Mothering Caroline Grace

learning how to be the mom of an angel



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?



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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Memory Monday

Every night, I watched Caroline’s chest rise and fall. Going to sleep was ever so peaceful. She looked so beautiful and happy when she slept. I would listen to her breathing as I fell asleep, with her bassinet right next to our bed. I kissed her goodnight and always told her that I loved her. That was something I said countless times every day. I love you, I love you, I love you. Mama loves you so much.

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Memory Monday

When Caroline was born, everyone who could make the trip came to see her. Her aunt and uncle spent hours and hours on the train – in fact more hours traveling than visiting – just to see our little miracle. Aunts, uncles, and cousins spent hours in the car coming to see her. Grandparents drove overnight for the chance to meet Caroline.

We had no idea that we would have so much more time than we expected for cuddles and sunshine. Caroline, you are so special and loved. We will never stop loving you.

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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!


Memory Monday

Caroline’s aunts and uncles on her daddy’s side drove out to visit us for a few days.  They were so excited to meet the niece that they didn’t know they would get the chance to meet.

Caroline is the first girl cousin in the family, and her two cousins were excited to meet her as well.  One asked his mom, “Can’t they just fix her heart?” after being told how Caroline would not be with us for long.  When I heard of this, my heart ached for him and for my family.  I wish it were that simple.

When everyone arrived, they were so thrilled to hold Miss Caroline.  Although they were nervous about her breathing, they all did well with keeping her in a good position on her side.  Her younger boy cousin was shy around her because of her cleft lip and palate, but her older boy cousin held Caroline and said, “I’m so glad we came.”  Caroline’s aunt works in children’s clothing and brought all of the New England sports gear for Caroline that we could not get here.  We dressed her in a Patriots onesie that was of course, pink.  The Patriots were the one team that I really called my own growing up, so it was special for both me and my husband to dress Caroline in her home team’s outfit.  She still kept her girly look with a matching headband.  Caroline was always in style.

This weekend we celebrated a Superbowl win, and I think Caroline was cheering with us, from heaven.  For some reason the Superbowl without her was so hard.  I cried myself to sleep every night this weekend missing her.  We were supposed to see our team win as a family, and I couldn’t shake the thought that she should be wearing another Patriots outfit, one that is much bigger.

I love and miss you, baby.  So much.