I know one day I will miss these moments.
I know one day I will look back on this time and really be able to convince myself that this was the best time of my life. I will look at pictures and see the Instagram filter. I won't see that there were 15 attempts to get both of their heads in the picture and my under eye circles that I PhotoShopped out or the crying that ensued after I forced all of us to sit so close together for 5 seconds or the candy that was used as bait. I won't remember the meds and therapy and exhaustion and the regression. I will see the filter on the picture and their chubby cheeks and hear their little voices and I will miss this. This pace is hard and fast and relentless, and while many times this feels like a marathon, I know one day I will look back and it will feel like a sprint. Speed. Pace. Distance. Not normally words that are part of my vocabulary. Going fast is something that my body typically doesn't allow me to do unless it is my foot to a pedal. However, the winter months have brought to my memory the fact that I do, in fact, have an athletic activity in which I enjoy. Skiing. No, not snowboarding. Don't get ahead of yourself. I am not that cool. Just plain ole 1990's Paoli Peaks skiing. It is fast and scary and independent and it is outside. Which I am assuming means that, since I love to ski, I therefore love nature and exercising. But I remember being very confused as a child seeing cross-country skiing, Why don't they take off their skis and just walk? When do they get to the hill? Did they get lost? Why would you want your legs to have to make that motion for so long? Where is the fun? Where is the thrill? When do you sit on the lift with your friends at the end and talk about what happened on the way down? When do you go to the ski lodge and eat and drink? I am much more of a downhill skier. It is Fast and Furious. It is Crazy and Free. Then, most importantly, there is the precious time at the bottom of the hill to discuss the craziness that happened on the way down. The chair lift is social time that is built-in to a sporting event. Genius. They were really thinking when they set this one up. And even better, part of the sport experience, is a Ski Lodge where you go to eat and drink and sit by the fire and, again, discuss the craziness of the day. I am a downhill skier. But somedays I feel like I am on a cross-country expedition. The days are long and quiet and filled with time to think.. These days include exciting topics such as: Silence.... Reflection... Perseverance.... Dedication... Solitude... Whoa. I am not Henry David Thoreau. I am no Mountain Man. I am a sit by the fire and talk kinda chick, not go searching in the woods for the firewood so I don't have to be around people kinda lady. I am a Doer, not a Thinker. That thinking stuff is dangerous. You can only think for so long before you drive yourself mad or finally find something to be upset about. Which is exactly what happened when we returned from Houston. We came back on a high. The community was unbelievable. Luke was seizure free. He was walking and talking and clapping and looking into your soul and laughing. We had been busy and checking things off the list from Dec. 7- 23. We were on fire. And then, in keeping with the feel of any feel-good holiday blockbuster, I opened my door Friday, December 23 and got the feeling that I can only imagine that little old lady's dream of when Publisher's Clearing House knocks at their door. Except, instead of having Ed McMahn there with balloons, it is everyone you have ever loved in your parent's front yard holding candles and singing to you as one big Grand Finale to the craziest year of your life. You don't get higher than that moment. And then we were home. And not only did the pace slow down. which isn't good for my psyche, but so did Luke's progress. The pace slowed. Then it stopped. Then it threw itself in reverse and hit the gas. Luke was puffy and uncomfortable and starving and still not sleeping, all of which we were hoping was just from being on a steroid for a month. Then he stopped walking. Then he stopped sitting. Then he started twitching and jerking and flapping. I recorded a few of these episodes, convinced that the seizures were back. The doctors assured us that Luke was "still tremulous from just having two brain surgeries (so chill out)" but that offered little relief. And then something really terrifying happened. Luke forgot how to use his hands. He wasn't paralyzed. He could still move his arms to flap when he was excited (which he just so happen to be all day and all night long) but when you sat with him in front of a toy he liked, he would look at you and cry and plead and try to grab it with his mouth. It was like he didn't know that he had hands anymore. When I put him in his highchair and poured Cheerios on his tray, he would throw his face into the pile, grabbing all he could with an open mouth. Ok, yeah... fine he was seizure free. But call me crazy, it was hard to be excited or relieved or anything other than confused. He was doing so well right after surgery. Why had it stopped? The doctors said to give it some time and I did, all while secretly preparing myself for the possibility of my "New Normal". I mean, we went to Houston to stop the seizures. It happened. I'm not an idiot. I know it wasn't going to make life perfect. Why should I complain? Because I have to feed him? I've been doing that since he was born. Because I still have to sleep with him? I've been doing that since October. I should be grateful. Focus on the positive. But without time on the ski lift, it is hard to see the finality of the hill. Without time to push reset and recharge, those few days felt like a cross country expedition. All I could see was a white blanket in front of me. I seemed to pass the same tree and rock and leaf over and over. The same motion. The same surroundings. The same view. I started the slow decent down the slippery slope. I will be doing this same thing fooorrreeverrr. I know when my mind starts to go there. I don't try to stop it anymore. It is healthy to slip down that slope every once and a while. There is a time to acknowledge that even through the strength and faith and hope and peace there is also disappointment and loneliness and fear. On these days, the days I just go ahead and go there, I look in the mirror and see myself as a 15 year old girl. I am wearing only lip liner, my eyebrows are over plucked and my hair is orange from my at home "Sun In highlights" that my hairdresser still yells at me about. My arms are crossed and I am pouting about how the world isn't fair and no one reeeallly gets me. It is no use... My wiry grays and red lipstick and brow pencil can't cover up who I become on those days. The sulking teen seeps through the Sephora mask I wear. So I accept where I am and allow Brandy and Three Doors Down to play over and over in my head while I sweep up the same Cheerio pile for the 15th time this weekend. I make loops around my parent's kitchen slipping cereal in to my 3 year-old's mouth and chatting with my friends about the whirlwind of their holiday. In true teenager fashion, somehow muster the energy to be mad at them for having fun without me. And then I look over at Luke. He had been dive bombing his tray with his face trying to feed the insatiable hunger that has put at least 5 pounds on my string bean turned lima bean of a boy. I look over and Luke lays his head on the tray. Without thinking he takes his hand and rakes the Cheerios into his mouth. I stop what I am doing and move closer, listening less to the voice on the other end of the receiver. He stops. He looks at his hand. He looks at the Cheerios. And just like that, it all clicked back in to place. Luke found his hands and I found my hope. By the end of snack time, Luke was picking up apples and bacon and cereal. He was clapping. He was picking up his cup and throwing it across the room. And, in a flash, I was a 32 year old again. It is a wide turn, but we are starting to turn the corner. You see, it isn't the surgery or the seizures or the sleep deprivation or the homelessness or the regression or the loneliness or the failure that breaks you down, that makes you want to listen to Jagged Edge and Creed in your 5 disk CD-changer and feel sorry for yourself. It is the inability to step out of it. It is continuing to miss the ski lift. Just stopping and breathing and laughing and crying and remembering a time you were more than a mom. Being a friend or a daughter or a girlfriend or a sister. Those are the times that make it possible to tap in to those reserves when you are on empty instead of reverting to your adolescence as a means to cope. Those trips up the lift make you ready to lean in to the next time around. Those moments make you better and stronger and lighter and sharper the next time down the hill. I should end with the fact that, I do in fact love and appreciate these moments with my kids and in 2017 I am going to be more present and positive for my children. But that is impossible. They get all of me that there possibly is at this moment. They get it all because I do adore them and I do genuinely enjoying hanging out with them... A LOT. They can't get anymore of me... unless I somehow find more of me to give. There is more of me out there waiting for me to find it and I know just where to look... See you on the chair lift.
10 Comments
Ann Newton
1/2/2017 05:42:51 pm
All you have said and feel is valid. I hope there is some way.....someone who can make you feel like you are more than a mom. I hope all the other parts of who you are will be restored. I know just a little (very little) of how you feel because I watched my mom cope in a similar situation and also my dear friend, Linda. I love your writing style. You have an incredible talent of communication. I hope you will have time to continue to exercise it! Blessing in 2017!
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Byrds
1/2/2017 05:59:23 pm
And I know they love spending so much time with you!! You're an awesome mommy! Enjoy every little bit! It's yours!
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Matt Nolan
1/2/2017 06:16:06 pm
Stephanie I just love your writing. You explain things so well. Just know my heart just melted yesterday listening to our kids screaming out "Team Luke" yesterday. They know how important you, Luke, Sam and your family are to Rachel and I. They always want to "record videos" for Luke. I could go on and on but I just want to let you know you will always have friends with you on that ski lift to talk with. This is such great news and I cannot wait to hear people screaming out "Team Luke"!
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9/16/2019 11:06:26 pm
Before anything else, I just want to tell you that you really have a good writing style. You are very detailed and I appreciate you so much for writing a story that mom. You are more than a mom, you’re an extraordinary mom because of your effort and love for Luke. You don’t give up easily. As much as you can, you are always there for Luke every step of the way and makes sure that he is taking the right path. You are making sure that he will not go elsewhere because you are there to guide him. My heart adores you so much!
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Terri
1/2/2017 06:22:38 pm
I didn't realize that I wasn't breathing until I gasped when I read that Luke starting putting food in his mouth with his hands again. You are so much...SO much...more than a mom. (Of course, you are a mom extraordinaire.) You are a friend, daughter, sister, aunt, warrior, writer, beautiful soul...I could go on and on. Love ya.
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Joan
1/3/2017 07:37:14 am
I would live to leave a reply but I am at a loss for words (they do not appear as easily for me). But I continue to pray for all your family and all of your little ones care givers. May your new year be filled with many
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Angela Gerka
1/3/2017 02:11:40 pm
You are so wise. Just know that your children will love, and respect, you more for letting them see that you are human. Trust the voice of a 26, 17 and 14 year old! They can always sense the "real".
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Dawn
1/3/2017 03:01:20 pm
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1/3/2017 05:33:38 pm
Stephaine u will ride that lift again. we love u and the boys very much. you are a positive role model for all of us.
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Mary pat boone
1/3/2017 09:51:47 pm
Stephanie. I am 66 years old and have a daughter that is 35. Your writing brings back all the what ifs I had 35 years ago. I so wanted a crystal ball. I made so many deals with God. Let her live I can deal with whatever happens. I would sit her up and sh would fall over but like you I had a multitude of friends and a wonderful family that somehow got me through the moment and your grandmother was one of them. You are one tough cookie and no one truly understands what you are going through unless they have gone down that slippery slope but we are lucky to have the many people in our life that are there to pick us up when we fall down. God bless and know that prayer is a powerful tool
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