Hamilton: What will our play be called ?!

Thank you for seeing me in this way, for delighting in me and in us. It has literally saved our emotional lives. We had our physical lives before you, but our emotional ones are taking such beautiful shape now. And I want to write about it. I want the world to know your bright love. And I what we have created here. 

The image suggests perhaps a playful post about our experience in the city. Wouldn’t that be a more pleasant read ? Perhaps it would, but it wouldn’t be written by me then, at least not tonight. 😉

This blog post is a letter I wrote to my wife tonight. Whether or not all things are meant to be shared I think there is always a power in it for someone. This letter bled straight from my fingertips, it fell onto the page in waves of truth that couldn’t make their way out fast enough. A catharsis. Isn’t it always. If someone else has a different experience with those words who am I to stop them.

Clicking publish has always been an act of bravery…. one I never gave myself much credit for. Warning it begins with graphic Crohn’s Disease material exactly as I experienced it.

I had a stomach episode tonight unlike anything I’ve ever experienced. I thought I was going to have you have to call 911. I almost screamed for you. Literally. I had visions of me passing out and dying on the toilet. I woke up doubled over completely, and I mean completely. I hobbled to the toilet. I didn’t know if I would vomit or faint. I felt like all 3. I felt like I was going to have to poop but didn’t know what thing would come first. It felt like I was being ripped in half. My shirt was completely soaked, completely, and contrary to the scary fast heart rate I will have usually during an attack my heart felt like it couldn’t even beat, it was low 50’s. 

I just held on and tried to breathe deep as I could through the waves of pain and head swimming until finally I pooped literally probably 3 toilet bowls full. It wasn’t all at once. First was getting the hard part out, and then a ton came. 

By the time I was done I was left shaking and freezing and now I’m more wiped out than you can ever imagine. I just can’t even quite describe the pain.

A couple of things happened. One, I felt a tremendous wave of compassion for V and guilt at not feeling more present. It’s like I can’t weather watching her suffer and I must because I’m mom. What a confusing thing. And two, intense fear that having not taken my injection even for a week has thrown things into some terrible state with my health. What if?! And what if V is in for a lifetime of chronic suffering with her tummy that impedes so much of her adventurous self. My god that will break my heart. And then that I really do love my kids moment. Well of course I fucking do?! How could I ever be so unkind to myself, ?’ To not give myself this benefit of the doubt. 

And then I think of the good thing that I’ll make sure she is safe and supported forever. Never scared she won’t be able to support herself. And then the realization that I’m a steadfast supporter and provider and that I’m creating / have created that from scratch. 

And this is literally what a profound RE frame in thinking looks like. I’m strong and proud and safe and I’ll keep my family safe, not some impulsive person hanging by a thread.

I’m creating something beautiful in myself and for others and it’s my story. My legacy. What I want people to say about me, when they tell my story like Eliza did for Hamilton. What will they say?! We all wonder what people will say.

This makes me think of you: do you know all anybody says is nice things about you?! I always wanted to be that person, but I make too many waves, take too many risks, and don’t think enough about how I’ll make someone feel. You think too much, and I not enough. If you take us both you have the perfect person 😉 boastful? Perhaps. 

I make people uncomfortable, but do it with good intentions lol. Don’t they say the road to hell is paved with good intentions;) I make people uncomfortable by pointing out what is so readily visible to me, that for others it takes them a lifetime if at all to notice. A gift and a curse. 

I wonder if V felt a fraction of how I felt just now. If she did I feel terrible for her. I’m gonna root around in your magic bag of goodies, the bag leftover from our dead dreams (to be dramatic and truthful) and see if I can find some life giving electrolytes in the form of Gatorade to settle this tummy. It’s feeling like knives are raking it currently and I can’t be out of commission this long. 

If anything happens to me babe please tell my story. I need my story told. The need is getting fiercer now. I need people to know how hard I fought just to be ok on a daily basis and my kids to know how strong their love makes me. They are the fuel to my fire, and everything that makes me the person that I am.

Every person I’ve ever helped has them to thank. 

And I have you to thank. You’re such a source of comfort to me. Speaking of…. I’ll need to restock our sick supplies. We were so fortunate to have all these. Though the reason we do and they are unused is still excruciating. 

Babe I know your process is different but please know that if this didn’t happen I might not in some really profound way have truly known how much I want it. How I want to enjoy the tiny new life that we create rather than ever viewing him or her as a burden. And my life has already been so heavy so long, any small thing sometimes does feel this way. But in part due to experiencing this loss with you, I know even more profoundly how much each second even is worth. 

I do in a fucked up way feel it is meant to be this way. This sense that everything does happen for a reason, and not that that’s just something we say to make sense of things when they are too fucked up. It makes me believe in destiny and magic. 

Does that mean we couldn’t have done without this toll to our hearts, this wound, and these scars… of course not. 

But life would not hold as much meaning without the whole picture, the whole journey, and my life now is beyond filled with meaning. 

While I don’t plan on going anywhere soon, I am satisfied with my life right now. I need you to know that. I don’t regret for me or be sad for the rest of my unloved life ever, because I have lived it to my fullest already. I do want more of course, immense amounts more. But if it wasn’t in my cards I didn’t miss a thing. I knew exactly what I was doing. 

I want you to find the same feeling, but in whatever way Or path that’s meant for you. That’s my dream for you, never give in to self defeating thoughts, ones that lack compassion for your full journey. 

If you did ever lose me I want you to live on for me in the way I would have. Carry my legacy and be for my kids what I would have been for them. You are up to that task. No one is as well as you or I wouldn’t have picked you. They will need you forever. 

I don’t plan on going anywhere, but we never plan for that so I want these words down. I don’t care what laws or rules or fears or whatever. We have something very special here and blood relation has nothing to do with it. We must trust that. You are an irreplaceable part of the kids healing now. You’re already written into the story. And I would never want to let you be snuffed out in the event of my demise. And anyone who would try would do so out of ego or pride etc, finally able to have their kids back from my evil clutches you know 😉 but you know better. 

You’re the best thing that’s ever happened to us. Yes little ol you, it’s true. That’s a truth. And it couldn’t be without you being so much more than you see when you look in the mirror. That distorted perception is your only enemy, it kills more dreams than a semi-automatic with unlimited rounds. 

I hope my kids will delight in my letters someday when they are old enough to read how my mind worked. Find, keep, and appreciate them all, because they are who I always really was inside and kids know so little about that.

I’ll never know much about who my parents really were inside, so much is a mystery, especially my dads side, and my mother’s, a tragedy. So for them to have this insight. To know my mind intimately. Incredible.

Wow so all this feels like a product of a near death experience. Listen honestly. It may sound dramatic, but this episode was no joke. And all this sweating and gross (being on prednisone and scared) the past couple of weeks has been really humbling.

There is a level of acceptance I am at, that wasn’t there before. 

My disease has carried a large piece of denial for the longest. I wasn’t willing. I’ve been in as much denial of it as I have how damaging my childhood was to me. I am reaching a stage of acceptance now, and it’s making me so much stronger. So much more at peace and strong. Someone that you will feel proud and safe to have a baby with. Someone stable that will enjoy that adventure with, not resent it, or fear it, or feel guilty about it because I already have kids.

That is at least the take home I’m recognizing from this tragedy. 

I will get to move forward without a doubt in my mind, and for me, that’s like having rebuilt an entire nation after its downfall. I’ve been a shaky entity bordering on panic for as long as I can remember, to be emerging this strong, still, solid force of love and compassion is unbelievable even to myself. 

I am surprising myself a lot lately. The strong I always identified as prior was a sort of forced kind of strong, a necessary one. This strong now is the accumulation of weathering storms with a sense of grace rather than a frenzy or a panic. 

It’s a strong I am satisfied and proud of, not one thrust upon me without my consent. It’s a soft kind of strong, and I can’t wait to hold our baby in these new arms made of this.

Every time you grace me with your vision of seeing the loving child inside of me. I can see when you see her, I can see her too, and it brings powerful healing. You bring that to me. 

Thank you for seeing me in this way, for delighting in me and in us. It has literally saved our emotional lives. We had our physical lives before you, but our emotional ones are taking such beautiful shape now. And I want to write about it. I want the world to know your bright love. And I what we have created here. 

What if someone else could find this place (when they couldn’t before) because of our story? Or was able to believe in their dreams?! 

Bliss. 

My tummy has burning remnants of the suffering I just went through and I can’t even be bothered to focus on that. I’ve too much shit to do with my one life. Thank goodness because otherwise I’d crumble into a little ball of stress and worry and take days to recover. 

I don’t have days anymore to spend in that way, there’s too much work to be done.

Every word on every page for every day of my life…. are for you….

Now I am going to curl up as close to you as I can and let your breath lull me into a deep relaxation, and help the pain melt away. 

All the love in my heart 

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