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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A Day at the Zoo

This past weekend, my husband and I went away to the city to spend some time together.  We visited the zoo, and as we went to the visitors center to get a map, we saw a group of about 4 children with special needs and their parents.  The children were in the type of wheelchair that I only dreamed of needing for Caroline.

Something struck me when I saw this group.  I felt a sense of camaraderie with them, even though I carry Caroline in my heart.  I am the mother of a child with special needs, even though no one can see it.  I thought it was wonderful that they had all found each other and were able to have a beautiful day at the zoo together.  I didn’t have support from other parents like this when Caroline was here with us.  I felt an urge to talk to them and hear their stories, but I held back.  I didn’t want to disturb them, so I kept walking.

We got our maps and came out of the visitors center, and they were gone.  I asked my husband if he had noticed the children, and he gave me a knowing smile.  Of course he had.  Caroline is always at the forefront of our minds, and seeing those families was a glimpse of what could have been if she was still here with us.  


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Another Anniversary

As of today my husband and I have been married for 3 years.  

It is amazing what we have been through together in 3 years.  One year ago we went shopping for clothes to wear to our daughter’s funeral.  Two years ago we made plans to have a baby.  Three years ago we said, “I do.”  Little did we know how soon the challenges would come.

It’s difficult for me to celebrate today because of the proximity between Caroline’s heaven day and our anniversary.  It makes me sad to think that I will always struggle to smile on our anniversary.

I want to take a moment to thank my husband for always being there to support me, even when things got hard.  Really, really hard.  He is my partner in life and my best friend.  I love you, husband!


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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!”

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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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Tomorrow

Tomorrow is March 1st.  I really can’t believe it.  Somehow I have survived the year and landed back in Caroline’s birth month.

This time of year is a whirlwind of advocacy days.  February is heart month, which is now special to me because of Caroline’s congenital heart defect.  February 28th is World Rare Disease Day, which is now special to me because Caroline had a condition on the list of rare diseases.  March is Trisomy Awareness Month, which is now special to me because Caroline had Trisomy 13.  Of course, March is the most special to me because it holds Caroline’s first birthday.

I keep thinking about what I was doing this time last year, amazed that Caroline was still with me and beginning to feel that I was ready for her birth.  I knew that it meant losing her soon, which was terrifying, but I longed to see what color her eyes were and if she had her daddy’s nose.  I longed to know my daughter, even if it was just to memorize her face and tell her how much I love her.

Caroline came into this world on March 26, 2014, a living miracle.

I want to celebrate the beautiful life that Caroline lived.  A life full of love.

I don’t know how to do this.  I don’t know how to reach my first child’s first birthday without her here with me.  I know she is in heaven without pain, but my pain still remains.  I want to celebrate the beautiful life that Caroline lived.  What do I do?


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I Said Her Name

Yesterday, I gave a talk in front of all of my mentors and colleagues about my research.  This is the first time that I’ve been in front of them in this way since just before Caroline was diagnosed.  It is traditional to share acknowledgements at the end of a talk like this.  I included a thank you for my funding and people who have helped with the project.  I also included Caroline.

I made a decision to say her name.

I have been underwhelmed by the support I’ve gotten at work.  There have been a few who have gone out of their way to be there for me and who do not shy away from talking about Caroline, but most have acted as if nothing has changed.  I came back to work without my baby and everything has changed, but I do realize that my world was the one that was rocked.  I think about her every second of every day, but many have probably already forgotten about my baby.

But not yesterday.  I said her name.  I took the opportunity to thank those who had been there for me during a very difficult year.

Maybe it was inappropriate, but I decided that I did not care.  I realized that if I don’t show that I want to talk about Caroline, no one ever will.  That is just about the worst thing I can imagine in the coming years, so I acknowledged the girl who is always with me, guiding the person that I have become.

I said her name.


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How Pregnancy Announcements Feel as a Bereaved Mother

As the mother of a beautiful, sweet, wanted daughter who left this world too soon, I struggle with hearing that friends and family are pregnant.  Instead of hearing that they are expecting and beginning to glow with happiness, I hear:

“My perfect little life continues to be perfect.  Just wanted to shove that in your face while you grieve.”

“I know that your hopes and dreams for your daughter were shattered, but I wanted to let you know that my hopes and dreams for my child are very much intact!”

“My baby is still alive and yours isn’t.  Just thought I’d let you know.”

Each announcement is a stab in the heart and leads to an hour of crying in bed, holding one of Caroline’s stuffed animals tightly in my arms.  I feel really bad about reacting this way.  I’m really not the jealous type.  I want to be genuinely happy for them, and at times I am, but that initial news is always hard to swallow.  It is another reminder of what I’ve lost.  I spiral into a crying mess, missing my daughter, watching the world continue to turn when I want to hit the pause button, and it prevents me from feeling truly happy.

I am grateful for the texts and the emails that let me process the news on my own.  A phone call or in-person announcement doesn’t give me the opportunity to bury my face in a pillow and cry, which is what I need to do.

I am hopeful that there will come a day when I don’t feel crushed by the pregnancy announcement of a close friend.  I don’t know if it will take a living child of mine for this to change, or if I will always have a hard time learning that another life is coming into this world, a world that my daughter could not stay to enjoy with me.  I hate being fragile like this, but this is how I feel.  And you know what?  I have every right to be fragile right now.

I have wounds that I will tend to for many years to come.  With those wounds comes fragility, but also strength.  I am a survivor of the unimaginable.  I am the mother of a child in heaven, full of love for my beautiful, sweet, wanted daughter who left this world too soon.