Hospital Beds and Beeping Machines (a guest piece from my daughter as to how she views life with MS)

By Cate Oxford
I woke to the sound of a knock on my bedroom door. I had been in that strange realm between asleep and awake, when the world is a foggy kind of grey. I looked at the clock, it was early, too early. Too early for everything to be okay. I look to see my mom standing at the door. She opens her mouth.
“Hey, sweetie. So, dad couldn’t get out of bed this morning. We had to call the hospital. I just wanted you to know before the paramedics show up.”
There was something about this time that was different. Of course, this had happened before. Calling people for help was no stranger to us. My head is filled with the memories of watching my dad being pulled up by friends or family members that could come on a short notice.
It was a few months before. I remember the room being dark. My dad and I were sitting in our usual couch place; him on the end and me in the corner. I looked over to see his face lit up by the television, his eyes filled with the world we were submersed in. The walker stands stoically in front like it always does, patiently waiting to be needed. My dad pulls himself up, but his body does not agree. Before I even blink the MS has pulled him to the ground. I do what I always do, tell him everything is okay. For the next few minutes we push and pull until he is back in his couch spot once again, as if nothing has happened. It’s lucky that we didn’t have to call anyone to help, it was not so bad this time.
I wake from my memory as my mom shuts the door once again, letting me get ready for what will be a day filled with hospital beds and beeping machines.
It has been almost one year since this day took place. I have now become used to seeing my dad lie in hospital beds and roll down the street in his wheelchair. Though not very different from his mobility scooter, there is something about the permanence of the chair that makes it all real.
Back when I was still in elementary school, all pigtails and pink skirts, my entire neighborhood would gather at the tiny plastic park across the street every summer night and be together. Us rowdy kids would chase each other in games of tag and hop off the ground as if we were being burned by lava in intense games of grounders. Our parents would sit on the sidelines, sharing their days with one another. We played and they talked. But every now and then one of them would get up and join. They would chase us around and make us laugh and make those lazy summer days that much better. It made me so happy, but there was always one thing that made those days just a little bit sad. If there is one thing I wanted more than anything else in the world, it was for my dad to be able to run around with us too.
When I was eight years old my family heard of a possible cure for his disease, and we instantly flew to the only place we could get it, Costa Rica. My most vivid memory is asking my parents if this would finally mean dad could run around with everyone.
I have yet to play tag with my dad at that tiny plastic park.
My dad now spends his days in assisted living, waiting for our house to be made accessible for him. I have grown used to having to schedule time to see him. I have grown used to calling ahead at restaurants to see if they have ramps to get in. I have grown used to finding photos of him standing all those years ago strange. Ever since that day 20 years ago when his body went numb and he discovered what had happened, MS has changed how my family goes through life.
My dad has this one recurring dream that he often talks about. You can see his face light up when he does. In the dream, he is simply walking down the street. No cane, no walker, no scooter. He is just walking. It is in those dreams that he is completely happy. I am constantly reminded through watching him every day to never take anything for granted, not even something as straightforward as walking down the street.

12 thoughts on “Hospital Beds and Beeping Machines (a guest piece from my daughter as to how she views life with MS)”

  1. One day you will be walking. down the streets of heaven with your dad. Who knows maybe you’ll find a group of kids to play grounders with too. Keep on keeping it real Cate.

  2. Thank you Cate for sharing! Your thoughts paint a very insightful and eloquent picture of your journey with your dad. I would love to create an audio documentary based on this piece for loveismoving.ca to encourage young adults across Canada to love well and to count every day a blessing.

  3. A wonderful, touching and powerful account of what you live with everyday, and what I know so little about. Please continue to write about this journey. It will help you, me and other readers to care more, love more intentionally, and whine a whole lot less. Thanks Cate. Your dad is a hero. He loves you, and treasured the time he spends with you. Greg

  4. Thanks Cate. This is beautiful. You are a wonderful and supportive daughter. You are a blessing to him and I am sure he knows it.

  5. Great job! Sorry Cate you have to see your dad in that condition. I’m sure he is very proud of the young lady you have become. I was 16 years old when my dad went totally blind. Was very hard to adjust to his new way of life for our family as well. But we found strength in knowing God would help us through. God bless you for sharing, your experience.

  6. Thank you for writing this, Cate. As your dad knows, I too live with a person who lives with MS. Our situation is not as severe as what you and your family contend with, but we resonate so much with the accumulation of small losses that add up to big life changes. Today I read it aloud to Margie and we both had to take a break for the tears. This is a wonderful, powerful piece of writing that reveals a spirit mature beyond your years. May you dance with your dad some day.

  7. Kimberly Stahlbaum

    I just have to share how amazingly beautiful this letter is to me!
    I’m like your Dad, born with chronic health issues. That showed up later in life…for me at age 11…. That had altered my life, VERY often
    .
    You made me, again, be remindful of ALL the family – friends who have come to help me like for your family. Others who have also encourged YOU and your Mom too!
    From age 11 years. I’ve spent, from a few weeks, to the longest ar 3-1/2 months, in sick kids hospital, prior to & including my 16th birthday! I felt like “”Alice in wonderland. As it was Dec 20 & most pts either went home. Or got passes to go home for a few days…yet the staff always had all go to the “play room” for their birthday. So they had set up a huge table. And the only ones in it were kids 6 and younger .as the two around my age, had gone home that am. My Mom made me go in, because staff mad with look wondeful and those who went got cupcaksa
    if able. . Years later I had great a laughes. Seeing it in my mind’s eye! Haha
    Plus have had 4 Christmas in hospitals. (the strangest in Mount Sinai– as those years — Jewish customs were followed — so NOTHING Christmas was around, NOT even ANY Christmas Music!

    I first met your Dad when we were tennagers .
    I believe either at camp or at a youth event.
    Even though we’ve not seen each other for years. I have been on Facebook with him.

    I’m so thrilled that both my nephew & nieces have heard you Dad speak. As you got a bit of his gift of speaking, writing.,. When he was the special speaker at youth events.

    I have also read, seen posts, about how YOU are such an amazing daughter, to both your Mom & Dad!!
    Even though ..I just read this today, Feb 2020. —I still wanted to share how PROUD I am of you!

    You’ve got two utterly amazing parents!

    God, even through all the extremely hard physical, spiritual times, has always been beside you, .. even when you didn’t feel.hom. As faith is not based on feelings,..if it was we would be so separated,. From God many times .
    It’s based on so much more.
    That’s what we also have to share.
    Do not have your faith, .based on feelings.

    You have ALL stayed faithful!
    With you encouraging your Dad ..with comments like — It’s going to be ok Dad!

    You have grown up fast.
    Again, Thanks for sharing the above. As your Dad has shared how gifted you are, in many ways
    PLS send my friendship love to him++!!

    I have experinced living in a wheelchair, for 3-1/2 months, 2ce. A year apart. After each ankle fusions.
    I’ve had 2 hips,2 knees,(left 2’ce), above 2 ankles, Left shoulder pin/plates 2ce.
    2 liver transplant. & More
    Yet God kept me & your Dad alive to witness to others too.

    God Bless & keep YOU!

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