Welcome to life with Fragile X.
When I was growing up, we had the most fantastic holidays. All of them. I can't remember a single one that wasn't just the most wonderful ever. We had (and continue to have) tradition, family, laughter, love. We made the most incredible memories that to this day I cherish. Christmas was filled with the most.
I remember, like it was yesterday, striking up and singing Christmas carols for weeks with my mom at any given moment. Decorating the tree, with dad lifting all 3 of us girls up one at a time to put the angel on top. The lighting of the Advent candles every night at dinner while reading our message from the Advent book about the story of Jesus, that mom and dad would read when we were young. As we got older, we each took a turn reading a night at a time and leading the song that accompanied.
The excitement of writing letters to Santa, the anticipation of him coming and the wonder of if he would wake the dogs, alerting dad who would love to shoot a reindeer ;-) Cinnamon rolls were a post unwrapping Christmas morning tradition that we looked forward to before spending the day soaking in our gifts. As we got older and questioned if Santa was real, we were always told "As long as you believe, he will come" - that alone was enough to never make it a discussion. Even as a young adult, when I came home for Christmas, Santa would still come visit. While at the time, I didn't understand why my parents would make the effort for their grown children - as a mom, I certainly now do.
The memories from home were amazing, I still look back and smile when I think of them - they will always hold a special place in my heart.
Christmas Eve though, that holds the most special place in my heart and where the longest lived traditions were held. Christmas Eve was spent at my Grandma and Grandpa Fickling's house "the farm" bringing together my mom's side of the family. A tradition that started each year at Thanksgiving with the grand kids decorating the Christmas tree and our annual picture in front of it. It started our countdown of days until Christmas. The most incredible dinner with Grandma's homemade rye-bread and cookies that we would try to sneak before dinner, followed by presents, laughter and fun together and end with all of us attending the midnight church service in town. Before leaving Grandma and Grandpa's house on the farm, our family would stand in the landing and sing "We wish you a Merry Christmas" to Grandma and Grandpa.
Tradition. So many incredible memories of tradition that were so important to my childhood and in shaping me into the woman I have become. So many traditions I wanted to carry onto the next generation. So many seemingly simple things that are often impossible in our fragile x lives. So many reasons I worry my children, especially Allison, won't have the incredible memories of Christmas and other holidays like I did and so many others do.
I had always planned to follow in my family's footsteps, continuing traditions - keeping them strong creating lasting memories for my children and our family. What I had not planned on was Fragile X.
With each Christmas card of perfectly posed families, each holiday letter filled with incredible accomplishments I am thankful we are thought of by our wonderful friends and family. I am thankful for their role in our life, their friendship and love. I focus on the love in each card sent and try not to let the sadness of what we can't do creep in. I would love a family photo each year, perfectly staged in a holiday scene, smiles, sleigh bells, pine branches, sleds and snow... matching sweaters, clothing or - well anything that isn't TMNT or sports related. A quick trip to get the picture without a week of preparation, schedules, charts, reminders and practicing. Jumping out of the car without protest, prompting, cues or hitting; waiting in line and successfully having a picture snapped that doesn't require 59 takes and photoshop to get us all looking one direction and smiling. A simple holiday tradition for many that escapes us every year. One that requires so much effort, I have stopped even trying instead hoping to catch a moment in time on my phone with both kids happily together, even if I am missing from the scene.
There is no decorating of Grandma's tree. I'm happy that after 15 years, we are able to decorate our own. I hope that with time, we can include that as part of our Thanksgiving - although I know decorating Great-Grandma's tree with all of the grandchildren and great-grandchildren is a tradition we've had to let go. And there is certainly no picture of everyone together, although occasionally we still try :-)
There are no singing of Christmas carols, there is no reading of Advent passages and no Christmas eve church service for us. Not that we don't believe or celebrate in our hearts, we talk in passing of the birth of Jesus but have not yet successfully added it to our daily routine. I can't get Parker to church each Sunday, let alone Christmas Eve when it's packed for midnight services. A reminder that no matter how important something is to your heart, no matter how much you prepare, Fragile X always has the final say.
At Christmas, like every trip home and each holiday with our extended family you will not find me grouped with my relatives enjoying the laughs and exchanges of white elephant gifts. You will not find me caught up in conversation or reliving memories with family I don't get to see nearly enough. Instead you will find me off to the side, somewhere a bit further away from the activity with Parker close by my side. Sometimes you will find us in complete silence as we take in the excitement around us, making memories of every smile and laugh we see around us. Sometimes you will find us caught up in conversation and sadly, sometimes, no matter how much we prepare to avoid it you will find us mid-meltdown with my attempts to keep him, myself and anyone/anything around us safe until we work past it.
While Allison can easily provide me a list a mile long each year with wants for the holidays, Parker is much more difficult as there is not much that he honestly wants or wishes for which adds another level of stress to our already difficult holiday as I try to find gifts he will like not just from Santa but from almost every member of the family too.
There are times when it's easy to get down, the holidays certainly have that double edged sword for many. It's easy to reflect on what we do not have, what we cannot do and how different our lives are. Living with a disability is a challenge, every day, you can always multiply it significantly on the holidays. The last couple of days, while preparing Parker for success - my mind couldn't help but drift to the darker place. It's not just my children that are missing out on memories and traditions but my entire family. My grandma, my parents, my sisters, our cousins. It doesn't affect just one of us, it has changed us all. There is, undoubtedly significant guilt that comes to play each holiday season knowing how much has changed because of how different our lives are due to the disability we have been faced with. Our family has done a wonderful job of doing our best to keep tradition and time together intact and appreciating the new ways in which we do. Parker is always encouraged to join but never pushed. I am always acknowledged as I am a distance away with him but not made to feel badly. I do my best to continue to smile and hide the hurt of celebrating from the side.
This year, time reflecting on tradition while preparing Parker for success has consumed me. I've been a bit lost, consumed by the feeling of letting everyone down. In my week of visual schedules, reminders and talks with Parker to prepare him while also mentally preparing myself for anything that may go wrong I was determined to make the memories I wanted, that I feel as though I have missed out on as well. The memories I watch my family make before my eyes that I don't get to join in on as Parker requires so much of my time and attention.
The night before Christmas Eve, both of my sisters and I were home along with my parents and all of the grandkids. I had looked forward to an evening of gifts, laughter and after the kids went to bed - games and catching up. Instead, when Parker was ready for bed and I laid down with him as I always do when we are away from home, I fell asleep too. I missed out on that opportunity, sleeping right through it.
Christmas Eve morning brought the holiday and away from home anxiety I was prepared for. Thinking I caught it early and was stopping a meltdown before it went full force, half way through I was caught off guard, those mighty 15 year old teeth found my finger and clamped down on the tip of my finger smashing my fingernail under his teeth until I could convince him to let go. As he settled down the anticipated "my teeth can't help it" words were echoed as sad eyes looked my way. A reminder of how challenging life can be for him and hopes that this would get the anxiety out of the way before we left for great-grandmas filled my mind as I fought the tears from filling my eyes.
Christmas at Great-Grandma's went beautifully. Great-Grandma and Grandpa Dick had cleared a spot for Parker's inflatables before we arrived, a gesture that honestly touched my heart. While many do not understand his need to take the inflatables with him places, they bring a comfort to him that makes life just a bit easier. It's always nice to have them welcomed. As expected, Parker and I spent the majority of our time off on our own own, still near everyone but enough away from the excitement to feel relaxed. It's not decorating a tree or posing for a picture but he eats at the table now and that is a major accomplishment in itself that we celebrate and see for the success it is.
Parker's life and disability come with many challenges, even Allison's though she is very mildly affected - but they also both come with incredible blessings. Innocence, hope, the ability to see good in everything - I can thank their Fragile X for this. While at 15 and 12 most kids are well beyond the days of believing in Santa, the magic is alive in our house. While Allison is putting all of the pieces together, I remind her that as long as she believes in her heart, Santa will always come. Just as my parents once told me. Something I now understand why. Parker, however, has many years of believing ahead of him, Christmas will always hold that magical element of the man in the red suit and his flying reindeer who can make miracles happen. It's a fantastic gift that has been lost on many of his friends and I am able to still cherish each year.
Their excitement helped significantly with my lost feeling of letting them down, failing as a mom not being able to provide them with traditions or life lessons that are important to me yet lost in our world of disability. I couldn't shake the feeling of failure completely though, no matter how hard I tried.
After a very late night of multiple attempts to get everything wrapped while excited kids woke repeatedly up and pets tried to "help" in the least helpful of ways.. it was here. Christmas morning.
We had asked, repeatedly, our friend Dan to come join us Christmas morning for presents. Repeatedly, he told us no. I didn't even wrap his presents, they sat in a box off to the side - unwrapped until I actually needed to do it as I was convinced he would not show up. A friend I have known for 16 years who has watched my children grow. A friend who can always make us smile, even when he struggles to find one himself and understands Parker in a way very few can. Both Parker and Allison have a connection to him that I simply can't explain beyond a love and respect that is unconditional. He is the first person they ask about in the morning and the last name I usually hear before they fall asleep. As I had prepared myself to tell them he was at his sister's house, I checked my phone as we began to wake up from my bed where the 3 of us were curled closely together.
Over the next few moments in a matter of texts, a Christmas miracle unfolded before our eyes....
The sheer excitement of my children surpassed any care in the world if Santa had come or not. As our Christmas miracle came to the door, 3 bowling pins in hand, smiles lit up our home, I saw in my children the most incredible gift I could have been given, the reminder that I am doing something right. More important than presents under the tree, more important than posing for Christmas cards or even tradition was the unconditional love for our friend and appreciation for his part in our lives. A clear reminder that it's people and time together that are most important and no matter our struggles with Fragile X, that unconditional love for others is something that no disability can take away.
For the next hour as presents were unwrapped and memories were made - I was reminded through the laughter and chaos that although our traditions and lives are different, it doesn't mean we aren't making memories. It doesn't make our way of participation less, it doesn't make our traditions not as important or our struggles the victors; it makes us, just like everyone else special and unique.
We may never sing "We wish you a Merry Christmas" when leaving Grandma's house but our love is not less, in fact, I believe our love is more. Our love is innocent and pure, our love is not bought or based on what others think. Our love is deep, it is true and best of all it's unconditional allowing us to see into the hearts of others and loving them for who they truly are and appreciating their acceptance of us.
We are blessed with amazing family, amazing friends, an amazing community and an amazing Fragile X world - that all embrace us though our successes and our meltdowns. We are blessed with those who believe in us and those, who even though they'd rather be sleeping, never let us down. We are blessed with laughter and smiles, hope and belief in the good in our world. We are blessed with determination, persistence and appreciation.
And this year, we were blessed with our own Christmas miracle to remind us that it's the people in our lives we value, appreciate and love most of all and that despite our challenges, this Momma is doing something right. Sometimes it take a miracle to remind me of that ;-)
From our house to yours, may your holidays and every day of your lives be filled with reminders of love, happiness, family, friends and that you are doing something right. And, if you are lucky like us... 3 bowling pins!
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