Neurofibromatosis

Millennial Mom Takes on a Whole New Meaning

Somedays it’s hard enough to just be a grown up. Manage money. Take care of your home/apartment. Keep up with your car. See your friends. Perhaps take better care of yourself – work out, anti-aging rituals, eating healthy. It’s a lot.

Throw in a full-time job and you are really busy. Plus a lot of added stress, wanting to perform well, move up the corporate ladder, make something meaningful come from those hours you are spending doing something you were once so passionate about.

Add a spouse/partner or challenging dating life (which so many encounter in the lovely world of tinder/hinge/online dating). Things get rough. Sometimes it’s easy to think about just throwing in the towel. But you never do. You persevere because you deserve more and having a partner or even a best friend is a relationship that is worth putting your heart and soul (and sometimes tears) into maintaining.

Then, add some kids. They make your world go round. Make the hardest days seem close to impossible and yet so full of love. Make you want to cherish every single moment, record each sweet nothing, ridiculous story they tell you, and every diaper blow out that happens RIGHT as you are on the way out the door for a big day of work. It’s funny. It’s not going to last forever. I would literally do anything thing for them.

Then you get the news that one of your kids has an illness. A disorder. A disease. That there is no cure for. And then, this friends, is something you truthfully cannot understand. Cannot fathom. Can’t pretend to get. Until it happens to you.

I promise you this – because I have always thought I ‘feel’ so much for other people, I’m incredible intuitive and extremely empathetic to what others are going through. And I will always try to be so. When I’ve learned about friends or even strangers children who are facing challenging diagnoses – my heart has broken. Or our elderly neighbors who’ve lost spouses. I’ remember their loved ones birthdays once they’ve passed, I remember their death anniversary, I remember holidays for these people. I reach out when others forget. I’ve cried for them. When it’s someone’s child…. I’ve researched to educate myself on what their future holds. I’ve racked my brain trying to think of the right words to say, something to do to make their lives just a bit easier – whether it’s paying (money I don’t have) to hire them a cleaning person just once, or make (HA, kidding- buy) a dinner, watch their other children during appointments, give the parents a night away… offer a shoulder to cry on. Help find the right specialists in the right area. Take their filthy winter car that shuttles them to appointment after appointment to get a car wash or oil change. I mean, anything small that would take away from the never-ending to do lists. I thought I could understand and feel what they were going through. I tried so hard. I always will continue to do just that. I wanted to feel how they were feeling to support them.

But guess what? You cant. You don’t get it. And god willing, you never will. Because it’s a club you never want to belong to. It’s a club of so many ugly cries, so many how could this be happening to such an innocent little baby, how in the world is this happening to us? How will I continue to work full time, and provide for my family the money we don’t ‘want for extras’ – but the money we rely on to survive and put food on the table. How can I keep up with the doctor appointments, how can I stop beating myself up for the fact that I spent 5 minutes cleaning instead of trying to help my son do physical therapy exercises. How can I afford to move back toward my family that can help us so much more, when my husband needs a teaching job that is so few and far between in his particular area of expertise? How can I make my older son understand why Patrick falls when he tries to crawl. That he isn’t talking, or why he grunts at him, or doesn’t sleep at all, or won’t eat food yet… or falls headfirst in the tub and can’t lift himself up, or doesn’t quite have the balance the other kids have in the baby room. How can I be a wife to my husband who probably thinks I don’t care about our relationship anymore? How can I stop my worries and just let each day go by and celebrate the small victories. How can I help find a cure? How can I respond to other people who say things that are so hurtful when I know they are trying so much to say something helpful? How do I keep going day in and day out when sometimes I just ugly cry myself to sleep?! How can I stop worrying about whether my son will ever have a chance to date or get married? Or go to college? How come I think about retirement and hope that I can retire somewhere that will allow him to have the best life possible? How can I keep breathing and have my work friends not know something is wrong? How can I help people understand that minimizing what I’m feeling is the worst thing you can do?!

I don’t know. People who know me – know that I am intense. I am a planner. I like to have things figured out years in advance. But right now – control is something I don’t have. It now seems like such a luxury. And I’m learning to come to grips with the fact that it’s okay. If I can simply learn to appreciate each day, each hour, each moment – things will be okay.

I am learning. So many other parents are learning. So many other moms are facing the most god awful soul-crushing diagnoses that will forever change their life from this moment forward. And together, we will come to grips with our new reality.

We are not just millennial moms anymore. We are so much greater than we knew possible.

It will be okay.

-Megan

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