Sweet Caroline

Sitting here just watching her sleep- it is so hard to imagine my life without her. And not just in the “life before kids” way- going and doing as you please and being able to sleep all night long- but in the sense of just giving my life so much purpose. I truly can’t put into words the change she has given my life. I have always wanted to have kids and knew my life would change, but I had NO IDEA the type of change it would bring.

Now if you don’t know Caroline- which most of you reading this blog do know her- I will give you the spark notes version of our journey with Caroline.

At 22 weeks pregnant, after one miscarriage, we went to our ultrasound to find out the gender of our sweet baby. We were ecstatic- we had made it this far and were excited to think of names and decorate for the new baby. Little did we know (and honestly now looking back- we had no idea!) just how much our lives would change.

We were planning to let it be a surprise, to us and everyone at our gender reveal party waiting for us that evening.  But after the long ultrasound and the doctor requesting we see him afterwards, we knew something was going on. We decided to find out the gender because we needed confirmation that things were OK- and somehow finding out the gender would provide us some comfort to the upcoming news.

The ultrasound, as the doctor told us, revealed concerns- fluid on the brain, possible clubbed foot, and Spina Bifida. We literally found out all of this information, including the gender, 30 minutes before our gender reveal party was planned to happen.

 Oh my heart was broken.

Now, I can spend a lot of time reflecting on the feelings and emotions of that exact time. It literally was the day that turned our world upside down and changed everything for us as a family. In one single day- everything was changed. I know some people have a time in their life that they can recall a single minute, or hour, or day that changed their whole life- mine was that day.

After a major breakdown outside the doctors office, my husband and I pulled ourselves together because we had a gender reveal party to go to. It was supposed to be such a special day- to find out the gender- but my heart was aching. I honestly have no idea how I did it- I didn’t share any news from our appointment-  just the fact that we were going to welcome a baby girl to our family.

We had a long pregnancy- or so it felt. I mean I loved being pregnant- I felt great and it felt special- but I carried so many worries with me. We saw many specialists at UVA and by the last 8 weeks of pregnancy, I was being seen once a week at UVA and twice a week locally by my OBGYN. I was READY for our sweet girl to arrive. We had so many concerns and unknowns about her up until the day she was born.

It was Thanksgiving Day, about to have lunch at my parents that my water broke. Literally- standing there talking to Jeremy- the whole movie-type water-breaking episode and it was instant panic. We went to the local hospital, was transported to UVA for an emergency c-section and Caroline Leigh Robertson arrived at 5:09 P.M. as the most beautiful and precious little girl. She was whisked away to the NICU as soon as she arrived and would stay there for 39 very long days.

Those NICU days were tough- tougher than anything I have ever done in my life- and I won’t go into that now, that is a whole other post. But we survived and brought her home on January 4^th.

Fast forward 4 years and here we are. I had no idea what our life would be like. I had many dark days and SO many days of unknown but somehow, it has all worked out. I mean, doesn’t it always? In some weird type of “can’t even imagine it” way- because I was convinced at one point that I couldn’t do this- I wouldn’t be able to take care of her. And here I am- loving being her mom and just how much she has taught me.  Our life is different none the less, but I believe it is extra special.

Caroline was in fact born with Spina Bifida. She had to have a 6+ hour surgery when she was less than a day old to close the opening in her back and she also required a shunt to drain the fluid from her brain. She also has extremely low muscle tone- she cannot sit up, stand, crawl, or walk nor do we know if she ever will. She does not talk but makes several noises and loves to giggle and laugh at us. She also lets us know when she is upset or angry- as she can scream (trust me, the girl can let us know when she’s not happy!). Her personality shines in so many unconventional ways and I think that is why I love her even more! She is so special.

We have been learning to navigate this life with her. It has been a learning curve for us, no doubt. The decisions we have had to make and the things we have had to learn in order to care for her, it has been challenging at times but, also satisfying knowing we can do it. We have learned how to care for her- how to provide her with the things she needs- all the while learning and loving our sweet girl. It’s been a special journey. She makes us step back and enjoy the little things in life- to always celebrate the “inchstones” instead of the “milestones”.

We are in the process of making some changes on the next “season” of our lives. Everything about this has been a learning-as-we-go process and deciding what is best for all of us. But I know we will continue to grow and hopefully do what is best for her. Our sweet girl keeps us on our toes and we know that our life with her has become “always an adventure” - which is our family motto- just making lemons into lemonade!