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Sunday, July 17, 2016

When My Son turned 7, my disease also turned 7 -- an MS Patient's story


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Love wins. Love and light, racing.

LoveWinsBeing sick is weird. In one way, there isn't a single moment's rest. I am always sick. I am always bogged down with this perching on my conscious or subconscious, at all times. But I am also human and in survival mode without even realizing it; so in many ways there are times I forget I am sick until MS comes around the corner like a bully and punches me in the face.
I grab my nose, still on the cement, wondering what hit me and it's like, "Oy yeah, that's right, I have MS. I really do have it." The blood from my nose is the reminder. Sometimes it takes something BIG to remind me. It's bizarre.
For someone who not only has multiple sclerosis, and has a sis with it and three cousins and writes about it ALL the time (it's my job) it is amazing that I can forget, and yet I do.
I'm sticking with the survival theory. Something in me needs a vacation, or a reason to carry on, so I block it out on some level. 
My boy turned seven (today) and we celebrated over the weekend before my infusion. We left for vacation straight from my infusion. Wait, well we had to replace four tires first. I got my infusion, Tony got the tires, we both got the kids, and we were off.
We are here for AJ's birthday. This was his request. There is no part of AJ that doesn't make me think of MS. I think my Ugly Like Me post says it all:
My baby turns seven and today we celebrate with a bunch of little dudes and water balloons. I can't help but feel happy weepy. AJ turning seven means my disease turns seven as well. They grew up together. It's a very strange feeling, but one that keeps me warm.
I have these little markers now - MS is 7 years old, but look how long his legs are now, his eyelashes, as he sucks his thumb and begs me to let him sleep in my bed for his bday party night. I say okay because it's REALLY special to me (he thinks it's all about him). MS hasn't touched him. It didn't touch me in the way it wanted to either. Look what T and I grew (and our loved ones, it takes a village) over the last seven years of pure fricking chaos lol!
Times I couldn't walk, losing the ability to work, going to work with nothing left in my being but a pump in my arm, hidden under my sweater, and a bucket of fear in my gut. How would I live? How would we live? Paving the way as a writer, no money, just love. Loving hard. Trying to type as fast as the emotions came. Swollen fingers. More love. Daddy being sick. How did we do it?
It's been crazy and look what we still did with almost nothing but a bunch of love. We grow.
We outgrow the darkness and this "badness". No one blamed anyone and we just loved each other and held each other harder. Looking at AJ, celebrating his birthday, I realize nothing evil or bad has been able to rest on me. He is proof. Love grows. Faith grows. The light grows. All at these amazing speeds that are faster than darkness. Amen to SEVEN. It feels like a beautiful number. God bless you my boy.
Playing basketball with you. Pretending to commentate while you win Gold in the Olympics. I can see your little rib cage, porcelain and innocent, breathing hard. I can predict you will have an awesome work ethic as an adult because you already do as a young one at play. You can't work out with a shirt on lol. Watching you climb trees and hearing you call me your best "baller" and the winner of the medal for "best player who has trouble walkin" lol... wakes me up. Makes me run, faster than the darkness. God what a gift you are. I don't believe the sun rises and sets on my children - but man it kind of set and then raised with you. Happy Seventh to you and to Ugly Like Me. We're seven son!
Yes, my posts on the MS page ARE that long. And my love for my boy IS that strong and bound to my disease. MS  felt like the sun was setting, and then this baby started to grow. It was then that MS had no chance. The sun began to rise. It was hard, but I love hard. If I love you - I love you hard. There's no other way.  My husband is the same. 
Since our love is so strong, you'd think I'd be at my best - or on my best - behavior at remembering my limits for AJ's birthday. I know what to sacrifice so I can make certain things happen. You learn as you grow through the course of your disease. I need to really save up my energy to celebrate properly. I did great at his party.
And I just wrote an article for Living Like You about the importance of respecting heat and being honest on vacations, and yet, I didn't listen to MYSELF!!? Why?
I went to the beach after telling my family I couldn't. I had a fever, they almost didn't do the infusion. My nurse questioned it. I didn't feel right and I felt very wrong when I left. So of course I give in and insist on going to the beach lest two of my babies gets caught in an undertow and T must choose between his love...? I make no sense. 
Anyway, I went and bonked. That's the short version. Because I made that really dumb decision, they are at the movies today celebrating my baby's birthday without me. I am on the couch figuratively beating myself up.
Be wise my friends. I know you want to do everything, but you can't. Why? Because you can't. You have MS. You must be smart. That is just the way it is, for life. Don't be me. Not even for your kids because when they really need you, like on their birthday, to blow out another year and waft the smoke away, clearing the air for a new one - you won't be there.
Maybe your problem and limit is something totally different and you have some other adversity to deal with - the moral of the story is you know what you must sacrifice to be well, stick with it. Don't let guilt throw you off. You are doing what you are doing for a reason, because it is SMART. You must put your own oxygen mask on first if you are going to save any of your loved ones. Put your mask on first...
All I want is for my children to remember me and to remember that I stood for so much even when I couldn't stand at all. I don't need them to remember me as a beach babe. That's not what I'm going for. So today I'm wrapped up in a dress that was meant to celebrate, and some really soft blankies, and praying they are enjoying their trip to the movies. And who knows? Maybe I will be better enough for a celebratory dinner.
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