Dreams

I had a dream that I had them both.

Caroline was alive in my arms and baby girl was thriving in my belly.  Caroline was still herself, the feisty personality I remember, but she had grown.  She had her physical challenges, but had made some progress.  She could more clearly indicate what she needed and had learned to breastfeed.  She was bigger but could still fit comfortably in a wrap carrier.  She was my daughter and she was so perfect.

We went together to my OB appointment.  My OB was shocked to see Caroline but was amazed.

I woke up before I could lose her again.  I reveled in the feeling of having Caroline with me being normal and real before the tears came.

Oh Caroline, how I miss you.  Thank you for visiting your mother in her dreams.  I know you are always with us.

Making Plans

It’s official: I’ve started making plans for this baby.

Yesterday I made my first two purchases. I bought two outfits for next summer (hopefully I bought the right size!) and ordered cloth diapers.  Cloth diapering is something I really wanted to do with Caroline, but with the uncertainty and stress, making the purchase and learning something new did not happen.  My husband is humoring me in trying cloth diapers this time and I think he’s going to like it!

Anyways, this is a big step for me.  Although various screenings have been negative, we have not yet had our anatomy scan, our diagnosis milestone with Caroline.  Yet I’ve made some purchases already for this baby.  I am trying to look to the future and be optimistic.  I am making plans and hoping that my dreams are not crushed.

This point in the pregnancy has been difficult for me.  I am starting to feel movement but it is still very subtle, which leads to panicked moments of, “I haven’t felt her move in a few hours, what if something happened?”  Then I feel something which keeps me satisfied for a little while, but then the cycle starts again.

Caroline’s movements were always very subtle.  I wonder if this baby will take after her sister or have boxing matches with my bladder?  It is too soon to tell.

Caroline, I love you.  I miss you.  Please watch over your sister and mom as we get through the next few weeks.

Mothering Another

This blog has always been a way to reflect on what it means to be Caroline’s mother.  This space is filled with memories, love, and the struggles of parenting a child who is no longer physically here.  A change is coming to our family that will bring more memories, love, and parenting struggles.

We are expecting our second child, another little lady!

We are so excited to add to our family!  However, it is very scary when you have firsthand experience of how fragile pregnancy and life is.  We hope and pray for the chance to parent this child here on earth and to have the chance to tell her about her amazing big sister.

Thoughts and prayers are appreciated as we embark on this journey for a second time.

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!

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.  

Difficult Parenting

There are some aspects of parenting that are difficult and unique to teenage daughters.  

My husband and I have been binge-watching Friday Night Lights and these parenting situations come up often on the show.  In one scene, the father walks in on his 17-year-old daughter in bed with her boyfriend.  The parents then have to talk to her about her feelings for this boy, that she is under no obligation to continue to have sex if she no longer wants to, and the use of protection.  It is a difficult conversation for both parties but one they had to have.  On the show they do a good job of showing the struggles of parenting a daughter at that age.

After we watched the episode, my husband said that he’s sad that he won’t have these conversations with Caroline, but also glad because they are so difficult.

I feel so sad that he may never parent a teenage girl.

Men in his family generally have boys.  He is one of 3 boys, and his brothers have 3 boys between their two families.  Caroline was the first girl in the family in a long time.  What if we don’t have any more girls?  

Infant loss is so much more than that.  We may have lost our opportunity to shape a young woman, and that is a loss too.

Remembering Her Sweet Soul

Caroline had a sweet demeanor.  She was such a content baby, never fussing as she was passed from person to person.  She loved to be cuddled and warm.  She loved snuggling with mommy and daddy.

As she grew, she became more alert and we got to know her beautiful blue-gray eyes.  She explored the world around her with those eyes, and loved taking in the sights when we moved from room to room.  We took pictures at home that captured Caroline’s alert moments in a way that no one else could.  However, our amateur photos had lighting and color issues that could use a professional’s touch.

We decided to have a photographer professionally edit our favorite photos taken at home.  She went beyond our expectations by removing Caroline’s feeding tube from some of her pictures.  Caroline hated that feeding tube.  The edited pictures now capture Caroline’s free spirit in a way that you could not see with that plastic tube taped to her cheek or her chin.

 
I am very protective of my pictures of Caroline.  Second to my memories, they are the firmest link to my time with the sweetest baby in the world.  I find myself looking at this picture often every day, still amazed at the beautiful miracle I was blessed to meet.  Through this photograph I can feel the love in her eyes and remember how it felt to stroke her hair and kiss her forehead.

Every day apart is impossibly hard, but I am so honored to be Caroline’s mom and wouldn’t trade it for anything.  Her sweet soul inspires me every moment of every day.

Year 2

I have entered year 2 post-loss.  I thought it would get easier but it hasn’t.  In fact, lately grief has taken a firm hold.

I haven’t been sleeping well and the past few days I’ve been very low.  Struggle-to-get-out-of-bed, achy-heart, nothing-is-very-funny kind of low.  It’s scary to have come this far and still have days where the pain is so fresh.  Last evening I felt like I couldn’t breathe and needed to get out of the house.  I went shopping and bought myself a pair of jeans.  I was down another size, which normally would have been very exciting for me, but it still wasn’t enough to make me smile.

My husband and I have been so bored in the evenings lately.  I know that if Caroline were still with us, our evenings would be anything but boring.  That hurts, the way our plans were ripped away from us.  We were so ready to start filling our house with children.  When Caroline was with us, our home was so busy and noisy and perfect.  I miss that.

I miss Caroline so deeply.  She is still, and possibly always will be, at the forefront of every thought.  I feel her presence in the sunshine that she loved.  I ache to hold her in my arms. I yearn to see her play and grow up. I love her with every ounce of my being.

I have heard that year 2 can be harder than year 1, since the permanence of it all starts to really sink in.  It is still too early to judge but I can see how that could be true.  For those of you further along this journey, has this been the case for you?

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!

Heaven Anniversary Recap

The past few weeks have been incredibly hard.  I found that the days leading up to and following the anniversary of Caroline’s death have been harder than the day itself.  I think that was because my husband and I stayed busy together that day.

We started the day by going out to breakfast together.  We then came home and made a plan for the rest of the day.  I finished putting together the pinwheels that we planned to bring to the infant section of a local cemetery.

  
My husband then had the spontaneous idea to donate blood in Caroline’s memory, so we went down to the blood bank to do so.

After donating, we drove around until we found an infant section of a cemetery to decorate with our pinwheels.  It brought up a lot of emotions.  Caroline’s ashes are currently at home since we don’t plan on settling in this area, so a cemetery trip was something we weren’t used to.  My heart hurt for each of those parents and the children gone too soon.

  
After placing our 13 pinwheels, we went to an art fair in town that we had stumbled upon last year.  It brought back the memory of my husband purchasing a piece of art that said, “Don’t cry because it is over… Smile because it happened.”

We then went to dinner at our favorite brick oven pizzeria, and finished the day by watching Caroline’s favorite movie, Frozen.  I used to watch it with her while she cuddled with me in her rocking chair.  She loved the music.

We spent the day honoring Caroline and finished it with some tears and a prayer for Caroline.  We love her so, so much.

I honestly don’t know how I’m going to do this every year.  It’s still so surreal. The physical nature of the emotional pain leaves me reeling.  My heart and arms ache for my baby girl, and they always will.