January - My grandmother's cancer was spreading and her treatment was becoming more intensive. My mom made the decision to take a leave of absence from work to be with her out of town. Aiden's babysitter two or three days a week and the person I was hoping to help me get ready for our sweet little girl was gone (with good reason). At six months pregnant I joined thousands of people in the city in fearing for my safety (and truthfully life) with the coming of the Snowpocolypse. It is easy to laugh about now, but this city saw something so unexpected it rivaled the weather in The Day After Tomorrow. In the span of an hour I went from admiring the view of small flurries from the safety of my classroom window to sitting in my car on streets covered with snow and ice, wondering where I would ditch my car and how far I would have to walk to safety, dressed in clothes and shoes that were NOT snow-appropriate, all the while knowing my options were limited by the little life inside me. 6 hours, one car wreck, ditching my car and walking about a mile to meet Matt, ditching his car, and another hike later, we made it to our son's school where we were reunited as a family and happily spent the night on his classroom floor.
A quick picture of the three (really 4 if you count the 7 month belly) before we went to sleep for the night on the floor of the dayschool.
A picture of Aiden in the snow after we made it home the next day
Then the next week in January brought more rattling news, news we had all been dreading, but knew was coming one day: there was nothing more the doctors could do for my grandmother. The cancer had spread and her body was not fit for the aggressive treatment it would require. So she was discharged from the hospital and sent home under the care of Hospice and my mom and uncle.
February - Matt and I knew our time to prepare our family for our new addition was growing short, but so was the time we had left with my grandmother. Matt and I sat down and made the decision one night that we would have the rest of our lives to make Baby Sister the cutest room, order her furniture, and buy the things she needed, but our days with my grandmother were growing fewer. We decided would drop everything and spend as much time with my grandmother as possible. So that's what we did. Every weekend that month we packed up in my sister's car and headed out of town to be with my mom and grandmother and uncle. That took a toll on my body, which swelled terribly from the time crammed in the car for the trip, and made it tough to function during the work week without the weekends to play catch up or even make weekly runs to the grocery store. By this point, Baby Sister was kicking hard enough to feel from the outside. I am blessed that Grandmother was able to lay in her bed with her hand on my belly and just feel her kick, all the while praying that she could hang on long enough to see her born. Each trip grew harder as her moments of clarify and strength started to drift away.
A picture of daddies and kids feeding the ducks at the lake outside Grandmother's house on a Sunday afternoon
March - My doctor told me that she could allow me to go out of town until 36 weeks, but then I was to stay put. The trips were tougher on my body than I let on and we all knew the first weekend in March would be the last trip I would make until she passed - we knew there was no way she would hang on until Baby Sister's birth. The family would continue to go - but this was it for me. She smiled with her eyes closed while she felt Baby Sister kick. Before we left Matt and I were able to ask her if we could use Hayes - her maiden name - as Baby Girl's middle name. Her words were, "I would be honored." We still had not decided on Baby Girl's first name, but Matt and I had already made the commitment that whatever it was, it would match with Hayes. I think she knew it was my last visit too. We hugged and told each other that we loved each other. She told me to take care of Aiden and the baby to come - to love them and raise them to know Jesus. She told me she was so proud of Aiden and how smart he was and that she was proud of me. After more hugs, I was barely able to make it outside before the tears came. I have never knowingly said my last words to someone and look back now thinking of all the things I wish I had said or said again. She died three days later, quietly in the night, surrounded by my mom and uncle. I would make the trip up for the funeral - allowed only to stay the day. I was overwhelmed with a feeling of helplessness - unable to be there for my mom, unable to grieve with my sister, unable to help with plans and arrangements.
Collecting flowers from Grandmother's grave after the service
I tried to turn my attention back to school and preparing to leave my kids with a maternity sub (who had yet to be hired). Three weeks later, I went into labor and Baby Girl arrived in the middle of the night - a week early. We had her perfect birthday planned - a lunchtime C-section on Friday, 4/4/14, but she clearly had her own plans.
My last pregnant picture - heading to the hospital around 11:00 p.m.
Norah's arrival in the middle of the night
Our first picture as a family of 4 the next morning
Sweet Baby Sister
First picture with big brother and little sister
We still had not decided on a name for her, but had a short list ready. On the third night in the hospital (and much scolding from the hospital rep in charge of her birth certificate and Aiden just telling his classmates at school that we had named her Margo) we HAD to pick a name. We couldn't decide between Brooklyn - Matt's favorite, Cailyn - my favorite girl name from my pregnancy with Aiden, and Norah - a derivative of Noah, the boy name we had picked. We could not decide, so we started using other means to come to a decision. We said them out loud, we wrote them each out to see how they looked, and then we went to their meanings. Norah: Honored. My grandmother's words when we asked her if we could use Hayes as her middle name. "I would be honored." The decision was made. A few short days later, we took Baby Norah home!
April - After a month of extremes - extreme low to extreme high for the entire family - we were eager to focus on being a family of 4. Life was good. We had a beautiful, healthy little girl and a little boy who was SMITTEN with her!
May - May was as close to normal as our family got. Maybe the calmest month of the year. There was another bout of mastitis in there, but otherwise a fairly normal month. However, as we went in for check ups with Norah, there was growing concern. While her birth weight was good, Norah continued to lose weight each week. We were instructed to bring her in for weekly weigh ins with the nurse to monitor the situation more closely.
June - June brought another semi-normal month. There was another bout of mastitis (#3 if you're counting) that forced me to cancel Aiden's third birthday party. Norah's check ups were still not perfect - she was not gaining the weight she was supposed to and was still not back to her birth weight yet. She was on a strict schedule and we were still setting an alarm to wake her up to feed through the night and going in for weekly weigh ins.
Aiden's Construction Birthday Party (a few weeks late)
July - We went on vacations with the families at the beach. Lots of great times and lots of great pictures! However, life was turned upside down the week we returned and went in for Norah's 4 month check up the last week of July. Despite altering Norah's diet eat week - giving her more milk, giving her formula, giving her each every day, Norah's weight had reached a dangerous level - she had dropped off the growth chart and started sweating severely when she ate. After many questions by the pediatrician and giving (what seemed like) all the wrong answers, Matt and I finally asked what was going on. He said all signs were pointing to something more serious - potentially cystic fibrosis. He said she was a "classic textbook case." His words were "if a med student was taking his boards and given her symptoms and medical history, the answer they would be looking for is CF." We were immediately referred to Children's Hospital to see a GI specialist and to cardiology. All the while, I started getting sick again. I was covered in small, round sores or scales from my chest down. My stomach was covered, my back was covered, my legs were covered. Despite the southern heat, I wouldn't wear shorts - only pants - so no one could see my legs. My hair started falling out. Now, this is normal for postpartum women - no surprise there, I did it with Aiden - but this was different. Clumps everywhere.
August - August was a complete blur. My maternity leave was at an end and I should have been focused on getting ready for school to start, but walking away from Norah was the last thing on my mind. We were at Children's Hospital almost every other day for testing - sweat tests, x-rays of her organs looking for an enlarged heart, blood work to check her thyroid levels and other things, ultrasounds to look at her organs - anything that might give us answers. We were driving down urine and stool samples almost every other day. I was starting to see doctors to find out what was going on with me - first my OB and then to a dermatologist. The OB said the excessive hair loss was stress - all my blood levels were fine. The dermatologist took one look at my skin, which was now covered in hundreds of small, open sores rather than scales, then asked to see my fingernails. I found that a coincidence - I had noticed they were different, a deep indention in each at the same spot. She immediately asked how recently I had strep. I told her it had been years, but after then going back through the events of the past few months, she told me I also had a severe form of strep back in April when I went into the hospital that had gone untreated and remained in my blood stream and was now causing this rare form of psoriasis. Given the past few months, I figured that sounded about right. However, the medicine was a strong steroid and since I was nursing, could only be applied to EACH INDIVIDUAL sore twice a day. Sure, I had plenty of time to dab this cream on hundreds of open sores twice a day and let it dry. Yeah, right. I continued on, spotted and growing balder by the day, avoiding shorts and dresses and fixing my hair any way I could to cover the bald spots. Tests for Norah continued to come back inconclusive. She was not failing them miserably, but she wasn't passing them with flying colors. There was still a big question mark in the air. What I didn't understand was why cystic fibrosis? I had heard of the illness - I had a student about a decade ago whose sister suffered from the illness and actually passed away during a routine operation related to CF. But that was a respiratory illness, right? Not something related to weight? I needed answers. So while sitting in my classroom with beginning of the year stuff around me, I turned to the internet. I found reliable sources - Mayo Clinic, etc - for my answers. And there on the screen was my greatest nightmare - an average life expectancy of 19 years of age. I couldn't take it any more. The thought that one day I might have to bury my daughter was more than I could handle at that moment. I curled up on the floor and cried. It was a feeling of complete helplessness and hopelessness. I had been strong for so many weeks, but now seeing this in print in front of me was too much. I needed help and I needed comfort, so I turned to a friend I worked with. I texted a coworker in the building and she came down to find me still on the floor. After letting me cry and talk, she gave me the kick in the pants I needed. She reminded me that Norah isn't mine - she is God's. She ultimately doesn't belong to me, but to God. God chose ME to be her earthly mother, He chose me to be her protector, but ultimately Norah belonged to Him and only He would make Norah perfect and healthy. She reminded me that we don't know God's plan for our lives, but we worship a god that had already conquered death. Worrying about Norah's health and thinking that there was something I could do to make her better was not trusting the Lord - not trusting that He knew what was best for her and that He had a plan for her life and for mine.
Life changed for me after that conversation. I started spending more time in prayer. I started taking each day as it came and just trying to make it through that one day - stop worrying and looking ahead. A little over ten years ago God placed a little girl in the very first classroom full of 6th graders I would teach. In January of that school year, her sister was taken from her family and called to be with God. From what? Complications during a surgery related to cystic fibrosis. My faith was tested then because I was angry with God. It was the first true test of my faith at that time. I didn't understand why God would take someone so young, someone who was making the world better. But it took that student - a little 11 year-old girl to show me an unshakable, unbreakable, everlasting faith in the Lord. In the next few days I spent visiting her at home, attending the visitation and funeral, and her return to school, she showed me a faith in God and His promises more clearly than anyone had to that point in my life. Over the next few days she showed me the faith I needed to have. An 11 year-old. I have carried the things she taught me for over a decade and man, have I needed them now. A little over a year ago a friend of mine from college lost her little boy suddenly in the middle of the night. No warning, no illness. With a toddler and a little one on the way, I struggled. I struggled in my own faith. I prayed for my friend and her family and I watched her strength in leaning on her family and her faith to get through it. I am not sure there is a day that goes by that I don't think of her and her son and I continue even now to see her strength, even though I don't get to talk to her in person. I always questioned if my faith was that strong and God must have wondered the same, as I am being tested now. Over the last few months I have watched a mutual friend of mine and Matt's lose their little boy - just a few months old. I have watched her unshakable faith in the Lord to get through what is no doubt the hardest time in her life. I have found strength from each of these ladies in their ability to completely turn over their trust and worries to the Lord. I am grateful for the strength these three ladies have shown to me and the example they have set in my life and so grateful to our Lord for hand-picking them to be a part of my life.
Our last few months have been more enjoyable. I am getting more sleep, and my hair is even starting to grow back slowly (although only a few inches, it sticks out everywhere and I still struggle to hide it). Despite 5 rounds of mastitis, I am blessed to be able to still provide for Norah and pump multiple times a day. By this point it is becoming painful and uncomfortable and sometimes a inconvenient hassle, but I am thankful to be able to feel like I am doing my part to help Norah and keep her healthy and that makes it ALL worth it. Norah's appointments have gone better each visit and I am happy to say that she is even on the growth chart now. There are still days that are a struggle, as I am sure that every family has. But those are the days I pray the hardest. The doctors have said Norah may just continue to be a "medical mystery" and we may never get the answers we set out to find. I know now if we do get them, it will be in God's time.
Norah's appointment last week at the hospital was one of the last ones for a little while. The specialist feels she is doing so well that he is turning us back over to our pediatrician. She is gaining weight slowly and hitting all the developmental milestones expected. While this is the best news we could have asked for - especially this time of year - this is the only visit that I have cried. I'm not usually a crier, so this threw Matt for a loop, especially since it was good news. I told Matt I just didn't understand why I was getting to leave the hospital with a perfect little girl while my other two friends didn't walk out with their little boys at all. Again, I am reminded that I am part of God's perfect plan and I have to have faith. I have to trust that He knows what is best and that I need to focus my life on being a living testimony for Him. I am to live in a way that other people see Him through me.
Norah at Children's Hospital in front of the Christmas tree in the waiting room of the specialist's office
I walk into 2015 a changed person. I am not the same person that I was this time last year - not the same mom, not the same wife, not the same teacher. I am a control-freak and want to do something with 100% of my energy and attention and that just hasn't happened this year. I am a perfectionist when it comes to my job and sometimes a borderline workaholic. I function under the rule that if I want it done right, I have to do it myself. I know now that all of these things have kept me from having the relationship with God that I need to have. I CAN'T do it all (man, it even hurts to type the words out) and I certainly can't do them on my own. I NEED God's help. I realize now that my own stubbornness to think what I can do is best is a lack of faith that God knows best, that God will provide, and that God is in control. I have had to ask for help a lot this year (NOT an easy thing for me to do) and I have had to depend on others for help this year (again, NOT an easy thing for me to do). I have depended on my husband more than I like, along with my parents, coworkers, and some friends, to get things done that need to be done. Asking for help each time has been difficult, but I am slowly learning to trust.
This year has certainly brought a dose of reality for me. I used to turn my nose up at the teacher that walked in in the morning as the kids walked down the hall. (Guilty) I used to scowl at the mom who bribed her kids to be good while out running errands. (Guilty) Shake my head at the mom who sent their child to school unknowingly with a fever. (Guilty) Roll my eyes at the mom who forgot to send their child to school with lunch. (Did it) Raise an eyebrow at the person who left the house in shoes that didn't match. (Yep, been there) I've learned that I don't know what everyone is facing when no one is watching. I've learned that single moms deserve a medal. I've learned that it certainly isn't my job to pass judgement, but to pass on compassion and understanding. I've learned to be more sensitive to recognizing when others may need help, although they may not say it. I carry all of these lessons with me every single day.
I may never know the answers to all my questions from this year. Why couldn't Grandmother make it just a few more weeks to see Norah? Why so much sickness? Why did Norah struggle so much in gaining weight? 2014 has taught me to stop dwelling on the questions, but to focus on the here and now. There is no doubt that I will continue to think of my grandmother every day this coming year, but I am blessed in the time I had with her and the time she had with her great grandkids. I am blessed with 2 amazing children and the chance to be their mom every single day. In 2015 I will hug my kids tighter. I will trust more. I will pray more. I will help others more. I will confidently go into 2015 knowing that I can do ALL things with Christ who gives me strength.