As women we struggle with self worth, confidence, the inner critic. Grief and special needs parenting have been huge hits to my self-confidence, to my vision for the future. But deep inside I have met the me that God created. The one designed for the story I am living. There’s no mistake in the story, nothing out of place or unseen by God. She may not look like the woman I planned for, but she is home. In low moments I wish I wasn’t her, in high ones, I know I’m exactly where I’m meant to be.

It’s our first responders that bring us through the disorder to the transformation. It’s their love and the light that allow us to take the next step. They help us take a deep breath and realize we are not alone. We learn we can clean up the mess, rebuild, and finally rebirth ourselves into a new space.

But here’s the thing, once we’ve been helped by a first responder, the love and energy we receive calls us to be a first responder. We too can show up in the mess, and destruction,  grab a shovel and get to work.

And we are called to do just that.

Experienced first responders are those who have been rebirthed. Ones that have allowed the tumultuous winds and waves to refine them. Ones who are wide awake to the gritty beauty of life. Who walk the balance beam of joy and pain, of laughter and tears.

Today I want to give you one of the sweetest, most liberating gifts I’ve been given during the past five years as I’ve learned to live with the death of Ethan, the hardships that arose from his journey and now the acceptance of my son Bodey’s rare muscular dystrophy and many, many things in between. This gift has taken me from bitter to peaceful; from imprisoned to free. I want to give you permission to wrestle with your faith. Whatever deep, burdensome questions plague your heart, today you have the liberty to ask them.

Teach me God about your goodness. Show me an open space. Bring breath to my lungs and energy to my being. Show me that I can hope again. That I can see goodness. That my life is not a narrative of disappointment. Not a narrative of sickness. Help me to breathe easy. Just for a bit. I'm a weary traveler. I know how to find beauty in the damp dark forrest. I've seen the gifts in the darkness. But I'm looking for gifts in the light. Show me your light. Show me the fulfillment of my hearts desires. The ones that can be realized on this earth. Bring breath to my lungs. Uphold me. See me. Let me feel your presence. Let me feel free. 

This is a hard time of year for those of us who live with the death of our children. We often fumble for ways to be present in this Holiday Season. We know a seat will be empty at Christmas dinner and that there is a spot under the tree where some other presents would be. At the same time wedesire to feel joy and to engage in the magic of the season with our other children and with our family. The dance between joy and pain, fullness and emptiness..it continues. And is magnified this time of year. 

Today I'm sharing 8 things you can do THIS WEEK to honor your child and to take care of yourself. 

"In mothering my 4 boys, I come alive and live into the purpose of my life. They are my teachers. I’ve learned to open my hands and surrender to what is. Not to what I wanted or hoped for. I can say without a doubt that I am in awe at the wonder of life."

Ethan’s life and death have taught me to really listen to myself, my intuition, God, my soul. To really listen. As these thoughts of fear and failure raced through my mind, one of my greatest realizations of the last three years screamed to me. “IT’S NOT ABOUT ME.” My life is really not about me. My life is about loving others, making a difference, and impacting change. My life is not a container with 4 sides, but rather it’s a fluid river that’s ebbing and flowing and desiring forward motion. My spirit years for connection to you, to others. It yearns for meaning, purpose. It yearns for love.

You are the mom before someone. The dad before someone. The friend, the student, the scientist, the doctor, the teacher, the business person, the author, the someone before someone. Someone will come after you. They will stand on your shoulders. You can make a difference for them. You can stand tall and help make their story better. Even if you cannot make yours better. You get a choice. You always get a choice. I have come to a place in my life where I believe there are no coincidences. Ethan in the hospital for 13 months..no coincidence. Our story...no coincidence. Your story...no coincidence. You hate the outcome of your story? I get it. I do. But you get the choice. Make a change, make a difference. It doesn't have to be in a loud, sweeping way. It can be quiet and small...it's still making a difference. Love the people who tried their best, even if they came up short. Love them into doing something different next time. In the process of all of this...love yourself. You are a beautiful creation. You are created to make a difference. 

Choosing love is not easy. I would not have been able to choose it fully had Ethan not been my son. I loved him so much that it became my only choice, my only option. In choosing Ethan I have been broken and transformed. When I connect with another mom whose child is sick or a mom whose child has died, when I see a friend in a tough spot, I whisper “thank you Ethan”. It’s because of him that I can see these people and love them and feel so deeply with them. 

Spring has turned to summer and I find my body physically aches. I’m often not consciously thinking about being sad or about the fact that another school year has finished without Ethan and that another summer is upon us and we will make memories without him. I’m reminded that grief is physical and at times all encompassing and that it demands my time and my attention. I’m reminded that more time is passing and that healing is a process. That I'm still a student and that I have more work to do. 

For quite sometime I've wanted to continue writing. I had a hard time giving up writing on Caringbridge, but sensed it was time for something new. So here I am writing again, but in a new home. To be totally honest, I'm not sure what this blog will become. But I know I have a lot to say...a lot to share...so here is where that will happen. Over the past three years I have not shared in writing physically as much as I've written in my head. The last three years of learning to live with the death of Ethan have been...well I'm not sure what word I'd pick. They've been hard and they've been fascinating.