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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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.


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Memory Monday

I loved Caroline’s hands.  

Caroline had an extra pinky on each hand.  When our maternal fetal medicine doctor saw the extra fingers on ultrasound and pointed them out, I was shocked and scared of how her hands would look.  I didn’t know how beautiful six fingers could be.

Caroline’s right hand had the classic trisomy clenched fist.  Her left hand was different; her fingers were always curled but never clenched, and her fingers did not overlap on that side.

My favorite view of Caroline’s perfect hands was when she reached towards me.  I’d then pick her up and those beautiful hands would soon relax, opening from their usual position.  Oh how she loved being in mommy and daddy’s arms!


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Memory Monday

We were so excited to show her off!  

It was my birthday and Caroline was still with us, doing well!  It was also the day of my scheduled postpartum visit to the OB.  We didn’t know if Caroline would make it to that appointment.  The odds told us she would not.  But here she was, so sweet and very much alive.

My family of 3 came to the appointment.  My OB was running behind as usual.  I never minded because he always gave attention as if you were the only patient on his schedule, and if that meant waiting, it was fine with me.  We sat in the waiting room, with Caroline in her car seat until she was ready to be held instead.  

Other patients asked how old Caroline was and said she was beautiful.   I got to feel like a normal mom for a little while.  I didn’t mind overhearing one woman telling her husband that “that baby has a cleft lip.”  Caroline had the opportunity to show people how beautiful and happy she was.  The cleft lip never held her back.

Finally we were called to an exam room.  Mike proudly held Caroline in his arms, and my OB was so happy to see her!  I think he was amazed at how well she was doing.  We took a chalkboard picture of Caroline and the man who delivered her.  She was 40 days old that day!

We returned home after my appointment and celebrated the day with some orange creamsicle cake.  It was a sweet end to a sweet day.


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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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The Winding Hallway

It was familiar, but I was surprised how quickly I had forgotten the details.  Large oil paintings in bright colors lined a long, winding hallway.  We had to walk down this hallway to get to our appointment.  The colors seemed a little brighter this time.

Yesterday, my husband and I drove into the city for our final appointment concerning Caroline.  We decided against an amniocentesis during my pregnancy, and instead had diagnostic chromosome testing done at Caroline’s birth.  We got the phone call from my OB’s office a few weeks later to tell us that Caroline did have Trisomy 13.  In the moment, I didn’t ask any questions or need to know more.  Whether or not we were genetically predisposed to Trisomy 13 had no impact on taking care of our precious baby girl.  Now, our priorities have shifted and we decided it was time to review the results and our risk for a future baby to have trisomy.  I finally made the appointment to go back to the city for genetic counseling, to go over Caroline’s results.

I had nerves all morning.  We were going back to the office where a genetic counselor first broke the news to us that our child had Trisomy 18 or 13, and was not likely to survive.  Being back in that office put me on edge, and I sat in the waiting room with my arms crossed, looking very uncomfortable.  I was.

We were finally called back, into the same conference room where our hopes and dreams had been destroyed.  The genetic counselor that we saw was not the same person that we saw when we were pregnant with Caroline.  She started by asking us about our time with Caroline.  It had been a long time since I’d told her story from start to finish to a new person, but it felt so good to do so, even with tears.  She then took the time to look at the book of pictures that I brought with me.  We know that the time that Caroline spent with us was truly a miracle and she was the exception rather than the rule, so it was nice to show this woman that babies with Trisomy 13 can live.  Caroline lived for a short time, but that doesn’t make her any less of a person.  In fact, I think it makes her more of a person.

We then talked about the results.  The cells that were analyzed all showed full Trisomy 13, meaning that it is the type that happens randomly and is not inherited.  This means that our recurrence risk is about 1%.  This looks like a great number, but when you’ve already been in the 1% category, you start to lose faith in statistics.  However, moving forward, we now know that we are not putting future children at an unreasonable risk for trisomy.  We hope to have more children someday.

One thing that meant the world to me was that our genetic counselor treated Caroline as a person.  She used her name throughout the appointment and celebrated her life with us.

On our way out, I gave a copy of Caroline’s picture to the genetic counselor, her student, and the receptionist in the office.  The genetic counselors were thrilled to have a picture of Caroline, and I was happy that their image of Trisomy 13 would go beyond what they saw in textbooks.  They would know that every baby presents with Trisomy 13 in different ways, and remember how our little girl beat every odd to spend time at home with her family.

When I gave a copy to the receptionist, she broke into tears and said that looking at Caroline’s picture will remind her how precious life is and help her through her hard day.  I told her that Caroline is our miracle.  She was so sweet, and I was amazed at the way that Caroline’s picture was able to move people.

Leaving that office for hopefully the last time, I felt a sense of relief as we passed through the winding hallway.  Instead of evoking memories of pain, it has softened to evoke memories of all the people in that office that have loved Caroline.  She continues to inspire everyone who hears her story.  Caroline, you amaze me every single day.  I love, love, love you.