Mothering Caroline Grace

learning how to be the mom of an angel


Grief Caught Up

I had big plans this weekend, starting Friday afternoon, so although I knew Friday was Caroline’s half birthday, it didn’t really hit me then.  Instead, Monday was so hard.

I felt it from the moment I woke up.  That pressure on your chest that goes along with the greatest grief a person can come to know.  I packed the stuffed bear that the funeral home gave me in my bag to take to work, because I knew it was going to be one of those tough days where I need to hold something in my arms.  I really don’t care if anyone thinks I’m crazy.  I’m not, I’m just grieving in my own way and if I feel like I need a bear in my arms, I will take it.

During my drive in to work, some song that was a little bit sappy but had nothing to do with Caroline brought me to tears.  I had a grief explosion of ugly crying in the car.  There is no controlling those explosions of grief; when it happens, you just have to feel it and try to get through it.

I left work early because I had reached my capacity of getting work done for the day.  I didn’t have any more in me left to give.

Thank goodness for my husband who was there for me when he got home.  His hugs and the way that he is happy to bring up Caroline in conversation help to keep me going.

Missing you, peanut.



Memory Monday

I was excited to get outside and give Caroline some new experiences.  We had gone for a few short walks with her, and a short ride in her stroller, but I wanted to take her to the park.

My mom and I waited one afternoon until the perfect time to take her.  She had just been fed and changed, so we wouldn’t need to worry about syringes or heating breastmilk while we were out.  I packed up a bag of anything we might need – some extra diapers, blankets, and pacifiers.  I strapped her into her car seat that was attached to the stroller and we were ready to go!  However, Caroline had other ideas.  She started crying in the car seat, and didn’t let up as we walked down the drive.  Although it was the perfect day for me, Caroline had other ideas, so we turned around and went home.

A few days later the weather was nice again and I wanted to give the walk in the park another try.  At the perfect time in the afternoon, we made a similar attempt.  Again, as we went down the drive, Caroline started to cry.  Defeated, I turned around.  However, as we were almost to my door, Caroline relaxed and fell asleep.  We turned around again and were off!  The park is across the street from my apartment, and we soon made it.  Caroline did some looking around and some sleeping.  We did the small loop around the park, not wanting to press our luck, and as we passed walkers and joggers I was asked several times how old she was.  If I remember correctly, I think she was about 7 weeks old at the time.  It was nice to be out in public with Caroline and to be asked these questions.  I think it helped to validate my status as a mom.  Caroline loved the sunshine and enjoyed our walk, and after some pictures we started home.  Just as we got to my door, she started to get upset again.  I think she was getting warm from being outside for so long, so I took her out of the car seat when we got through the door and helped her to cool off.

I love that we have this memory together, of a mom and her baby doing such a normal mom and baby thing.  I love that Caroline had the chance to show her personality and be herself during her time here.  She was the sweetest little baby and I miss everything about her.  Now when I walk in the park, I carry her in my heart.


Happy 6-Month Birthday

Today you would have been 6 months old, Miss Caroline.

It leaves me wondering what you would look like now.  If you would have started any solids by now.  What we would be doing together every day.  What your laugh would have sounded like.

It hurts to be here without you.

All the same, you have changed your parents and everyone who knew you for the better.

I am proud of you always.

I can’t wait to hold you again soon.

I love you.


Happy 6-Month Birthday.





Rediscovering Me

I searched around the house until I found them.  My bag of colored pens was deep in our storage closet, anxiously waiting to be used.

I used to consider myself an artist.  If you asked me when I was 10 years old what I was going to be when I grew up, I would have told you that I was going to illustrate children’s books.  My grandfather was an artist too, and used to take me to local art meetings.  I remember at one the topic was framing and we were supposed to bring a piece of art for the speaker to discuss appropriate framing and have examples.  I brought a picture of a girl and a dog sitting outside that I had drawn in art class.  My picture was discussed during the framing presentation, and the framer commented on how much he liked my picture, not knowing that it was the work of a child.

Somewhere along the line, life got busy and my artistic side faded into the background.  I became occupied by school, science, and life.  Having a career that involved saving the world became more important and I stopped drawing.

When we got Caroline’s diagnosis, one thing I decided was to go buy some pens and to make her a book.  I wrote the book and included everything I wanted to tell her.  That she was loved, and that she’d be happy in heaven, and that her mom and dad would be okay.  I drew pictures to accompany the words.  I became that children’s book illustrator after all.


I read that book to Caroline as she entered heaven.


Now that Caroline is in heaven, I have decided to pick up art again.  Being so close to death puts everything into perspective.  I love to draw.  Why don’t I do it more often?  Life is short and we have to do what makes us happy.  I took the pens out of the closet and I’m determined to make my world a little more beautiful.  Perhaps I can save the world in more than one way.



As television starts back up again, it is time for a post that I have been thinking about for a while.  I have always been a fan of Grey’s Anatomy.  I have often thought back to a scene where Cristina talks to Meredith’s therapist and tells her about Meredith’s pain level.  At this point in the show, Meredith has lost her mother, her father has never been there for her, and she is barely hanging on.  Derek doesn’t understand the loss in her life and the support system that she needs.



Since my daughter died, I have thought that this same fact is true for me.  I live my life at an eight.


I am willing to bet that the same is true for anyone who has lost a child.  On a pain scale of 1 to 10, we are always at an 8.  This is beyond the comprehension of everyone but those closest to us.  They are the ones that notice that we live our lives at an 8.  They are the ones who know that the smiles, while they can be genuine, are hiding the deep sadness that comes when a part of you has left this world.  Caroline is my first thought in the morning and my last thought as I fall asleep.  I try to be strong for her and put on a brave face, but sometimes I have to sit outside in the sunshine to feel close to her.  Sometimes I have to run out of the building at work to burst into tears because I can’t stand pretending that I’m okay for one more second.

If you are reading this because you know someone who has lost a child, be the friend who notices their pain.  If months have gone by and you think that they are doing okay, know that they are not.  Give them a hug and the chance to tell you how they feel.  They live their life at an 8, but you can make that 8 a little easier to bear.

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Memory Monday

When it came to nighttime, we broke all the rules.

Caroline was always a little fussy in the evenings, but eventually she would settle down and go back to sleep.  She breathed best on her side and with the bassinet at about a 30 degree angle.  We used blankets to prop up the mattress so that she was at a good angle, and rolled blankets beside her so that she couldn’t roll to her back or belly.  As a newborn she liked to be swaddled in her sturdy fleece swaddle at night, but soon we transitioned to long sleeved footie pajamas at night instead.  We’d then place a blanket over her to keep her warm.

I know that none of this is how you’re supposed to put an infant to bed, but it worked for Caroline so we went with it.  We learned so much from her – she followed her own rules and as we learned what she needed, we adjusted.  When you’re the mom of a baby with Trisomy 13, the parenting book has to be thrown out the window so that you can find creative ways to best support your child.

I would pull the bassinet up close to me, listen to Caroline breathe, and we would both drift to sleep.


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Looking Up

Miss Caroline seemed to have a preoccupation with the ceiling.  Sometimes there was a clear reason for her to be looking up; the fluorescent lights in the kitchen were soothing to her and always managed to help when she was upset.  Other times, we would just be sitting around the living room, rocking her back and forth, and she, very often, would look up.  I don’t think it was reflexive; she was very capable of following faces with her eyes and tracking things as they moved across her visual field.  There was usually plenty of activity in our house to look at, especially when she was awake and everyone vied to take a picture or talk to her or stare into her deep eyes.  Still, she would look up.

I like to think that there was a reason.

That her angels were with her and she was looking up at them.

Of course, I will never know during my time on this earth if this is true, but this is what I believe.

When I found out about Caroline’s diagnosis, I started reading.  I read family stories and research articles, and then moved on to books.  I started searching for evidence that heaven is real and that children have a special place there.  I have always believed in God, but the doubts creep in when your child is facing a fatal diagnosis and you can’t imagine why God would allow it.  This mother needed to know that her baby would be okay.  One book in particular really resonated with me.  It is called Touching Heaven: Real Stories of Children, Life, and Eternity, by Leanne Hadley.  In some ways it was a difficult read; it is written by a children’s hospital chaplain about her experiences with dying children.  However, I walked away from this book with some comfort that Caroline wouldn’t be scared when she left this world, and I don’t think she was.

Another book that I read about heaven was Proof of Heaven: A Neurosurgeon’s Journey into the Afterlife, by Eben Alexander, M.D.  The scientist in me was drawn to this account by someone who should be the biggest skeptic of heaven there is.  In the book, he describes his near death experience while fighting bacterial meningitis in a coma.  He argues that there is no way that what he experienced had anything to do with his brain, as it had essentially shut down due to the attack it was facing.

These books gave me some support and comfort, but I think the answer had been with me all along.  I have to think that there is a point to all this.  That there is a higher power and that souls are real and eternal.  Through my journey with Caroline, I saw the way that she inspired so many people.  I was upset that I would not get the time that I expected with my little girl, but she did more in 58 days than some people do in 58 years.  Her lifetime was short but fulfilling.  She showed me God’s grace.  I miss her so much, but I think she is happy and playing in the sunshine in heaven.

It is now my turn to tell her story and continue the work that my amazing little girl started.  I will look up, the way Caroline taught me.