It's my husband's 46th birthday tomorrow and I have spent the entire day running around, procuring gifts and children and homework and cooking and I'm tired. So, so tired. But I feel like something is undone, something is left untied and I can't go to sleep until it's taken care of. Because my words have been lent to to so many, FOR so many, and yet so little about him, Tony. The one. I cannot find sleep and sleep hasn't been a good friend. It will not find me.
I share the pics and the smiles and sweet posts of him on social media, little things, but not much in my blogoshphere. I'm not sure why. Maybe I am and this is just the first time I am admitting it aloud, to you and myself.
Maybe T is the last thing I have for myself? I've kept him pretty private, except for the one sex article my editor begged me to write. Maybe two. But even they were very guarded. I think it has more to do with having an innate understanding ,since the day he walked through the door, that he was the most delicate, fragile and precious "thing" I'd ever touch. You don't throw things like that in the air. I'd have a panic attack. You'd find me in fetal position on the floor. No.
He's just worth too much. He's always been this porcelain relationship that I try, some days harder than others, to shine and put in its place. Perfectly positioned to serve this world. The world we created, biologically, spiritually, together.
It was no cake walk. I'm a lot to handle. It was evident the first day. But he just listened, picked up a ghost bone (a very smooth rock) and keeps it 'til this day with the date, written in Sharpee on it. He told me then he was going to love me all the way and he meant it. He even took me to the place he wanted to marry me; not a typical first date kind of thing. I couldn't grasp why, but I tried so hard to break it before he broke me. I had a habit of doing that - Surely he'd find out I sucked. Why not self-com-bust first?
He was the first man that wouldn't let me. He confused me in a beautiful way. I was so wild. He was so good. I wanted to be like him when I grew up even though he wasn't much older than me. He was who I wanted to be. Still, the older I grow, the more grateful and understanding I am of just what that means. So, I don't throw words up in the air about the most precious thing in my life, kids attached. It's too sacred.
And everyday I muck it up, naturally. Everyday, he just doesn't, naturally and happily. It's never a problem that it doesn't come as easily to me. He just models it for me.
He'll catch it when it's falling, carries me when I'm crawling, nourishes these tiny, tired veins and then does all the stuff you just do in a day. He's a father and a husband and a legal manager at the USGA and a crazy cyclist with legs that could crack walnuts. I believe that is the first time I have ever used that expression. I have a body that is broken. But he struggles with his health too. He gets shots in his eyeballs because of an eyesight issue, has seizures and we can't find out why. BUT, he puts his own pain away so that we can be a family for another day. And he's funny. And he plays. He dances with me. He's a puppy that looks for play when I'm a kitten, I run away. Bitchy. Finicky.
He is the exact opposite of me. Of words. He is love in motion. I am words. But as they say, words are wind. Be like him. Love in motion, everyday.
I can't quite explain to other people, what do you say? He is this extraordinary, ordinary man. Family was his plan. Read his yearbook quote. Loving me, taking care of me was his plan. Never asked for a damn thing from me. I suppose he just hoped I would gently love him back in my own way. But that is like him asking me to breathe. That was so simple. Loving him back has always been effortless to me.
Even when we had children and life got harder and love got layered, it was hard, but loving him to the core was still effortless.
I can read his heart. He's my language. The only language my heart ever knew. So, instinctively I know how to reach him, how to love him. How to touch the back of his neck when we're driving the car, playing the cloud game with the kids. Little ways to signal to him when people are around, that I love him better than anyone else can. He reads my signs. He brings them up after when we are alone.
We're a team. United. One. Before we were born. The most breathtaking thing about meeting his eyes for the first time was their familiarity. It was like I knew him for eternity. Loved him for eternity. I cannot explain the feeling, but I pray everyone gets to feel it once in their lifetime. It was empowering and breathtaking and yet I felt powerless and hopelessly in love, in the most beautiful way. I knew he'd stay.
I have lived an eternity since that day. In many ways, I feel older than my four decades. I have learned so much. The one thing (saddest) I have learned is that 98% of people will let you down in this life. They won't necessarily mean it, they are just looking after themselves, but they will tear you to pieces while they are just "getting their shit together". People will gut you after loving you for so long and leave you with the weakest of "sorries". Our selfishness is horrid, and it hurts. Ugh, Even the closest friends, decades of togetherness, leave...and for the dumbest reasons. I feel horrible saying it, but many let you down. I'm included. But T is the 2%. He never was with the majority when it came to me.
He is the the ONLY person who has never let me down, walked away, needed to rest. Never. Not once. Miscommunication and disagreeing? Yes. But he has never forsaken me. He always put me first. That is way more than I could ever ask of ANYONE, including my parents. You can't always be one person's priority, and yet, I have always been his. When I was lost in France with no phone, TONY found a way to save me. How the heck did he do that? He is the only one that has never asked me to wait while he went off and figured something out or took care of something.
As his partner, however, there were times I knew to tell him to go...take care of them...I'm here. Because I love him, I know when to push him out the door to go tend to a world that is boundless and needy. I am not the perimeter, the boundaries and I am certainly not the center. And yet, for him, I am. So I love him enough to push him out, to make sure he lives the life he deserves. Despite those moments, he's made me feel like (perhaps "understand" is a better word) he doesn't need to go much further than me. He arrived long ago. So we've come to a compromise - he acknowledges there's a universe beyond me and this. I acknowledge I (we) am his. And then we laugh because it all sounds so silly.
In this world nothing is enough for anyone, and yet he has always shown me (us) that he is full up. Far enough. I've been loved up. I'm grateful. Most people are capable of being happy with what they have - always wanting more etc. He's always the first to say he has it all, and he certainly doesn't mean money. That's an incredible way to be. That is what I pray my children see.
But other people see disease first. That's okay, that's what I write about. That's natural. BUT, they don't realize I've led a pretty perfectly imperfect life because of him. Do you know what it is like to wake up next to someone for so long and know the good in them, the perfect, unconditional love they give? Imperfect conditions always, but I have him. It's still overwhelming after all these years. So it never occurred to me that we got hit hard with some unfortunate circumstances. It just didn't matter because I have a pretty perfectly imperfect love. Other people remind me of the struggles or tragedies. I tend to forget otherwise.
Every year with him it seems I go the opposite way of my friends, marriage wise. I always think - Another year. 365 more days. Thank you. I pray. Why me?
Most are thinking this isn't enough, I wanted more, We are so different now, We want different things, and my heart hurts for them. I was dealt a different hand. I don't deserve any more than they do. If anything, I deserve less. I never said Why me? because of MS. I have only said Why me? when it came to receiving T's love.
Why me?
I do not know.
I know how it ends though, and I believe through Christ we will be with each other eternally. But there will be separation first. Not a day goes by when my heart doesn't do this little quiver thing it does just thinking about it. We will be parted until it is time. So every birthday is big to me.
I have loved Tony in my 20's, my 30's, my 40's. I have held his hand when we both thought he was passing. He's held me, carried me, laughed with me as we've watched my body slowly passing. My symptoms are infinite and degenerative and finite. We know what finite is a euphemism for. He doesn't flinch. He does what he needs to do, loves me, loves our kids, trains his arse off and works FOR US.
He doesn't waste a second.
It's a strange thing when my symptoms get worse as we progress because my husband just gets better at ... everything. It's like he's outrunning, outcycling my MS.
I gave him my hand in my 20's. We gave each other babies in our 30's. He gave me room for my dreams, space and understanding to achieve them. Writing and books and advocacy would not be possible without him taking care of everything in the background, unseen. No applause. He gave up a life of luxury for me (luxurious enough) for a chance at managing my illness. Never thought twice about it. He was crazy - he just took my hand, we closed our eyes, and we jumped into the unknown. He's a man. He is fearless when it comes to our family, and he is so freaking handsome. I want to say hot, but that sounds cheap.
How the heck do you say thank you for that? How do I thank his mother and father? How do I thank God? What kind of gift do you buy someone who has been the greatest gift you have ever been granted?
Every birthday he celebrates I feel a bit selfish. I celebrate the gift that was given to me on this day. We both get gifts on this day. What we have been granted is beyond what most get. Most don't get even a second's glimpse at this type of love. Why me?
Most people spend their lives trying to help us, feeling sorry that I'm sick, that we struggle a little harder to make ends meet because of the career I lost due to illness, just knowing how this will progress. They feel for us, and it is kind. I'm always a smidge humbled, but frankly confused too. I spend my life feeling sorry for everyone else, MS is peripheral, because I was granted Tony. He's pretty perfect.
Life has been imperfect, there has been suffering, but it's just peripheral because I got what most don't - the most perfect love from a man who doesn't want a spotlight or a microphone, he just wants to come home to cook us dinner. I have been granted everything I couldn't have dared dream BIG enough because God wanted me to meet my other half in this lifetime. The most important thing in my life, the only thing worth living for, to me (many feel differently), was granted. True love.
Maybe that's why I believe in miracles? I live with one. What you see is real. He is like this almost all of the time (people see us on social media and say "for real?" Yes. For real). So don't feel sorry for us, please, and thank you to all of who have helped us, but I have always been less aware of the struggles we have and more acutely focused on the one simple truth - the birthday boy's love is mine. To eternity and back, I will never know why.
I think I have gotten it out. Happy birthday to the most wonderful man I have ever crossed paths with in eternity. Good morning birthday boy, and good night. I bet the first day of forty-six is a good day to ride. You have so much love and karma and faith at your back side. Get out there.
