Mothering Caroline Grace

learning how to be the mom of an angel


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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.