The featured speaker was Glennon Doyle Melton, writer of Carry On, Warrior and the just-released Love Warrior, author of the wonderful blog Momastery, founder of Together Rising, a non-profit that works to improve the lives of women in crisis across the nation and the world, and mom to three kids, who have had to get used to their mom being the open, truth-telling woman that she is.
If you are a mom of a certain age (and possibly also certain political leanings), Glennon is well known to you, and possibly adored by you. If you haven't heard of her, visit her web site today and see what the fuss is all about. In a nutshell, she is a woman who unapologetically tells her truths, who addresses bullying, sistering (caring for your friends in good times and bad), how hard marriage is, how hard motherhood is, how hard LIFE is, and who still has hope for the world and love for all people.
Right now, her life is a bit of a mess (like many of us). She just finished her book, Love Warrior, about her husband and her's fight to save their marriage and working through the rocky parts. After finding out about his infidelity, they decided to see if their marriage was worth saving, and they stayed together for several years. But right before her book came out, right before she went on this book and speaking tour, she decided it was time for them to separate and divorce.
As you might guess, the publishers and other powers asked her, "Do you want to keep this news close to your chest? Do you want to wait until after you've finished publicizing your book on MARRIAGE to share that your own marriage is now over?" And she said, "No." Not only would her integrity be shot if anyone had found out, which in this day and age, someone probably would have, but that wouldn't have felt right to someone who believes so strongly in telling the truth, even when it hurts.
Glennon coined the word "brutiful," which is a combination of beautiful and brutal, to explain how the world is to her and to others like her. There are those of us who are just more empathetic than others, who feel the world's pain more than others, and she is a shining example of how to get through the painful parts to get to the good parts.
Right now, she is promoting her book, and being as open as she can be about her marriage, because even when truth needs to be told, life also demands that one be mindful that your children are listening and other people's children are listening and learning from how you treat one another. From what she has said, (and the cute Instagram photo her ex-husband put on his page to celebrate her book release), their separation and divorce is an amicable one, but even if it wasn't, there is nothing to gain from being hurtful and petty and saying things that feel good in the moment but not so much afterwards.
Glennon turned this love for others into a growing non-profit, Together Rising. It began very small - one sister reaching out to Glennon to tell her about one of her sisters who was going through a rough patch and needed help to make the holidays a happy time for her children. Glennon asked for help on her blog, and sisters answered. Now Together Rising still helps women and families in need during the holidays, but the non-profit also helps throughout the year when a sister needs something life-changing immediately (a family vacation for a woman dying of cancer, accessible vans for two women who were sick and needed transportation, and service dogs for children with Type 1 Diabetes, autism and Down Syndrome). She calls these requests for help Love Flash Mobs. Women give just a little ($25 or less- you aren't allowed to give more!) to help those who need it, and the community always comes through to help. The non-profit also receives funds from companies, big and small, who believe in what they are doing. What's more, Together Rising also helps schools who are trying to serve special needs children in the U.S. and refugees in Europe through several organizations who are providing food and shelter and medical care.
I love this quote by Mother Teresa - "We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop." That is what Together Rising is doing, being that all-important drop in the ocean. And that is why Glennon is my hero.
I have another hero right now, too. Her name is Adrian, and she has four children. You can learn more about her story on her blog, Tales of an Educated Debutante. Her youngest, Amos, has special needs. He will turn three soon, and can only say Mama. He had surgery in the last few months to "free" his tongue. You see, his tongue was attached in a way that made it impossible to move. This is so unusual that no doctor or therapist had noticed or thought to check. But Adrian is a Mama Bear (you have to be, when you have a special needs child), and has kept exploring options, trying to find answers for her child and for herself. Until you have a child with special needs, it is hard to fathom how frustrating it can be to find answers. Then you question, when do we stop? When we do say, this is how he is and the why isn't so important, so let's just focus on what he can do? Every day, you question whether all of the frustration of seeing another specialist, trying a different test, is worth it. Every day, you try to enjoy life and not let the uncertainty get you down.
Right now, Adrian is fighting with her insurance company. Every policy has certain limits on the number of visits to therapists. Even when the doctors say that this therapy is vital to a child's development, there is a limit each year. Which means that parents pay out of pocket, because who is just going to walk away and say, well, we'll pick up again next year and let our child stagnate for several months. Except some parents cannot pay, and that is their only option. (But that is a whole other story.)
Adrian wants to change that. Yes, for her son, but for all of our sons and daughters. She wants that limit removed so all children can get the help they need, whether they need physical therapy, occupational therapy, speech therapy, or all of the above. Imagine if your policy said you could have 26 visits a year - that means that after a couple of months of therapy, your insurance company would no longer pay. Each of those therapists charge a fee per hour. I know from our experience that OTs in our area charge between $100 - $250 per session. If your child needs even one session a week, that adds up quickly. Amos needs several sessions a week (between PT, OT and speech).
Adrian has studied her family's plan. She has three other children, herself and her husband, all of whom do not need those therapy sessions. If the limit cannot be removed, then why can't her youngest son use his siblings' and parents' allowed therapy sessions?
Beyond that, the insurance company has denied several of her claims for needed medical equipment or treatments, saying they aren't "necessary." He can grunt and point and make some noises, so he doesn't really need adaptive equipment that could help him speak through a computer, the insurance company says.
This issue is a serious one for all parents with special needs children, because who makes the decision about what is medically necessary? It often isn't a doctor or nurse or medical professional (or so I've heard). The medical professionals understand the need for therapies, adaptive devices and treatments, but their opinions are not being sought or honored.
Recently, Adrian got a chance to apply for a study with the Undiagnosed Disease Network. Through Duke University Hospital and other hospitals across the country, the National Health Institute (NIH) funds research and treatment of patients with no known diagnosis. If Amos is accepted into this study, it will mean one week of tests from specialists, anything they think might unlock the mystery of his developmental delays. No fighting with health care companies, no waiting for approvals, just the best health care that the hospital can provide. What a blessing that would be! So Adrian is waiting for what she calls her "golden ticket" to arrive, and I know there are many, many people who are hoping that their invitation to participate comes. We also hope that there are answers for her and her family at the end of the week.
Here is a mom, doing all she can to improve the life of her child. Here is a mom, spending hours on the phone with the insurance company each week (sometimes each day). Here is a mom, pursuing any avenue that might give her son a chance to thrive. Here is a mom, who is conflicted sometimes about how much of her time is spent on her youngest child, who obviously loves her three other children, too. Here is a mom, trying to enjoy life with her family, and not be run down by all the hoops she has to jump through to get the services her son needs.
Those are my heroes - women who are truth-tellers, who hold onto hope, who live life with joy and love, who fight for what they believe in. Thank you, Glennon and Adrian.
