The Song of a Broken Heart

Things are never as easy as people say they'll be. We love and lose then people convince us to love again. I've always been one to keep myself at a distance, from friends, family, lovers, confidantes. I've kept myself at a distance from the MTM community. I've kept my life a secret from many of the people in my life never knowing how to tell them what my life is like with a brother with an unpredictable lifespan. Never knowing how to explain to others the fear and heart break that accompanies your every joy and successful milestone knowing that others won't get there, not knowing if you'll reach the next.

Last year my heart was shattered into more pieces that I could count. I was dropped, from the highest height (or so it felt) by the person I had sworn my love to. Three years of one of the most unhealthy relationships of my life and just over a year ago (a year last thursday) I got a text that said some of the harshest things I've ever been told and I crumbled, alone in a new place without friends to save me from myself. This last year hasn't been the healthiest again. Learning to love myself. Learning to mourn and overcome. Learning to live without someone I thought I'd be spending my life with. I've opened my heart and been crushed then given a second chance and had it spat on. It wasn't easy. It hasn't been easy.

Last summer I also met the most incredible little boy. My boyfriend. The sweetest face that lit up when he saw me. A smile that could move mountains. The first MTM boy that I allowed myself to feel and love and be close to. I may never know what it was about him but he stole my heart. In the hands of a mere toddler I placed a huge part of my heart. His mom becoming a dear friend, the one that sent me my first care package when I needed it most, who told me their home was there after my first breakup in Illinois, who listened whenever I blubbered about being homesick. A family that even though new to my life became such a beacon of love. A little boy, that no matter how I spun it, brought a joy to my life like I haven't felt.

That same little boy, my sweet Louie, gained his wings and I haven't been able to process it. Like it doesn't make sense. I keep having days where I think to text his mom asking how he's doing, or I'm scrolling through her facebook page looking for pictures when it hits me that he isn't there anymore. Seeing his parents last night my heart hurt and yet felt empty. I haven't know how to mourn. Seeking the chance to burst into tears and have someone hold me until there are no more tears but instead I stuff the pain, heart break, and rage of his loss further and further down hoping I can ignore it. Bursting at random into tears in my car outside of my house waiting until the tears dry to walk inside, afraid someone will ask me if I'm okay. Cause there wouldn't be an answer.

This last year my heart has shattered twice in completely different ways. I don't know how to allow myself to be vulnerable again knowing that it can be taken advantage of or that another loss can occur. It's it really better to love and feel loss than to never have loved at all? Does the heartache stop?

I am scared. Terrified even. Every single day of what the pain will feel like if a death is closer to home. I can't turn my brain off for the fear of it. I don't know how to live in the good moments and the next planned adventures when in a second a "healthy" kiddo can be gifted his wings while the left of us are left wondering. How do people do this more than once? How do parents have multiple children? How do people open themselves up again? How do you find the motivation to just keep trucking along when running around or not moving at all are the only options that seem manageable? How do I stop the moments of random crying now that my life is slowing down to a "normal" pace? When you're too busy to breathe you're also too busy to cry, so how do you do it? I'm really not sure how right now...

It doesn't get easier...

I used to dream of a day that it got easier. Easier to be the one that walked, with the [mostly] working lungs, that could talk and move and dance. I used to think that being the one that "wasn't affected" was easier. I used to think a lot of things.

I think part of my "thinking" was always in things I was trying to convince myself. Granted I'll never know what it is like to be affected by MTM, I can only observe Javad's seemingly unwaivering chillness with 99% of everything. Today I am not okay.

I've said before, and will probably say again, I make a point not to get connected. I can't help but be attached to Javad, he is my brother after all, but I've been selfish and tried to prevent myself from getting attached to other people in the MTM/CNM community as well. I didn't want it to hurt. I didn't want to feel it if something happened. Well something happened today.

Just over a year ago at the conference I met the most amazing family. For one of the first times I did just feel like my expertise of being a sibling was needed but that I was needed. I spent most of the conference with this amazing family, bonding with the sweetest boy in a way I haven't bonded with another kid since my own brother.

We joked that Louie was my boyfriend. He'd flirt and smile at me, I'd hold his hand every chance I got. We cuddled and I talked while he looked on. He's a tiny, only a couple years old, but I felt tied to him in a way I can't explain.

This morning I got back to my desk after a meeting to one of the worst texts I've ever gotten. Louis had gained his wings in his sleep. A part of me broke. A part of me is broken. This part of my heart that I have protected for so long poured open like a flood gate and for the rest of today I have cried and struggled to hold myself together because this little boy that could barely hold my hand held a huge part of my heart.

I use to say that each death didn't get easier but it didn't get harder either. I lied. Not just a white lie, but a bold faced lie. The longer I am in this community the more invested in their lives, in our lives together, I get and the harder it gets. In the 10 years since Javad's diagnosis I have never been hit like this and I don't know if it will ever get better. I don't know how people get better from things like this.

Marie, Louie and Me

I think it was love at first sight from both sides

Louie and I at the conference

Louie and I at Where There's a Will There's a Cure Golf Tourny