don’t touch because it might break. In our loss, we share with the world that safe sleep is really important. It reduces the risk of SIDS and it does save lives. It will be your closest family and friends who ignore you that will hurt the most. It will hurt because it makes you feel like they don’t care or remember your baby. It feels like they are saying, “it can’t happen to me”. They will post pictures of their “beautiful” baby room and you will feel the sting of tears and the searing anger when you see their crib decked out with the latest puffy crib bumper. You will worry about the ones who sleep in the latest trendy “rock & play sleepers”. You will cry when you see an image on Facebook of a new baby sleeping on their tummy on top of blankets or bedsharing. You will pray for every baby.

 

Your first reaction will be to tell them that is dangerous. It is okay to do remind them once, or maybe twice, but please be gentle and remember this one thing: YOU CAN’T FORCE THEM TO CHANGE. Quite the opposite can happen. You will cause them to dig their heels in and shut you out. You absolutely should be sharing safe sleep habits but please, please don’t shove it down your friend’s throat (even though you really want to). Kindness goes a long way and is far more effective in reaching people.

 

Sadly, even seven years later, I still have friends and family that continue to use unsafe sleep environments. Every day I pray that they won’t have to live through the pain that I have. Each October I hope that my daily posts reach them. I pray Clara’s life and passing will somehow touch them in a way that causes them to change their habits. I pray for the day when no more families are surprised by Sudden Infant Death Syndrome. Finally, I pray for the day when no family has to deal with the pain and guilt of losing a baby to a sleep-accident unrelated to SIDS.

day22
#CaptureYourGrief
#WhatHealsYou

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A Piece of My Heart Smiles

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Seven years ago I held you for the last time.  Your body perfect, your eyes closed, your heart no longer beating.  I will be forever grateful for the nurse who called to seek permission to remove your breathing tube and the staff that wrapped you snuggly in a warm blanket.  It left me with the memory that you were simply napping rather than the limp body that I held.

May 12, 2009 is a day burned into memory.  One with many tears and lots of questions.  It was a day we got the call, not to receive an organ but to give one.  We later learned that your heart valves went to two children.  More tears.  That day it took courage to get up and go on.

Today it takes courage to say, I don’t always cry when I think of you.  I didn’t cry today on the anniversary of your passing. My grief isn’t always expressed with tears anymore.

Grief is so different seven years later.  I used to feel ashamed that I don’t cry as often as I once did.  Ashamed that while I do think of you, it isn’t every single day.  Does it mean I love you less?  Am I forgetting you?  Never.

Instead of crying, I smile when I see pictures of your smiling face.  I smile when I get to talk to others about you. I don’t dread people asking me about the number of kids I have.  I don’t worry about upsetting someone by sharing you are gone.  I know that others will simply share their sympathy and sometimes, when I am lucky, they will ask more about you.  Not about your passing but about you.  Things like which sibling looks more like you or if we got to see your smile.  Today people even ask to see you in pictures.  They want to know know more about this little life that made such an impact on our lives.

I find my heart filled when I meet children who were born in January 2009.  I find myself watching them with a smile knowing you probably would be doing those same things.  Rather than remind me of what I am missing, I find they give me a glimpse into the eyes of a seven-year-old.  Their play, their hugs, they make me smile.

I will forever watch your tree grow in our yard.  Watch as the pretty pink flowers bloom each May reminding me of you. I will always feel a little pang of sadness as the flowers change to white and blow away in the wind.  A simple reminder of the shortness of your life in our arms.

It takes courage to admit that today, I am okay, happy even. I am so fortunate to have held you. I am thankful that your life has helped others. You were loved and you are still very loved.

We miss you baby girl!

Clara2016#WhatHealsYou

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#CaptureYourGrief – Day #6

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Books#CaptureYourGriefDay6

This has been a subject I have touched on in years before.  One of the most comforting books for me was a book I received in a care package.  SIDS & Infant Death Survival Guide was helpful for me to see others perspectives.  It helped me to see how my children and my husband might be feeling.

The most helpful was the chapter on When a Baby Dies at the Child-Care Provider’s. It helped me to see how my daycare provider might be feeling.  It helped me to connect with her and ask her questions. It helped me to include her in our family and our grief. She was so much a part of our family before the loss of Clara and I knew I wanted her to be a part of it after.  SIDS could have happened anywhere and to anyone caring for our baby girl and unfortunately it happened in the care of someone we loved.

I always recommend this book to SIDS loss families and sometimes even to others.  Many will read this book and yet each will be touched in their own unique way.

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#CaptureYourGrief – Day#3

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In Honor

CaptureYourGriefDay3

Every day, every week, every month, every year I try to honor Clara’s memory.  Sometimes the ways we honor are simple, we share a story or a sweet memory.  Other times they are bigger, we choose a child the age Clara would be today and share Christmas gifts with her.  We laugh, and cry, and smile in her honor.  We share our fears and find hope and we love like no other, in her honor.

Clara was born January 21, 2009.  She was my third child and my husband’s first.  She was loved from the moment we knew we were expecting. I was 26 weeks pregnant at our wedding and she so lovingly danced between us for our first dance.  When word of my brother’s suicide broke and emotions ran wild, she patiently waited and grew a few more weeks.

The day she was born she brought light into our family.  Her older brothers adored her.  They did everything they could to make her smile and laugh.  They were at daycare with her the day she left this earth and by the grace of God didn’t know anything was going on until after she was on her way to the hospital.

Clara was born at the same time as several of our friends little girls.  Today we watch Alexis and Paige grow and I often wonder what Clara would be doing now.  These girls are so sweet and love to offer hugs.  Those hugs mean the world to me.  They remind me of how Clara might feel in my arms.

The year Clara was born the song “All American Girl” by Carrie Underwood was popular and that seemed to be our vision of her.  We dreamed of her growing up, going to school, getting married, having children of her own.  Those dreams shattered on May 12, 2009.

The one thing that remains is our love for her.  We have found ways to include her in our family as often as we can.  Each year we travel to SD to take our family photo at the Run for Their Live’s SIDS run.  Each birthday I make a barbie cake to remember her lovely birth.  We do something special for another child each Christmas.  We take opportunities to share her story when we can and I do this project each year to honor her.

I will never be the same person I was with her in my life but I think she would be proud of the mama I have become.  Her life has taught me so much.  In dealing with her passing I have found much strength in helping others.  It prepared me for the stresses of her younger brother, Lincoln, who has some major medical needs.  I have been forced to face my fears and trust in the Lord with all my heart. I am thankful that I got to share my days with her.  Today I am thankful for the memories and the opportunity to honor her.

What we have once enjoyed deeply we can never lose.
All that we loved deeply becomes a part of us.
Helen Keller

The first family picture

Our 1st family photo.

Little Sister

The big boys and Clara

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A few of the babies born with Clara.

Sharing memories of Clara with her three little siblings.

Sharing memories of Clara with her three little siblings.

Clara's Memory Wrapping Session 2014

Clara’s Memory Wrapping Session 2014

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Leave it to the Imagination

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Watching little kids role play can be an amazing thing.  I have found there is a distinct difference in the way boys and girls play.  Even without trying to create gender lines my little ones have taken to playing kitchen with stuffed animals, superheroes, transformers, and dolls.

This past month has been interesting, and hard, to watch.  A few weeks ago my 2 year old came running down the stairs with her baby in her arms.  She was yelling, “My baby isn’t breathing!  Help her! Help her!”.  She dropped her baby in my lap and looked at me expectantly.  I hugged her baby and told her she was just napping.  My little lady took her baby upstairs only to come running again just a few minutes later.  This time she told me, “She died mommy, she died.  Save her! Save her!”.  Then she “kissed” her baby (more like mouth to mouth) and left her baby on my lap because she died.

It has been extremely difficult for me.  I have not a clue where this comes from.  She knows her older sister passed away but we have never really talked about the “event”.  It shocked me that her role play could affect me in such a way that it would cause me to have flashbacks.  As she continued to play this game, I did my best to try to distract her with tea parties and walks and hugs and kisses.  The distractions seemed to work.  She seemed to quit role playing her baby dying.

Reprieve is sometimes a funny thing.  This past week she found her daddy’s new shoe box.  An innocent looking shoe box that started as a bed for her baby.  Soon it became something different….a coffin.  She brought her baby to me to dress her in her favorite dress.  No big deal. Then she found her baby’s favorite blanket.  Again, no big deal.  Then she wrapped her baby up, gave her baby a kiss, told her bye-bye and I will miss you, and then put the lid on the box.  Finally she put it under the pile of blankets and stood there and gave a little pouty lip.  She went in search of flowers for baby doll but came back with her baby bottle to leave by the blanket pile.  I have seen this and other similar situations happen five times this week.

My older boys smashed that box today.  They couldn’t watch it anymore.  It is just so odd.  We all seem to lack the ability to even explain how she knows this.  She has never even been to a funeral.  We have never talked to her about the day Clara died.  I can only surmise that she has seen enough through movies and tv to put a scenario together.  Maybe she has overheard things from siblings or my husband and I.  I will never know how she knows but I will remember it as the role play that can send those who have lived it into flashbacks, sadness, and a little anger.  (Yeah anger at the box, I think.  My 11 year old stomped it to bits!)

Oddly enough my little lady asked about her sister Clara today.  She and my 4 year old son wanted to know why Clara had to be buried and if she is in Heaven. It is funny how their little minds and bodies play through real life situation.  I can’t say it has been easy to watch but it reminds me that they are grieving in their own way and in their own time.  I have to remember that their grief is different because they have never met Clara and that role play might be their best way to make their sister tangible.  A real sister who is no longer here, who they will never meet on this earth, a sister who is waiting in Heaven.WP_20150708_11_32_59_Pro

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Happy Milestone Day

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Wednesday was the day!!

Haleigh is officially older than her sister was on earth.  It is the last time we will reach this first milestone.  We are so thankful to all those who prayed for our comfort during the past week.  Look at the smile we captured on our special day!!!

We spent the day at family bible camp in Okoboji (http://www.okoboji.org/).  We both agreed that while it was hard to leave Haleigh in the care of others it was equally hard hearing how much Haleigh looked like a doll with her beautiful skin and pretty smile.  That was a comment often said as people passed Clara’s body at the wake and funeral and rightfully so, she did look just like a doll in the casket.  So we both decided that was probably the hardest thing we experienced this time around.  The other thing that ranked up there in the “hard to deal with” category was the music.  Of course this year’s theme was “Remedy” and honestly perfect for us, but some of the music played was heart wrenching to hear since it was also played at Clara’s funeral which made it a bit more difficult for us.  That said, we had a wonderful time.  We met some amazing friends and the kids were never short of attention!!  The community really loves all and we were blessed to have a week away from home during our stressful time.  This week really helped us to focus on what really matters and less on our fears.

We are excited to have been given the opportunity to raise Miss Haleigh and are looking forward to our next “age” milestone of 4 months.  That day will be here very shortly.

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One More Week & Haleigh's First Goal

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As Haleigh gets older I am in awe at the things she is doing.  She has shared with us her first smile, first giggles, first poop-spoltion daipers, first night of sleeping 9hours, you get my drift.  One first we are approaching is the day when she is older, on earth, than her sister.  In a few short days that day will be here.  As we count down the days and continue to add to the list of Haleigh’s 1st’s I am saddened by some of the things that were so abrubtly taken away 4 years ago.  I still wonder how we made it through our loss, how we didn’t allow us to consume us and our brand new marriage.  Some how we made it back to land from the sea of grief.   I am always amazed that it can be done.  We did it!!

As I look at the week ahead I am nervous.   We are traveling and will be in the company of teenage camp counselors who will be tending to Haleigh while we attend bibles studies.  While I am excited for time to focus on God, I am nervous because these young people will be caring for and napping our little girl during a very stressful time for me.  I have never been to the training they have gotten, whether it be through the camp or baby sitting classes, so I have no idea what kind of baby care classes they have been to.  It just makes me anxious because Clara passed while at daycare…a wonderful mother with 5 children of her own!!

Today I have decided that this week will be a great time to influence some young people on safe sleep habits for babies.  Why not?!?!  Just like each person’s testimony about their walks with God can bring one to God, maybe someone with a testimony to why safe sleep is important may stay with them for a lifetime.  I hope it will bring me comfort knowing that they will take excellent care of Haleigh.  I have never taken our babies to daycare around this milestone so this is a good step in my grief, trust, and faith.  I am ready to face that challenge 🙂

As with Lincoln and Preston, I am always excited to share pictures of our big goal and “mini celebration”.  Be watching for pictures!  It will be a great sigh of relief and then we will be on to our 6m old goal.

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How Does it Feel?

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How does it feel to have a baby girl at home??

That is one of the most asked questions now that Haleigh is here.  To that I say great but deep down it is surreal, exciting, and scary.  Surreal because I didn’t expect to have another girl.  Exciting because we have pink and purple in the house again.  Scary because if something happens to Haleigh I am the one at home with her.  I will be the one to find her.  I will be the one to make that awful phone call.  I will be the one to try to save her.  It scares me to no end.  I pray everyday that we don’t have to feel the pain of SIDS again.  Each day she gets closer to the higher risk time frame the more often I find myself checking to make sure she is breathing while she sleeps.  Every morning and nap time I say many thank you’s that I have another day with her.

I can’t imagine my days without Haleigh.  She has such a beautiful smile and is so laid back.  She is such a treat to have in our home and absolutely completes our family.

4 weeks

There isn’t a day that goes by that we don’t appreciate the opportunity to be raising so many little blessings.   Everyday we continue to pray for many more days with all of them, for the chance to see their children, and to watch them grow old.  Life means so much more after you suffer the loss of a child.  Every day with these 5 is a gift. 🙂

Mason, Preston, Damon, Haleigh, Lincoln

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Why is it Always the Parent's Fault?

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I am often taken aback when I hear people commenting on the loss of a child as though it was somehow the parents fault.  Don’t get me wrong, there are times that it might actually be but I think for a majority of the time it isn’t.  When it comes to SIDS, I often hear it is a lack of parenting skills that led to the death of the baby.  When is comes to suicide, I hear how the parents must not have been around enough or they didn’t pay attention to their kids problems.  When it comes to car accidents, the parents should have paid more attention or if the child was with someone else I hear that parents didn’t do enough background checking on their child’s friends parents.  And even when my 4th child was born with birth defects, it was my fault because somehow I didn’t take care of myself during the pregnancy.  I just want to reach out and shake them!!  Instead I try to remember that they likely haven’t experienced the loss of a child nor cared for a special needs child.

As a parent who has lost a child I can tell you, I don’t need to hear from outsiders that it was somehow my fault.  I already have those thoughts in my head.  Was it my fault, could I have prevented it?  When I look at SIDS and the loss of my daughter I know there were things that could have reduced her risk of passing.  Does that make me a bad parent for not knowing… I sure hope not.  There is a sea of information out there and you can’t possibly know everything.  I did all the child prep classes, no one ever said a word about safe sleep and hardly 2 minutes was spent on “back to sleep”.   The last thing I need to hear is that Clara died because of my poor parenting or even that it is God’s way of weeding out the bad genes.  These days I spend time getting the word out about SIDS in hopes to inform other parents so hopefully they will have many more days with their babies.

When it comes to Lincoln and his birth defects, I can’t tell you how I mad was when I started hearing the stuff being said behind my back.  We had genetic testing done and found his condition to be a random genetic mutation.  No amount of prenatal care, folic acid, ect would have prevented it.  Does that mean I am a bad mom??  I hope not.  But even with these results I still hear that somehow I got what I prayed for or that God obviously is teaching me a lesson.  For real?!?!  We must not believe in the same God.

I simply ask for you to ask a parent the circumstances behind their child’s passing or special need.  Learn the facts directly from the mouth of the parent.  Don’t rely on word of mouth or a quick internet search for all your info.  Do any research after you know all the facts surrounding that child’s life/passing.   I am more than willing to tell you about Clara’s passing or Lincoln’s condition because it means that other parents learn new things, I can give you info to search on, and I am hopefully less judged.

When we know someone that has lost a child PLEASE to remember that most of the time it really was an accident that took their life.  Something unpreventable by the parent and child, something out of their control.  Instead of wasting time judging the parents on their parenting skills we should be offering support to all involved because you never know when something might take away your child or loved one and you might be in need of that same support you gave them.

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