Since I was little, Christmas has always been my favorite holiday. It is so magical and full of joy, laughter, and wonderful things. Christmas started early at our house. I remember walking home from the bus stop in November and as I approached my house, I saw my dad outside putting up Christmas decorations. I loved it. He always tried to put as many decorations on the house as he could: plastic santas, candy canes, lights on the roof, etc, etc. Each year he'd buy more and he would find a spot for it. Inside, christmas music was always blaring. My dad loved to listen to music and the holidays were full of christmas music. We always had a large tree with as many lights as my dad could fit on it and I couldn't wait to put it up. My mom would decorate the rest of the house including putting up my favorite, very old, cardboard fireplace by the tree. Candles were lit and Christmas cards were written. Cookies were baked and often I would go shopping late at night with my mom to avoid the Christmas crowds. On Christmas eve, we went to church together as a family. Inevitably, I would fall asleep on my mom's shoulder, only to be woken up by her poking me to stay awake. After church, we would ride around and look at the Christmas lights and when we got home we would maybe open up one gift from someone else. My brother would put on the movie the Christmas Story. And my mom would lock herself in the bedroom to finish wrapping all the gifts. I would try to go to bed early. I set my alarm and lay there with so much excitement about Christmas morning. My brother hated how early I would get up so he would come in and turn off my alarm while I was "sleeping." As soon as he would walk away, I would turn it back on. I'd eventually fall asleep and wake up nice and early to enjoy the magic of Christmas morning. I'd slowly creep into the living room, sit by the heater and stare at all the wonder underneath the Christmas tree. Eventually, I'd turn the tree on, pour glasses of eggnog, make my dad coffee, my mom tea, and run and jump on my parent's bed telling them to wake up! After about a half hour of coaxing my parents to get up and picking my brother's lock so I could pull off his covers and coax him as well, one by one they slowly got up and we began Christmas morning. Wishes were granted and there was so much joy with each unwrapping of gifts. My memories of Christmas are priceless. If you would have told me when I was little, what Christmases would be like as an adult, I wouldn't have believed you. No, in my heart and mind, Christmases would always be the same magical thing that they had always been. In fact, even into college, I was jumping on my parent's bed nice and early to try and conserve as much of the magic of Christmas morning as I could. But as life would have it, I have grown up and Christmases have changed. I notice myself desperately trying to recreate as much of my past as I can because those memories are full of so much joy. Moving out, getting married, and having a child means change and new traditions. I always knew that when I had kids, I would have to shift into creating the magic for my child and always hoped that I would love that experience just as much and find it just as magical. But, I find myself struggling to make new traditions and magic when life keeps throwing challenges in our face. Three short years ago, Brian and I headed to my parent's house on Christmas morning. We had already shared with Brian's parents on Christmas eve that we were expecting little Madelyn and we would be telling my parents on Christmas day. My dad hadn't been doing well and was in bed all day. After the rest of the family had left, we shared with my parents that we were expecting. That was the last big milestone of my life I got to share with my dad before he died. He was laid up in bed, in my old room, on Christmas Day. Seeing my dad so sick was very sad. Very different than the Christmases of my childhood. But he was happy that I was having a baby and I was happy that he knew. My dad passed the following March and a lot of Christmas magic seemed to die with him. After all, as all parents who celebrate Christmas are, he was my Santa, who spread the love and magic and hope of the season along with my mom. Two short years ago, on December 12, we were in the hospital with our 4 month old receiving her genetic diagnosis. Not exactly how I thought I would be spending my daughter's first Christmas season. A week later, I got a phone call from my brother that he was diagnosed with Leukemia. Then it was Christmas. My daughter and my brother were sick and my dad was gone. That was a very sad Christmas, indeed. I remember desperately wanting to skip Christmas that year. My brother passed the following July. Trying to find hope and magic during times like this was difficult. I found it in the people around me. People who shared their love and kindness in the spirit of the season. One short year ago, we were still grieving my dad and brother. I was still grieving Madelyn's diagnosis. Again, Christmas was a tough time, but it was slightly better than the year before. We celebrated because that's what you do. I know it still wasn't easy for anyone. But I knew I needed to start to spread magic for my daughter just like my parents did for us. I just didn't know how with all of her special needs. Instead, people continued to spread the magic and generosity to us. And then there's this year. Though nothing significantly bad happened this year (thank goodness), I'd say we're all still grieving the losses in our family. Christmas isn't so magical for me, though I desperately want it to be so. In the weeks leading up to Christmas, I found myself stressed and my heart aching. The holiday season has been stressful with Madelyn's surgery, hospital stays and uncontrolled seizures. Again, I find myself struggling to let go of the magic from my childhood and trying to find ways to spread the magic for Madelyn, who doesn't know what is going on yet. I want so badly for her to have the happiness that I had. She's older now and should be running around playing with her cousins. She deserves the lights, the cookies, the songs, the parties, and the greatest gifts. I want to see her face light up when she opens a gift that she wants. Instead, selecting gifts for her is one of the most stressful things. Everyone asks us what to get for her because they realize her limitations and want to get her something she'll use or enjoy, but with that question comes the reminder that she's not a typical kid who can play with typical toys. I try to get creative, but the truth is we still have gifts packed away in the closet from birthdays and Christmases of the past waiting for the moment when she can play with them. So, often gift ideas become clothes or books; at least I know she enjoys books. I did my best this year to include her in things that I loved like showing her the lights outside, decorating the tree, playing christmas music, having her cut out a cookie, and trying to make her unwrap presents. I want her to learn and I want her to enjoy it...liked I did. We didn't make it to see Santa this year for a variety of reasons including her recovery from her surgery. Seeing Santa isn't necessarily a big deal at her age, but again, it is all part of the magic of the season and laying that foundation. One of my favorite things that I chose to do with her this year was wrap up christmas books and open one each evening to be read before bed. We always do story time before bed and she smiles as I go to pick out the book, so I felt that this might be a way to start a tradition that she would enjoy. She certainly enjoyed mouthing on each book before we would read them :) And I enjoyed being able to do something with her. Because of her seizures, it was hard to stay present and focused on the spirit of the season. Christmas eve, we woke up at 6 am to a seizure and went to bed to a seizure. Madelyn has been more sleepy, likely because we found out she is having more seizures through out the night that are likely making her tired and impacting her sleep. Christmas night, Madelyn had a couple seizures, triggered by noise and sleep. Telling your family to keep it down because the noise triggered a seizure for your daughter sure is not part of the Christmas magic. I wish that for Christmas she could have a break from her seizures. One gift I would love to give her, but I can't. As I struggle to find the magic of the season, I realize that the people around me continue to spread the love and hope of Christmas. One of my favorite things is getting Christmas cards from old friends and family and hearing sweet news like families growing. Connecting, sharing, loving, spreading love and hope. As I've said before and I'll say it again, people are so good to us and this time of year, it is even more so. Madelyn has received many donated toys from the hospital and from her school. And we have received amazing gifts. One of my other favorite things of the season is the candelight Christmas Eve service. During this service, I'm reminded of the true reason for the season. The true magic. The light of the world. The hope that comes along with it. The only things that truly matters. As I navigated through another holiday, I realized that while I am so desperately trying to create magic for Madelyn, it is she who is filling up the magic for me. Not in the ways that I expected when I would have a child or in the traditional ways, but because she is one of those special souls. She's expressive and silly and engaging. She is waving and clapping and giving kisses. She is eager to eat by mouth and drinking eggnog from a straw. She had chocolate pie and mashed potatos by mouth and reached for more. She's cuddly and sweet and blowing raspberries. And she's smiley and full of joy. Not temporary joy from presents, but a joy that truly matters. She doesn't need all that other stuff to find magic. She was created by the light of the world and I believe that He continues to work through her to spread His light. For me, as the magic of the season fades, the magic of Madelyn lasts forever.
1 Comment
Patty Ball
12/28/2016 12:21:48 am
Beautiful Kristen. It will never be the same but our memories last forever. So continue to make those beautiful traditions with Maddie & Brian. ❤
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AuthorHi, I'm Kristen! I'm a mother of a beautiful, but rare little girl and the wife of my best friend. I have decided to share my experiences on this journey in hopes to help others understand or help others in similar situations. :) Archives
October 2017
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