Mothering Caroline Grace

learning how to be the mom of an angel


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Turkeys and Shoppers

Today is the biggest shopping day of the year, which means that my husband is hard at work.  I am instead at home, sitting at my computer with the heated throw that my husband got me (I’m always cold) and sipping on some hot tea.  I have homework to do that I’d like to get done before he gets home, but first I will write.

Thanksgiving was a hard day, even though on the surface it was a lovely day.  We slept in, ate a big breakfast, took a nap together, went out for dinner, and then watched football before going to bed early.  It was a bittersweet day that I did enjoy but went to bed sad, wishing I had needed a high chair at dinner and could have dressed Caroline in a turkey outfit.  Instead, we decorated a small Christmas tree for Caroline and put all of her ornaments on it.  There is a void in my heart that cannot be filled by anyone but her.

Thanksgiving is one of my favorite holidays and this is the first time it has been both happy and sad.  That is the reality of being a bereaved parent – you are always a little happy and a little (or a lot) sad.  The two emotions coexist in a way that was never possible before.

I am so thankful for my daughter.  She has taught me so much and led the most meaningful life.  She helped me to believe in miracles again and inspired so many wonderful things.  She made me a mom and for that I am forever grateful.  I love her so much, always and forever.

I am also thankful for my husband, who has been my rock of support through the best and worst year of our lives.  If not for him, I surely would have quit my program and abandoned my life here.  He is my shoulder to cry on and my inspiration to keep moving forward.

Yesterday, me and the husband were talking about long lines for store openings.  I have never been one to go out shopping on Black Friday – I hate crowds and long lines.  However, I thought that there was one person I would have braved the crowds for – Caroline.  Or another child someday.  If there was some toy that my child wanted for Christmas, and the only way I could afford it was to go out on Black Friday, I would do it.  Being a mom drives you to do things you never would otherwise, because you love your children so much and would do anything for them.  If I could have died for Caroline so that she would have the chance to live a long life, I would have in a heartbeat.  However, I was not given that option.  For some reason, God wants me to stay here while my baby is in heaven.

All I can do now is try to keep moving forward, making Caroline proud when I can.  I anxiously await the day when we are reunited and the void in my heart is once again filled.

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Memory Monday

After Caroline was born, doctors told us that the first 24-48 hours would be telling.  Changes happen with the heart after birth that were likely to be severe for Caroline.  However, she remained stable through that time.  This was one of many, many miracles that we saw because of her.

I had written in our birth plan for Caroline’s heart defect to be confirmed if she lived longer than expected.  We reached that point, but then became uncertain when asked if we still wanted the test done.  The doctors thought that the prenatal testing was valid and were not sure what we would gain by having the test repeated.  We decided to take Caroline home, love on her, and decide about the heart echocardiogram later.

At two weeks old, we decided after much deliberation to schedule Caroline’s echo.  We wondered how it was possible that she was still doing so well, and suspected that her heart defect was not as severe as thought prenatally.  We didn’t want to put Caroline through any more tests than were necessary, but this one was not invasive and would let us know what was going on and if we needed to make any changes to her treatment.  The deciding factor for me was when I asked her pediatrician if she felt comfortable treating Caroline’s symptoms without input from cardiology, and she said that she would feel much more comfortable if they were consulting on her case.  It was time to find out what was happening with Caroline’s heart.

We took Caroline, all bundled up, to the hospital for the test.  I remember it being a very windy day.  We covered Caroline’s car seat in her pink blanket with ballet slippers printed on it.  We arrived early and got inside quickly with her stroller to escape the wind.  Before Caroline’s appointment, we planned to visit the nurses who had taken care of us weeks before on the labor and delivery floor.  They were all amazed at how much Caroline was eating (15 ml every 3-4 hours if I remember correctly) and how well she was doing.  She followed them with her eyes as they swarmed around her, taking in the miracle baby.  We took pictures with the nurses and it was another one of those moments that validated me as a mom; I got to show off my precious newborn and have her met with nothing but smiles.  I am so glad that Caroline got to see all those smiles.

We then went back to the outpatient wing for Caroline’s echo.  They gave me a hospital wristband for her when we checked in, but since she was so small they told me to just hold onto it.  We were soon called back for the echo.  Two women performed Caroline’s scan, and the results were then sent to a local children’s hospital so that a pediatric cardiologist could read them.  Caroline LOVED the warm gel on her chest.  As the tech performed the heart ultrasound, she fell asleep on her mommy.  The tech commented that Caroline was the most well-behaved baby she had ever had for the test – most babies end up screaming and protesting.  Caroline was so easygoing and sweet.

The test took much longer than expected, so Caroline’s daddy had to leave for work before they gave the results.  I talked to the cardiologist and found out that Caroline still had a double-outlet right ventricle (DORV) heart as well as complex problems with her circulation.  I had some hope that the scan would show us that Caroline’s heart was healing, but those hopes were shattered.  Even so, I felt better knowing the situation and having cardiology in on the conversation of how to manage Caroline’s symptoms.  We took our daughter home and spent another amazing month with her.

I say this all the time, but everything about Caroline was a miracle.  It was easy to get discouraged and sad, knowing that your child has a condition with no cure and that any second could be her last.  However, God and Caroline kept me going through all of the tough decisions and heartache.  Having the chance to love Caroline was worth every second of heartache.  Being her mom is the best.

 


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My Mom Identity

I am Caroline’s mom.  Her death does not change that.

It’s not obvious to the world that I’m a mom.  I don’t have spit-up in my hair and I don’t have a stroller in the trunk of my car.  No one asks me about Caroline or how it is to be a new mom.  But I am.

I’ve faced what is probably the hardest challenge a mom can face.  To do everything you can to keep your child comfortable, and to hold her as she passes from this world to the next.  I did that for her.  My whole life led up to that moment – I was meant to care for my beautiful baby, surround her with love, and to tell her that she doesn’t need to be afraid.  I told her that she’d play in heaven and we’d see her again soon.

Now I will keep her memory alive.  Her life matters.  She was a true miracle.  It is an honor to be Caroline’s mom.