Mothering Caroline Grace

learning how to be the mom of an angel


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NILMDTS Remembrance Walk

My husband and I are attending the Now I Lay Me Down To Sleep remembrance walk in Colorado this year.  Our registration is paid and plane tickets are booked!  I am getting more and more excited for the weekend that will be all about Caroline.

We ordered custom tees yesterday that we will wear during the walk.  They are awesome!  On the front is a picture of the sun (which Caroline loved) with her name and “Beloved Daughter, Trisomy 13 Miracle.”  On the back, we wrote, “Proud Parents Walking for Caroline and Trisomy 13 Awareness,” followed by a beautiful picture of our baby girl.  We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk.  I can’t wait for the shirts to come in!

We are so thankful for the photographs taken by NILMDTS and the support they have provided.  I am so grateful to the photographer who sat in the hospital waiting room at 3am waiting for Caroline to be born.  The NILMDTS Facebook page has also been a great source of support in our grief.  I anticipate that the walk will be lovely, and can’t wait to spend it honoring Caroline’s memory.  We love you, Miss Caroline!

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Memory Monday

Caroline loved playing with her hands.  On ultrasound she always had her hands near her face, preventing us from getting a 3D image of her beautiful profile.  When Caroline was born nothing changed – she continued to keep her hands up by her face and they were always so interesting to her.

One day, Caroline truly discovered her hands in that she found a way to get one of those precious fingers in her mouth.  It looked like she was just resting her hands in the usual position because five fingers remained outside, but she managed to get an index finger in her mouth and was sucking away.  It was truly one of the cutest things I’ve ever seen.  She was so content, sucking on a finger and loving life.  As a baby should get to do.


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Caroline’s First Birthday Recap

When I get sad, I get quiet.  Apparently, that also applies to my writing.

However, I would love to share what we did on Caroline’s special day, March 26th.

We live quite a distance from our family and many friends, so we asked that they help us celebrate by sharing pictures of their sunrises.  We woke up to see the sunrises for our girl who so loved to be outside in the sun.  It was the perfect way to remember Caroline.

Both my husband and I took the day off from work to be together.  I had plans to wake up at Caroline’s time of birth (5:48am) to take my own sunrise picture, but unfortunately we had a rainy day and it could not be done.  Instead, we slept in and woke up to Caroline’s sunrises from across the country.

Some of our sunrises:

AZ

Arizona Sunrise

IN

Indiana Sunrise

ID

Idaho Sunrise

FL

Florida Sunrise

CT

Connecticut Sunrise

MA

Massachusetts Sunrise

 —

We decided to go out to brunch together.  At brunch, we let our emotions wash over us and talked about the day that Caroline entered this world.  We are so thankful for the happy memories that we made with our little miracle.

Another way that we celebrated Caroline’s birthday was with random acts of kindness.  At brunch, an older woman came in alone and sat at a table across from us.  We decided to pay for her lunch in Caroline’s memory.

Friends and family participated in the random acts of kindness too, which was one of my favorite parts of Caroline’s birthday.

Some messages we received:

“This morning I watched an exhausted mother of three small children struggle to juggle her responsibilities and her sanity. While she tried desperately to find her wallet within her huge diaper bag, I quietly paid for her items. Happy Birthday, Caroline!”

drinks

“Caroline is still bringing so much joy! She made my coworkers VERY happy while working on report cards! Happy birthday!!”

“Happy Birthday, Caroline!! I have your picture hanging up in my room as a reminder of what pure love is and to cherish and remember our loved ones every day. I remember talking about you with your mom and watching her smile as she shared your baby books with me. I wanted to buy a stranger a coffee today in the drive through, but since no one was behind me, I left a gift card and told the cashier about your sweet 1st birthday party, and why I was paying it forward. He was really inspired to do the same! You continue to touch people’s lives, Caroline!”

 —

After brunch, we went to the nearby grocery store to pick up supplies for Caroline’s special day.  We went in intending to only get a cake, but we emerged with a cake, a fresh bouquet of flowers, a “Frozen” Happy Birthday balloon with Elsa and Anna, and a pink balloon to release for our sweetheart.  You only have a first birthday once, right?

We came home and set the flowers and balloon by Caroline’s urn.  We again gave ourselves time to feel what we needed to feel.  That afternoon, we wrote letters to Caroline and attached them to our pink balloon.  We released the balloon for our special lady.

balloon1

balloon2

I then did the one thing that I had specifically planned to do.  I read through my journal of our time with Caroline since her diagnosis.  I laughed and I cried.  I plan to do this every year on her birthday to make sure I remember it all.

journal

That evening, we celebrated with the cake we had bought earlier.  We even broke out the party hats that we had purchased for Caroline’s one-month birthday.

cake

Overall, it was a very emotional day.  On the one hand, we remember Caroline’s birth day so fondly because we had no idea if she would even be born alive, and we experienced the miracle of her live birth.  On the other hand, it was so sad and so hard to not be able to celebrate with her.  I imagine she would have gotten frosting all over her face and been full of giggles if she was still physically with us.

Thank you to everyone who shared memories of Caroline and let us know that we were not the only ones to remember her special day.  Sometimes the best gift to a grieving parent is to let them know that they are not grieving alone.

We ended the day by saying a prayer together for Caroline.  We cannot wait to see her again someday.  We love you, we love you, we love you, our strong, wonderful daughter, Caroline.  Happy first birthday!


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Memory Monday

Last year on Valentine’s Day, I was celebrating the fact that Caroline was still with us.  My husband and I knew that she could pass away at any time, but a little over a month before her due date she was still safe and sound in my womb.  We cherished every day that we had with her.  We loved every kick and every hiccup.  We learned that she loved peanuts just like her dad.  We took her to sporting events, knowing that it was likely our only chance to share those moments with her.  We loved with a love that was too big for the fear of what was to come.  We knew it would be hard to say goodbye, but we knew every second with our sweet daughter was worth the pain.  We hoped and prayed that she would not suffer and that she would get the chance to meet her family.

My husband went out of his way on Valentine’s Day.  I came home from work to two bouquets of flowers in vases on the kitchen table.  One had a dozen red roses and a card sat in front of it with my name.  The other had a single pink rose and a card sat in front of it with her name.  Caroline.  I immediately began to cry.  It meant so much that he had included Caroline in what would likely be our only Valentine’s Day together.

We dried Caroline’s rose and saved it for her.  It now sits by her urn, with the ribbon the rose was tied in and the words “I Love You” in a cursive script decoration that came with the flower.  No words could be more true.  We love you Caroline!


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Memory Monday

I chose a med-free delivery.  I made this decision for two reasons.  First, so that I would be as alert and myself as possible for the likely short time that I’d have with my daughter.  Second, so that her heart wouldn’t have to withstand the drop in blood pressure associated with an epidural.  For a healthy baby, the blood pressure drop is of little concern, but I didn’t know how Caroline’s heart would handle it.  I wanted to give her the best chance that I could.

During my pregnancy, I really had to concentrate on feeling Caroline’s movements when doing kick counts.  I think this was because Caroline was small and my fluid was low.  Her movements were usually subtle.  When I went into labor, I was more focused on getting through contractions than feeling movement, so when my OB asked if she had been moving, I responded, “I don’t know.”  We chose not to monitor Caroline’s heartbeat, so no one knew if she was still with us as my labor progressed.

When I was in the final stages of pushing, I felt one strong kick.

I kept it to myself, not wanting to get everyone’s hopes up, but in that moment I knew she was still with me.

After Caroline was born, the first thing I remember is my husband saying, “She made it!”  There she was, looking right at me and soon releasing her first cry.

The rest of the time after Caroline’s birth became a haze.  I was not groggy from pain medications; instead, I was groggy from being awake all night in labor.

This is when our Now I Lay Me Down To Sleep photographer came in.  She took pictures of Caroline’s baptism.  She took pictures of Caroline with her family.  She took pictures of Caroline being evaluated by the NICU team.  When I didn’t want to give her up, she promised that it would only take her a few minutes to take some pictures of Caroline in the warmer.  It did and they were all beautiful.

Thanks to Now I Lay Me Down To Sleep, my hazy memories of that early morning in March are now so clear.  Thank you for providing the priceless gift of photography to families in need.

Today, the Today Show featured a piece on Now I Lay Me Down To Sleep.  The family that they interviewed was so much like our own, that I shed many tears watching it.  However, I am so thrilled that the Today Show helped to break the silence on infant loss and helped NILMDTS to become more of a household name so that families in need will know to ask for them.

The piece can be viewed here:

http://www.today.com/parents/portraits-fatally-ill-newborns-help-heal-parents-heartbreak-1D80432195?cid=sm_fbn

The NILMDTS website can be viewed here:

https://www.nowilaymedowntosleep.org/


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Memory Monday

I am so grateful for every picture that we have of our dear daughter.  We had professional pictures taken immediately after Caroline was born and the day before she died.  I am ever grateful for those precious memories frozen in time and the photographers who stood by our side.

I placed something in Caroline’s hospital bag that I didn’t know if I would use.  A week or two before her due date, I had the idea to get a chalkboard and decorate it with her name and pink baby stickers.  The idea was to update the chalkboard with how old she was and to take pictures of her with it.  It would give us a way to look back and know how old she was each day.  We knew of the strong possibility of not getting a chance to take chalkboard pictures, but we hoped and prayed for some time with our little girl.

We were so thrilled to be given time together!  In the hospital, we started by taking pictures of us, Caroline, and her chalkboard every few hours.  Soon, she had survived her first day, and the chalkboard proudly read, “I made it through my first day!”  Every day from then on, we took a chalkboard picture.  “Caroline is 5 days old!”  “Caroline is 1 week old!” “Caroline is 22 days old!”  “Caroline is an 8 week old inspiration!” “Caroline is 58 days old!”  Each day, her chalkboard age declaration ended in an exclamation point, because we were thrilled to be witnessing the miracle before our eyes.  Every day, minute, and second was such a gift.

We always waited to do Caroline’s daily chalkboard picture until we had a visitor or when Caroline was most alert.  In the progression of pictures, she gets more alert the older she gets.  It was amazing to see her grow and interact with her world.  We made a collage of all of the chalkboard pictures, and it shows how loved she was and still is.  Every person who was able to visit was thrilled to be in the chalkboard picture, and the collage reminds me how loved Caroline is by so many people.

Love you forever and ever, Miss Caroline.

 


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Memory Monday

Last year, we passed out Halloween candy.  An orange shirt with a black cat and “boo” printed on it covered my small but present baby bump.  We smiled as each trick-or-treater came by, dreaming of taking our baby out to trick-or-treat sometime soon.  I was just starting to feel what might be kicks, but I wasn’t sure.  I was so excited to start feeling my baby move.

I was anxiously awaiting our 20-week ultrasound, coming up on Thursday.  All we knew at that point was that our baby had a great heartbeat and my stomach was growing the way that it should.  We were anxious to see a glimpse of our baby and find out if we were having a boy or a girl.  According to my husband, it was a boy because apparently men in his family only have boys.  I thought it was a girl.  I knew the diagnostic aspect of the ultrasound but I pushed my fears aside and thought that since everything had been fine, we had nothing to worry about.  If there was something wrong with the baby, we would maybe need more medical care but we would do whatever we needed to do to help our baby thrive.

We had no idea what was coming.

The last moment of blissful ignorance was during our ultrasound.  The tech asked us if we wanted to know what we were having, and she told us that it was a girl!  We were so amazed and happy.  My husband thought about dancing with her at her wedding in that moment.  I thought about talking her through boy trouble.  The tech was kind enough to give us that moment of pure joy and listen to our stories of how spoiled she would be as the first female grandchild.  She was such a miracle.

My grief is coming full circle.  I have no idea how to get through this week.  A year ago on Friday, we got the worst news of our lives, that there was something wrong with our baby.   A year ago on Saturday, we got the crushing diagnosis.  I haven’t been writing as much this past week because I get to the keyboard and freeze.  I don’t know what to say.  There are no words.  I miss my daughter.