Dreams of Yesterday

 

I had never run so fast in my life.  Even interval treadmill running to the motivating sounds of Guns n’ Roses in my ears couldn’t compare to chasing my 3 year old son across the entire length of the park.  I was in a full out sprint, my feet barely hitting the ground before moving to make room for the other one that was following close behind.  I could feel the sweat trickling down my back and I had to stop for a minute just to catch my breath from laughing so hard.  The momentary pause vanished as quickly as it had come when a high pitched squeal and giggle from in front of me had me propelling myself forward again as he darted from tree to tree singing a song in that melodic preschooler tone of “you can’t catch meeeeeee.”

Oh?  But I could.

I caught up with him in seconds and effortlessly gathered him in my arms and swung him around and around until we were both so dizzy that we toppled to the grass in fits of laughter and gasps of exertion.  As his cherub like giggles quieted down into soft snorts, he looked up at me with wide eyed innocence that I hadn’t seen in a long time.

“Mommy, how’d you get to be so fast!”

I couldn’t help but smile down at him, the warmth of the early summer sun illuminating the mop of blonde curls on top of his head into some sort of a makeshift halo.  I felt the same heat coat the back of my neck and couldn’t resist a chin lift up to the sky.  The brightness clouded my vision and I had to squint.  I could feel his eyes still fixated on me, so with the sun beating down on my face I answered him as honestly as I could.

“I’ve always been fast, son.  That’s my job…to always be one step ahead of you.”

“Where did you learn?”

“The mommy book.  Every mommy gets a book on how to be a superhero.  We can run fast as the wind, jump as high as the moon and make everything better with just a band-aid and a kiss.”  Yeah, I know…even *I* didn’t actually expect him to believe that line.

To my amazement, that answer seemed to satisfy him and he excitedly stood up, his short legs wobbling backwards until he was finally able to steady himself enough to reach out a tiny hand to me.

“Will you teach me how to play soccer, Mommy?”

Jumping up from my reclined position in the grass, I bent down and quickly scooped up the ball that had been resting beside me.  Throwing the ball up in the air, I watched his amazement out of the corner of my eye as he intently watched me bounce the ball on my knee and then extend my leg and kick it across the field.

“Wow! You’re good, Mommy!”

I couldn’t help but let a little pride show on my face.  “Yeah, well, your old Mom is still quite the athlete.”

With another squeal, I watched as he took off down the freshly mowed grass after the rolling ball.  For what seemed like hours, we took turns kicking, running, passing and moving the ball down the field for a goal.  I could feel the sun beating down even hotter on our skin, but I wasn’t worried.  I had covered him in sunscreen and thought the brightness could do us both some good.  I looked down to see him wipe the back of his little hand across his forehead to catch the beads of sweat as the dripped down his temple and curled his already damp hair.

“Mommy, is it lunch time yet?” 

Yep, typical man.  Food and sports. Checking my watch, I shrugged and glanced across the park the families having picnics, their blankets all spread out like a woven tapestry across the field of green.

“Soon, son.  We had a snack earlier….we’ll be fine for a little while longer…besides, your sister’s softball game is about to start and I haven’t missed a game all season!”  His head wobbled up and down on his shoulders as he nodded in agreement.  Bending down, I turned my back towards him and nodded my chin in his direction.  “Hop on, cowboy…let’s go for a ride.”

Amidst his hoorays and yelps of approval, he took a running start and landed on my back with enough force to knock the wind out of me.  As his hands clamped tightly around my neck, I leaped off the ground and made horse trotting sounds as I galloped my way over to the ball field where a very proud 5th grader stood, her catchers mask in place as she adjusted her knee pads.

“Hi Mom!  I’m the starting catcher today!  Me!  Can you believe it???”

Ruffling her ponytail, I smile as she rolls her eyes and smoothes it down right behind my hand. “Of course I can…I see how hard you work at practices!  You’re the best catcher they’ve got!”

I just stared at her as she flashed me one of those rare pre-teen smiles.  I had heard they existed but I had never actually seen one. Within a heartbeat she had run back to her team’s dugout.  Taking a seat on the metal bleachers, I sit back and just smile.

It had been the perfect day.

It had also been a dream.

As I woke up this morning, drenched in sweat from yet another mid-sleep body temperature change, I couldn’t stop the familiar droop of my shoulders and long disappointed breath as I realized I had the same dream again.

I dream it often.  Too often.  I wake up filled with hope and smiling.  I honestly do wake up smiling.  I had almost forgotten what a smile felt like.  Reaching over to turn off the alarm, I fight back the sadness that I knew was inevitable.  It always followed the smile.

It was always a dream.  In my dreams I can do anything.  It’s the lonely harsh reality that reminds me that outside of that dream, the scenario would happen much differently.

I wouldn’t be chasing after my 3 year old.  A few feet of running and I would feel as if my chest were on fire, incinerating from the inside out.  I would be gasping for breath and feeling my heart rate pound in my ears until I could hear nothing else.

I wouldn’t be scooping him up and swinging him around as if he were light as a feather.  My knees would never allow me to bend down like that…and even if I managed to somehow get down there, I’d need a forklift to get me back up.  And swing him around?  Forget about it.  One half rotation and the vertigo would knock me down to the ground quicker than you could say “dizzy”.

I wouldn’t be playing soccer….or any kind of sport that required standing, moving or kicking.  Actually, anything that required more effort on my part than blinking was pretty much out of the question.  Even if I could bring my leg back far enough to kick the ball, my knee would get wind of what was getting ready to go down and put an end to it all by imploding and becoming the 3 year old’s newest fascination of pressing into the fluid and seeing how long it took for the skin to pop back out.

I wouldn’t be putting off lunch.  Medication must be timed perfectly…taken too late or too soon and I would have to find the nearest trashcan to lean into for the next hour or so. Medication can’t be taken on an empty stomach, so I must be prepared with snacks…always.  One time of forgetting to prepare my purse could result in a trip to the Rheumatologist.

I wouldn’t be carting him around on my back like a baby monkey.  The snapping vertebrae and increasing spine curvature would crumble me like a house of cards.  Sometimes it’s even too much to cart my own body weight around, much less someone else’s.  My son has never had a piggy back ride with me.  And he never will.

I wouldn’t know it was my daughter’s first time as starting catcher.  I wouldn’t know because I hadn’t been to any of her practices or games.  My body just wouldn’t allow it.  Five minutes of sitting on hard bleachers would be paid back in full with 4 days of bed rest.  I hear about the home run she hit as she comes home that night as sits on the edge of my bed, telling me highlights of the game I missed….of the games I would always miss.

Some people dream in black and white.  Some people dream in color.  I dream in memories.

 

Article written by Senior Editor, Stephanie Kennedy.

Stephanie lives in Fayetteville, NC and is the mother of 3 always hyperactive and occasionally adorable children. She was diagnosed with SLE in 2001 at the age of 27 and in the time since, has added Scleroderma, Hashimoto and Celiac disease. In her day-to-day life she is a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla.  She can always be found somewhere in social media-land causing some sort of trouble.  Find her on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.
©2024butyoudontlooksick.com
  • Marjorie Hufham

    I pray there will be organizations to pay for treatments like Hyperbaric Oxygen Therapy, that No Insuriance Companies(that I know of) will heal alot of wounds before they have a chance to deform so much & hurt so bad! Now there is plastic surgery and vessel grafts for encreased blood flow. But people with Scleroderma do not heal up well, our skin pulls away from the suture line. and sloughs off more skin. Right now I have holes in (2)my right ear, open ulcer all over my right index finger, right great toe skin sloughing off all around my toe nail ,with edema red /purple , horrible pain Addicted to opiates but they still help so much with the pain and some yoga I can still do, without hitting an ulcer on left 2nd toe. Had two night stay in I.C.U. in the Hospitol after an arterial-vein graft( a couple of days ago), and sympathectomy and two long pins still in my right index finger.If I had only had the thousands of dollars to pay for hyperbaric oxygen treatments, I could have done those months ago before the sore through off more skin,I wouldn’t have needed surgery! Medicare doesn’t pay for H.B.O. Tx.’s or any other Ins. Co.. I’ve had 4 digital sympathectomies now Still waiting on my 3rd M.R.S.A. negitative test, then people won’t avoid me so much and off of Isolation.I’m an L.P.N. & picked up M.R.S.A. from my last patient(I think). Lungs are slighlty worse each P.F.T. I want to be able to walk at my son’s wedding(no big toe amputee).It’s this coming Fall(the wedding).And I want to be allowed to hold my grand-babies, without fear of ( or horrible pain for me)M.R.S.A.(come on 3rd negative!) And for my labia to streatch open wide enough to make love to my husband again! ( PLEASE,&THANK-YOU, GOD!!!)

  • MiniMorg

    That did put a lump in my throat. It shows so amazingly the transition from being perfectly healthy to suddenly having everything taken away and only being able to dream of the past days. I’m sure a lot of people can relate

  • Rachael

    Bawling as I sit here cradling my 3rd born, whom we fought so hard to bring into the world after being unexpectedly blessed. I don’t know if this one will even have the minimal experiences his 3 yr old brother has had, and I know neither of them will have the times my 10 yr old daughter has had.

  • Marina Apperley

    Thank you. Though you made me cry and though our reasons are slightly different, you told my dreams too. You told them perfectly.

  • karli

    Awesome article. I can totally relate.

  • decreases

    so sad but so true……..us spoonies dream of others reality. And if our lives were others reality they wouldn’t know what to do or where to turn………..Auto immune conditions are prison sentences a life of missed opportunities and a head full of dreams …………..thank god that we dream otherwise there really would be no point to our lives. Luv and hugs to you all.

  • Bree Adams

    Your always my hero, Steph. I wish I could give you some of my days. There are so many days I tell my kids I’m too tired ot too busy. Those days were wasted on me…and should have gone to you.

    I’m praying always for you my friend.

  • Erin Talley

    OK, first off…it was a box of kleenex not 4! I am sorry this is your life, you are such an amazing person and I thank you for keeping this disease on the forefront…I miss you and wish there was more I could do for such an awesome lady!!!

  • claire oliver

    thanks for sharing hun sending hugs

  • Shawna

    Ack – tears. But thank you. Once again, you touched a common chord with all of us in our disparate yet similar circumstances.

    *gentle hugs to all*

  • Terri Wetz

    What a wonderful talent you have! I, too, wondered if you had been rummaging around in my own head and dreams. My grandchildren are growing up seeing me slowly decline; the eldest asked just last week if I was going to die soon. *sobs*

    When they were very little I was able to do some limited walks with them but they don’t remember that. All they see is Nana in a wheelchair and have a wariness about them when they approach for a hug and a kiss, afraid of hurting me. My almost 78 yr old mother is the one that takes them shopping and to McDonald’s Play Place, out to lunch and the park. All things I should’ve been able to do but can’t.

    I don’t know which hurts more, the fact that I’m unable to do these things, or that they are so accepting of it that they don’t even ask me to join them anymore.

  • Vickie Foster

    Tears…

  • Billie Jo Robbins

    You are a very good writer!…You put into words the heartache of what so many moms with chronic illness feel….Weird thing is…I don’t dream of how I used to be….I think I used to…if I remember right….but now my dreams are of the crushing fatigue and pain…

  • Yep, you have done it again! Made me cry and made me say, what, is she reading my journal again??? I too have a “dream” life. I dream of running and dancing with my children. They are grown now and I dream of doing these things with my grandchildren. I am blessed to have had some of their younger yrs without disease but they don’t remember that much. I think to that I am blessed to have this “dream” life. For it does remind me that Heaven is waiting for me and that we will be whole in Heaven and be able to run and dance again. I hate the pain I really do but weirdly thankful for it, for it reminds me to snuggle close to God and to my loved ones. a double edged sword.
    Thank you Stephanie for sharing yourself so very much with all of us other spoonies out here. I pray that we all can live joyful lives, and if it is thru our dreams so be it. Really hoping I am making sense as just took pain meds a little bit ago.
    Blessings,
    Deanna Shouppe
    [email protected]
    sle, sjogrens, reynauld, addison’s, celiac, RAD, colonectemy, jpouch,

  • Lillian

    Steph, I hope that one day (soon!) you are able to do at least one thing with your kids that you do in your dreams…even if it’s only for 5 minutes. In the meantime (and this is small respite), take pride in raising children who will understand, be sensitive, and respect others’ in all situations – including most importantly those with invisible illnesses like ours. :: gentle air hugs ::

  • Lori

    You know what I love about your writing? You can take what so many go struggle through but can’t even begin to describe, and you take not-so-great circumstances, find creative words and communicate what it’s like to live with this disease, so those also suffering can share both in your tears and triumphs, and those who are on the other side can understand what is going on with those we love. Keep up the great writing… it’s your gifting!

  • Francisca

    That’s exactly how I dream! I remember and hang on to those memories for dear life in the hope that they may come back as reality as soon as this MG crisis goes away.
    I was doing great until last week, when I had a setback of two falls on consecutive days with head injuries…I never knew what hit me. Now it’s back to the drawing board in every sense to regain my confidence and get away from this lonely place called fear. Your stories do a lot to help me move in that direction.
    Big hug and many spoons to all who share rare conditions!

  • Tamara

    Sadly, I think we all have the same dreams. I know that you and I share similar ones.

    Maybe someday, I keep telling myself though knowing it will never happen.

    Thank you for sharing your dream. I am so sorry that it can’t come true. I think that for many of us, the most difficult part of being sick is the robbing us of our parenting joy. We have all learned adaptive parenting but what we all yearn for is “normal” parenting.

    Thinking of you,
    Tamara

  • Ivy

    heartwrenching…….

  • g

    another great article….lots of love and hugs to u all…..mwah

  • Melissa

    Another wonderful article Steph. You have a great tallent for making me cry lol. Thank you again for sharing these deepest parts of you – it really helps me to understand what you and my other spoonie friends are go through on a daily basis. (((Hugs)))

  • Talk about a beautifully written narrative. I’ve got that lump in my throat, I’m tearing up, and it’s because I live through my dreams as well. This hit way too close to home for me.

    I too have a normal life in my dreams. I’m the old me, the way things used to be, or are supposed to be. I have children in my dreams, for that is what I want more than anything in the world, yet I never wake up to the sound of a little childs voice. Most of the time I wake to the sound of my 61 year old mother, who had to leave her home in Maine, and move along with my father to New York, to take care of me. He retired six years ago, but went back to work solely to pay for my medical bills. My husband has a separate life from mine, trying to include me in his social activities, which I often have no choice but to decline. I want so badly to get pregnant, but after two spinal fusion surgeries, antiphospholipid syndrome, and this unknown autoimmune disease, the likelyhood of carring full term is slim to none, but there is a “slight chance” with bedrest. but I’m on strict orders from my rheumatologist to stay on birth control pills because I “can’t afford to get pregnant.” the meds I’m on would kill a growing fetus. It hurts to make love to my husband, i cry for hours afterwards, and he doesnt even know. Not to mention, I can’t even take care of myself, let alone a child.

    How do you amazing women with invisible diseases do it? How did you get off of all of your meds to grow a baby? How do you take care of your children?

    Stephanie, you are a wonderful woman and mother. You inspire me to get up and get going, trying to not feel bad for my shortcomings. Thank you to all of the spoonies that are helping me learn to live life again, albeit differently.

    With love and hope for us all,
    Miranda Stein from NY

  • Michele Ellman

    I feel your physical and emotional pain. I have been in horrible pain for 20 years. I Have dreams like that all the time about my daughter and husband. I have missed so much do to the pain and it rips my heart out. When I wake up after a dream liken that It hurts so much when I realize it was just a dream and that my reality is most peoples nightmares and my dreams are most peoples reality. But, I am still here and as long as I wake up every morning to my family I am grateful for that.

  • Maureen

    Thank you and at the same time, I’m so sorry. I am thanking you for telling your story because I do not feel so alone. I, too, have a recurring dream of my life prior to being ill. I, too, have young children. Bless you.

  • Ailsa Price

    Damn it Stephanie, you made me cry! ‘Course, no more tears than when I learned earlier this week that my 4yo thinks that all, “Mommies are fragile.” :’-(

  • Gosh steph. Hit me right between thee eyes with this one. *e-hugging you*

  • Courtland

    Amazing article Steph. I hate it that you have to miss so much but you are still an amazing mother and wife. Love you!!!

  • Chelle

    You always write from the heart. My dream is for a cure, but any progress in easing your pain is a good start. Love you xoxo.

  • Kirsty KR

    That was so beautifully written, i too wept as i too have incredibly vivid dreams of what could be, and i wake up smiling, laughing, i also dream memories and unfortunately wake up screaming, crying, violently thrashing and screaming out because of the horrors of what caused my pain. I am sorry for you and i totally understand, thank you for voicing what is so private, but so very moving. It was beautiful Stephanie. Thank you.

  • Dottie Balin

    Thank you for sharing that story. Very moving and very true. Great article..Keep smiling 🙂

  • Lilli Sarantos

    Written so beautifully…

    Thank you for sharing that

  • Ruth

    I knew where you were going with this as soon as I started reading it. I have had dreams about running, jumping, swimming, all the things I used to love to do. I don’t have kids who are missing out, but I am sure you give them much more in other ways that more active Mums can’t or don’t.

  • RedCurlyHead

    You’re not supposed to make me cry into my first cup of coffee. But I’m glad you did.

  • *hugs*

    You made me cry!

    But thank you for sharing that with us!