As I reflect on 2013, I remember a particular day last January during one of Callie Anne’s 5 hospital stays of the year. We had spent last New Year’s at Mercy Hospital. David had to go to work, so my amazing friend, Jodie, came by every morning during her Christmas break to bring me breakfast and so I could take a shower. On this day, when she walked in, I was sitting on the couch in the hospital room holding my 4 week old baby girl with my computer on my lap and crying my eyes out. Not just a few tears streaming down; it was like the ugly cry. It wasn’t until this hospital stay that I had began researching Apert Syndrome and connecting with other families. Until then, we were just trying to survive and really had no idea what we were dealing with or what was in our/her future. After finding the Apert family support groups on Facebook, I came across someone who is a dear friend now. I had spent most of the previous night reading through Kerry Lynch’s blog about her daughter, Mary Cate. It was that morning that I realized what 2013 was going to be like for our family. While it was comforting to know that this family had made it through, so we could, too…it was beyond overwhelming and, frankly, scary as hell! Here is our little family exactly one year ago.
Little did we know, this was the beginning of what would (hopefully) be the hardest year of our lives. However, it was also the most rewarding in so many ways! David and I are much better people today than we were just 1 short year ago. We are more faithful, more kind, more giving, and so much more patient. We may not have been handed the easiest life, but there is no doubt in either of our minds…we were absolutely handed a life that is better than we could have ever imagined! Here are just a few of the things I learned in 2013.
I would not say I was an unkind person prior to 2013, by any means. However, I know for a fact that I’m much more kind today than I’ve ever been in my life. One of the zillions of gifts God gave me when He gave me Callie Anne is a heart that sees something special in people that I may not have taken the time to see before. I find myself thinking before I speak or judge much more than ever before. When I see someone who is different than me in some way, I almost always take a moment to imagine their story. Every single person is the most important person in someone’s life. They have so much more to offer than is ever apparent at first glance and deserve the opportunity to let that show. Can you imagine a world where everyone took a minute to think, “What is the most kind way to say this?” before they spoke?
I’ve always been a Christian, but I’ve not always been one who prayed regularly. I just didn’t take the time to do it. Since CA came into my life, prayer has become part of who I am. There have been so many times that I didn’t know how to pray. My heart hurt too badly or I was too scared, too confused, too overwhelmed. In those times, I find myself just “being” with God. I don’t always have to have a “sermon worthy” prayer to pray. Sometimes, I just say, “Be with me.” My heart and soul have changed so much in the past year and prayer has been a large part of that.
I can only assume that all moms feel this way about their daughters, but I am just head over heels in love with this girl! I’ve never known anyone, especially someone so young, who is as strong as my Callie Anne. She already, at the age of 0ne, has a sense of wisdom in her eyes. She has been through so much more than any baby should have to go through, and yet, she always perseveres. She never has the “poor pitiful me” attitude. She just stops, regroups, and keeps going with whatever she has available to her at the moment. We could all learn a lot from Callie Anne Cook! I can’t wait to see what else she has to teach me!
I’ve always loved this quote from Maya Angelou, but it means so much more to me today. We’ve met more doctors and nurses in the past year and a half than in the total of both of our lives prior. One thing we have learned is that being a doctor or nurse is a true calling. The ones who make you feel good, safe, comfortable, are the ones we love to remember. And the ones who were less than friendly, didn’t respect our roles as parents, or let their egos get in the way are the ones we will always remember, but for other reasons. I don’t remember the names of every nurse who has taken care of Callie Anne so far, but I can picture them in my mind, remember specific things they said or did, and absolutely remember how they made me feel. In each of her surgery photo books, I include pictures and names of nurses who were part of our journey. Being in the hospital with a child is never easy and nurses are the ones who can make it or break it. Luckily, most of ours have been more than wonderful!
My mom and I have always been close (well, except for those teenage years…). She’s the strongest and smartest woman I know. But, it wasn’t until I became a mother that I truly understood the connection between a mother and a daughter. When I got pregnant, I knew my mom would be a huge part of my life as a mother, but I never knew how much I would need her. More than how much I need her is how much she is willing to give. I never have to wonder if she will be there for me, she’s just always there. It’s like my pain is her pain, my struggle is her struggle, and my joy is her joy. I guess it’s always been that way, but now I can see it and appreciate it. If I can be half the mother to CA that she was and is to me, I’ll be happy!
David and I were married in September 2011, and pregnant with Callie Anne 6 months later, as planned. We were ready to be parents. What we didn’t take into account was that we probably could have used a little more time to experience life as a couple, but we are still extremely happy with how it all turned out. The first few years of marriage are hard no matter what! Add a baby to the mix and it’s even harder. Add a baby with special needs and you’ve really got the odds stacked against you. It’s very difficult not to take your fear, exhaustion, heartache, worries, and frustrations out on each other. We’ve learned that the hard way, but we’re making it because at the center of our marriage is always our faith. When the days are really tough, we try to turn to God because we both believe with all our hearts that He meant for us to be together, so He will help us through no matter what. We have learned a lot in the past year about how the other handles scary and stressful situations. And it is in those times that I fall even deeper in love with my husband because I see the strength he brings to our family as a husband and father. We spent this New Year’s Eve alone together recharging for 2014 and our goal for this year is not to take each other for granted and remember to nourish our marriage as much as we nourish our daughter. It’s not easy to take time to just BE together when your life revolves around your child’s medical needs, but in 2013, we learned how important it is.
Not all of our days in 2013 were enjoyable. We had scary days. We had painful days. We have days full of heartbreak and days full of worry. But, we also had days full of joy, success, and pure love. It was those days that made the others worth it. One of the big lessons I learned this year was to be grateful for every single day you are given. Recently, we spent 4 days in the intensive care unit in Dallas with Callie Anne and a couple of those days were just downright terrifying as a mother. It wasn’t our first time in ICU and it won’t be our last. That’s just the way it is. But, in the end, I thank God for those days. I have more friends than I can count on both hands who would give anything to be spending the day with their child in ICU because that would mean their child is here on earth with them. Let us not forget that there is always someone who is hurting more deeply than we are. That certainly doesn’t mean that we don’t deserve to feel the emotions that come with those bad days. I’m the first one to close the door and have my own little pity party. But, when I’m done, I try to think of those dear friends who can’t hold their child and have to wipe their own tears that have fallen from the top of their child’s head, and I always try to stop and say a prayer for them. We are all fighting our own battles and I’m grateful to be here and to have my family to fight them by my side.
Before we found out there was something “different” during my pregnancy, I was halfway through graduate school and teaching full time. I’ve always been the kind of person that tries my hardest and goes the extra mile. I never slowed down and always had a much too full plate in life. I took a break from graduate school, knowing the rest of the pregnancy would be tough. It was October 2012, when I was 32 weeks pregnant and my doctor told me I couldn’t go back to work. My blood pressure was much too high to be on my feet teaching 4th grade all day. I fought her tooth and nail and even negotiated half days for about a week when it was still too much.(I wish I knew then what I know now…work is just work and can wait) I spent the last 6 weeks of my pregnancy either in bed, on the couch, or laid back in the recliner. My life changed that October in so many ways. I planned to return to work 8 weeks after Callie Anne was born, but that didn’t happen either. I haven’t been back to work since Oct. 2012. On Monday, I will be returning to the classroom to teach 2nd grade. I have so many mixed emotions about it. On one hand, I’m so ready to have a life outside my house and something else to obsess about. I’m also craving adult interaction and need a distraction. But, on the other hand, I can’t imagine not cuddling with my baby girl every morning and being right there for every new thing she does or says. (I’m sure some will be glad for that because I won’t be filling their Facebook feeds with pictures of every move she makes! ) I will always cherish the 13 months I’ve spent being at home with her, but I know it’s time to get back to work and for her to go to daycare and have more social interaction. 2013 was a unique kind of year for our family and one that will never be repeated. The coming year will be different in every way. But, it will be in every way that we all need. God knows what He’s doing and has shown it in every single minute of our lives since CA was born. We know He will continue to lead us into 2014!
So, as I think back to that morning in January of 2013 when I cried and cried over the thought of all we would have to go through during the coming year, I realize that we made it! And not only did we make it, but it’s been the most rewarding year of our lives! Thank you for being part of it!