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These are some of the memorable one liners I have heard over the past seven years of mothering Desi. And there are more. And then there are the meetings I get to have with principals and babysitters and local rescue departments and playdates to prepare those around him for what will hopefully never happen, all the while smiling and trying not to scare anyone away from him. And there are the emergency room visits where I know more about my son’s medical conditions than those caring for him.
But then there is the National Institutes of Health and the researchers and clinicians there who are so wicked smart and attuned to cases like Desi’s, who are willing to tell me that they don’t know what is wrong, but not to give up. And within the NIH is my son’s version of Disney World: The Children’s Inn, where his face lights up when he walks into the lobby and searches his mailbox to see what prizes have been left for his discovery. Where he walks around like a king, narrating his way through the playrooms and kitchens, stuffing donuts in his mouth and flopping on the bed in our room. Where he is so proud to be amongst the bravest of the brave. Where he learned first hand why we can’t stare at kids who are outwardly different. Where he played with an 8-year-old little boy whose mother was told he wouldn’t make it to 10.
You see, Desi gets it. He knows more than a 7-and-3-quarters little boy should know. He knows to ask for something to squeeze as they take 30 vials of blood, boasting to the phlebotomist that he doesn’t cry when he gets his weekly injections from mom. The Inn is his other home. It is where he feels part of. Where even though he doesn’t look like one of the “sick kids” he still knows what it feels like to be one of them. And what Desi is most proud of right now is his mom, because she, yes I, have pledged to run the Marine Corps 10k on The Children’s Inn team, a race to raise money and awareness for families that come from all over to stay at the Inn while they walk the long halls searching for answers.
There are no ribbons for what my son has. He is undiagnosed. When the doctors hear hoofbeats they are trained to think horse not zebra, but Desi is a zebra. And they don’t make races or bracelets for zebras.
This is the first time I have come across anything that directly benefits children like my son. Did I mention I hate running? Did I mention that I raised my goal so Desi could feel the support? But Desi hates bloodwork. And doesn’t really love to miss school, because he’s only a first grader and still loves to go. And he hates wearing his helmet on the playground, because he knows he looks different. So, I’m going to run for my son and all the families like ours and I’m going to show up for him and let him know that we grow stronger from our weaknesses. That our challenges are actually our blessings and that even if we don’t know what is wrong with him and I don’t have any answers just yet, that there are people out there rooting for us, paving the way, and while one more race and one more donation might not be the change that will fix all these broken pieces that it will make a difference to rare birds like Desi. #RunINN4Kids
The Children’s Inn at NIH provides free lodging—and so much more—to over 1,500 children that stay there each year while participating in clinical trials at the National Institutes of Health (NIH), the nation’s premier biomedical research institute. Each mile and each dollar raised from Team #RunINN4Kids fuels access to the research that makes childhood possible for the more than 13,000 kids, traveling from all 50 states and 94 different countries, who have stayed at The Inn. The Inn provides not only free lodging, but also meals, more than 1,300 hours of educational, recreational and therapeutic programming each year—things like homework help, field trips to the monuments in DC and even summer camp for children that could never otherwise attend—all while enabling families to develop friendships and learn from others who know what it’s like to seek the promise of hope or a cure for a seriously ill child.
I found myself Googling, “Should I stay for the kids.” I begged God to tell me what to do. I cried daily as I walked around my perfect house. Six years of marriage counseling, three beautiful boys, no black eyes, no adultery, no gambling and I was dying inside, every day.
I never knew how lonely one could be in a marriage, lying in bed next to each other, not touching, on our phones, like passing ships. He was a kind man and a good father. How I hungered for connection and wanting. Quiet clenching jaws and pleading ignored. But we had these little kids and divorce would destroy them. And divorce would destroy him. So I would stay. I chose to stay, over and over. And each day, a little piece of me died.
Sitting across from my two besties, they looked at me and said, “Your light went out.” And that was all I needed. I was trying to stay for the kids, for him and in the process I lost myself. Against the advice of family and friends, I left my perfect life and chose me.
And what has become is a beautiful mess. No more secrets, no more wrapping paper, no more perfect Facebook posts. The legal process of divorce was brutal and living all together while trying to sell our dream home tested every fiber of my being, but the only way out of this sh#t tunnel was through. And through I have travelled.
My boys are thriving and their life might not look the way we had planned and I had dreamed, but they have a mother who shines from within, once again. I was told many years ago to always find the gifts, that I must find the gifts in every situation, that it would be my salvation. Oh and there are many gifts to be found.
10 gifts of a messy divorce: (in no specific order)…
1. You get to really, truly know your ex
2. You get closer to God
3. Your real friends will be all who is left
4. The guilt over making the decision will be removed, completely
5. You’ll be in the best shape of your life from the daily pounding on the Stairmaster or treadmill or pavement
6. No more fights over how you load the dishwasher
7. You’ll discover how resilient you truly are
8. You’ll write more, read more, cry more and dig deeper than you have ever before
9. You’ll know exactly what to pay attention to in your next relationship, exactly what matters
10. After the money, the custody, the schedules, the legal bills, the lost relationships and words of anger are removed the authentic you will be all that is left
If you put a gun to my head in those brutal, gut-wrenching months of back and forth between my heart and my mind, I always knew what I would do. When I looked in the mirror, I always saw the truth. We can hide it in a picture, or mask it in a post, but the mirror never lies and when we live our life with authenticity, mistakes and beautiful messes all that is left is the light.
Since writing my first Huffington Post piece, My Light Went Out I have had a ton of messages and tweets and feedback. The messages thanking me for my words, the tweets casting judgement and blame and the angry, name-calling comments about my selfish choices as a mother.
Putting myself, my soul and my words out to the universe comes with the opportunity for all of this. And all of it is a gift. I am beyond grateful for the platform to use my voice and possibly be able to help others find the courage to live their truth, whatever that truth might be.
If I measured my worth by other people’s opinions of me I would be hiding under a rock. But I’m not, because it isn’t my business. What others think about me or say about me is not my business. And I certainly can’t take it personally. One of the lessons I have learned along the way is that everybody has a story. Who am I to judge?
My friend, Sarah Marcus-Donnelly , often reminds me that my only business is to behave. Behave and take care of my boys. Be kind and walk with dignity. And so I walk. Along this uncertain, uneven path. I walk. The only way out is through. And in the darkness there are gifts and there is light.
Early on in this process I was sitting with my friend, Scott Simon -one of my lighthouses, he gave me one of my greatest gifts. The North Star. He told me that my boys need to be the North Star for me and their father. That we will get lost as we attempt to sail these rocky, unpredictable waters of divorce and without our North Star we could get very far off course. I loved it so much it became a tattoo on my inner forearm to remind me.
This concept was how we told our boys about the divorce. We explained that when sailors get lost and they don’t know where they’re going, they can only focus on the constant, the only tool that can guide them in the dark. We told them that they were our North Star. This has brought us back again and again when we want to stand our ground and dig our feet in. It has brought us back to the moment. Back to our focus.
The North Star. Three little boys who look to us for guidance. Three boys whose story of “divorce” will not be written by the tweets and comments made by those who are angry and stuck as victims. The story of divorce will be written by their mom and their dad and we choose to put aside our resentments and hurt and write a new story.
It isn’t easy. There are times when we want to sail head first into the waves, but then the question tugs at my heart. “What do I want to teach them about love? About forgiveness? About patience?”
Many asked why I was so vague with my reasons for my light going out, for my reasons to leave if I had no black eye. Those details remain locked and sacred as I focus on the North Star. They are not anyone’s business. I am writing a new story for my children and the only response I have about my role as a mother is this one: I mess up, I lose my temper, I forget things, I have been known to swear, I am silly and a bit like Dory, but one thing I know for certain is I can answer the question every parent asks themselves.
“Am I a good mother/father?”
The answer is a solid, unequivocal, “yes.”
Making the decision to leave my marriage was the hardest decision I have ever made in my entire life. And the most honest.
Once we know the truth we can’t un-know it. Once we find out that there is no such thing as the Tooth Fairy we can’t place a tooth under our pillow and hope for a miracle. The only question that remains is not what are we going to do about it, but IF we are.
When I was pacing back and forth within my self-imposed soul crisis, I didn’t know, I couldn’t have known how it would all turn out. I only could see the darkness. The unknown. The fear, the guilt, the unanswered questions and warnings. I didn’t know what would become of me, my kids, my ex, my perfect life.
I leave out many details. I leave out the truly brutal reality of living in the same home with your soon-to-be-ex while going through the grueling process of divorce. I leave out the fights with family. I leave out the lost relationships as those who stand on the outside, judge and condemn my decision, based on their own ideas of what is right and what is wrong. I leave out the pain I feel as I kiss my eldest on his forehead and spend his first ever birthday in 10 years of birthdays in a separate home for the weekend. I leave out the financial fears, the painful talks, the emails to guidance counsellors, the selling of our dream home, the packing of a life, the division of every last thing.
It is the fear of taking the first steps into the dark. Of hallways we have never been down. Of the unknown. Of how will it all work out? But, the pain of staying was larger than the fear of leaving. Nothing changes, nothing changes and everything changes, everything changes. I will never again allow fear to decide my fate.
I couldn’t have known how long the pain would last and how I would feel and how they would do. I couldn’t have known. The only way out is through. The becoming. The pressure. The unfolding. I yell at and kill spiders. I scrub the pots I never thought I could get clean. I touch boilers and look into sump pumps. I am doing this. I am doing this. Not always well, but I’m doing it. The laundry piles up. The house is not as clean as it used to be. I swear way more. But, I am a better parent. I give more of myself then I ever did before. I am happy. I am more me than I have ever been.
My kids are happy. They love our new neighborhood and new school. They are tired, for now, of talking about their feelings about living in two houses. For now, they are thriving. And I am not holding my breath, because there will be trials ahead. And we, their father and their mother, will deal, because we are guided by the North Star. Because they need our love. Because life is not linear. Because we get to write our own story.
I’ve heard all the sayings.
“You never know how strong you are until you get in hot water.”
“You’re never given more than you can handle.”
But the one that rings true for me is, “The only way out is through.” And a dear friend adds, “there are no shortcuts.” And there aren’t. There is no way around the pain, the work, the effort the perspective shifts needed to pull ourselves out and through.
Kissing my boys and sending them off with their dad is tough. Not getting to be there for each and every moment sucks. My best-friend reminds me that this path is not for the faint of heart. That just because I am smiling and laughing doesn’t mean that this choice and this path is free from challenges and obstacles and pain. But what path is?
Since writing my other pieces I have been asked again and again to alleviate the fear of the pain and the fear of the hard times, but I cannot. I once lived a life that was not fully honest and today I refuse to wear any wrapping paper. I tell them that whatever choice they make there is no easy path. That staying or leaving will both require work, sacrifice, fear and pain. That our children will be affected either way.
There is this delusion that if I stay it will be all better. Or if I leave it will be so awful. But it isn’t so black and white, nothing is so simple.
I was reminded of this a few weeks back when my perfect, sweet, quiet son came to me and finally admitted (after I pulled it out of him) that he was sad that his parents don’t live in the same house. That he was afraid to tell me. That he was scared I would be upset by his feelings. And as I sat there and heard my own heart break I did what I knew was right. I focused on the North Star and called his father so we could all talk about it together. And because we do our best to focus on the North Star (our three boys) my son was able to have both his parents help him through.
And as I processed the feelings and how powerless I was and how why couldn’t I make this work so he would be free of pain I realized that what I was trying to do was to create a world where my son would be free of pain.
But that world does not exist. And then it hit me. The pain is the teacher. The pain is where we grow closer to God, closer to others, closer to our truest self. How my childhood was not free of pain and how that pain helped me to become who I am today. How my other son, who has potentially fatal medical conditions, taught me how to be the mother I am today through his trials. How the strongest and bravest I know are those who are walking through unimaginable hallways and how they only become more beautiful and real as they continue to walk.
I don’t have a magical answer for what anyone should do in their struggle. I only know that the soul needs to grow and the soul needs light to do so. So I lean towards the light as I keep walking through. “The cure for the pain is in the pain.” Rumi
Below, the Cleveland, Ohio-based writer looks back and writes a letter to the 26-year-old bride she was on her wedding day in 2005.
Dear blushing bride,
Regret nothing. You are beautiful and 26 and full of hope.
Your parents gave you a fairytale wedding. All of the plans and details and centerpieces and flower arrangements culminated in an unforgettable day.
If a genie came to you the night before and woke you from your sleep to reveal what would happen in your marriage, things might be different now.
Out of fear and ignorance, you would not have gone through with the wedding if you had known it would end in divorce 11 years later.
But hindsight is not always 20/20. It does not take into account the minute details, the lessons learned, the perspective, the challenges or the joy. Oh, beautiful, Carly, if you hadn’t married, you would have missed out on so much.
No, if crystal ball showed you how this would end you might have not gone through with it at all. You consider divorce to be a failure. I am here to tell you, what has come from this union could never be considered a failure.
Today, you have three beautiful children because of this marriage. This marriage brought you to the place where you currently stand: a 37-year-old newly single mother who’s co-parenting with a man who you once wanted to spend the rest of your life with. The details of why you divorced are not up for discussion. Never allow anyone to call this marriage a failure. This marriage is not a failure.
Life simply happened. And life has a way of taking us down paths we never intended or expected.
Life has a way of changing how we see everything. Those three beautiful children are gifts from the universe. Those three beautiful children are half of you and half of their father. Never forget this when you look at their faces. They are your North Star. Let them always guide you. If you focus on them you will never be lost.
Walk down that aisle. No regrets, girlfriend, no regrets. God has you.
Carly, aged 37