I’ve asked some of my brave and precious friends to give language to the grief and fear that has been part of their lives as a result of Mattie’s death. I’ve asked them to join me in “living out loud”, as an extension of my sharing my own grief journey. Because their grief matters too. Mattie’s death was just too close to home and has shaken them in some big ways.
My words to them and many others that they represent were previously shared in a previous post “Yes, I’m Talking to You- A Letter to My Friends with Medically Fragile Children”
Stacy and Simeon
I’ve known Stacy for many years as our lives intersected through adoption. I remember clearly the first time we talked on the phone. It was about a little boy. A boy who needed a family, a boy who would need extra special care due to his medical condition. I don’t remember what I said that day. I’m sure I answered questions, and I’m very certain that I told Stacy that she could do it and that I would be there to support her.
“Mattie is a huge part of why we said ‘yes’ to our son. It was watching his little life unfold that gave us confirmation that God was calling us to adopt our son. When our journey with our son became similar to Mattie’s, we knew we could do it because God would give us strength.
But then, Mattie died. I will never, ever forget the message I got from Tracie ”Stacy. My boy is gone. We lost him.” I was immediately overwhelmed with grief. I felt like the air was being sucked out of me. That night, I sat by our son’s crib stroking his little hand, grieving for my precious friend. Then fear, fear for my son’s life engulfed me as I watched my son breathe, as I watched his monitors, begging God to protect his life. It was a crazy mix of emotions, deep sadness and disbelief that Mattie was gone, fear for my son’s life, guilt for fearing. Mattie had always pulled through! I didn’t realize how much of my peace came from seeing his precious body be victorious with every single illness! His death rocked my very foundation of peace for our own son’s life. I have the assurance that our son’s protection comes from God alone, but this mama’s heart still struggles with fear because, if it could happen to Mattie, it could happen to our son.
Angela and Ada
I’ve known Angela for many years. I remember one day calling her and telling her about a little boy who needed a family. She didn’t think twice. She just said, YES! And Jonah brought us together in a deeper way. She prayed for my sweet boy for years, and during the last year of Mattie’s life, she brought a sweet girl into her home and has loved and defended her like a true Momma bear, even when it was terrifying.
When I almost lost Ada her first Christmas something in me was lost- an innocence or something. I’ve not been able to put into words, but I know you understand! Honestly it’s a very lonely place. First, I should be thankful she lived, and I am; however people don’t expect you to get “stuck” because she lived. Secondly, two of my friends experienced child loss within weeks of each other. You were one of them, someone I adore and cherish even though I don’t think I’m very good at making you feel it- for that I’m so sorry!
My deepest fear is losing a child, as I’m sure it is for every mom. With everything in me, I wanted to pretend Mattie didn’t leave this earth. With everything in me, I didn’t want my dear friend to walk through the absolute unimaginable- experiencing the loss of a child, but even worse to watch it happen!
Fear is a funny thing. It controls and manipulates you- causes you to act in ways that you NEVER dreamed you would. When you sent that message on Facebook that Mattie was gone, the very same fear of when I almost lost Ada came rushing back in full force. The kind of fear where you imagine yourself without your child. The kind of fear where you wonder how in the world you would pack her things. The kind of fear where you imagine her in a casket. The fear where you imagine saying to God, “You’re in control. I trust you! I still believe you are good!” But could you really say it and mean it? The fear of becoming “that mom” who lost a child and have to endure all of the stupid things you hear people say to one who is grieving. The fear of watching everyone withdraw because they don’t know what to say or are so afraid to even have a conversation.
Fear- I hate it! I fight it every day because I know it’s a very real possibility for Ada. I fight it because I don’t want to live in fear, but live in the deepest realms of love. Fear and love can not coincide in the same place. I have never grieved for anyone like I have grieved for you. I have never been as angry as I have been this last year for you. I have never felt so paralyzed by fear as I have been the last two years! I couldn’t breathe.
You have taught me and so many people what love looks like! What hope and grace look like! Thank you! Thank you for being selfless in the midst of my self-centeredness. When all I could see and feel was fear, you had lost your precious child and you extended grace to me. When fear had paralyzed me, you reached out and walked me through that fear during your grief! THANK YOU! Yes, I’m bawling my eyes out! I want to be one who loves like you to the depths that you love and live! I am so thankful you!
Thank you for living out loud- for bringing healing to those who are stuck in silence and loneliness! I love you! I’m so sorry I’ve let fear keep me from being the kind of friend you needed! You are such a blessing and treasure!
Bethany and Penny
I met Bethany several years ago, when she discovered my blog just as she was about to be discharged from the hospital with her sweet Penny, who would be going home with a tracheostomy and on a ventilator just like Mattie. She told me later that the first post she read was the story of our first family outing with Mattie to our favorite park. She said the minute she saw it, all of her misconceptions about what life would be like for Penny changed. She saw that Penny could be part of the family, thrive and enjoy life to the fullest! Our friendship has grown over the years, and Mattie and Penny even had “Skype” playdates from time to time.
When Mattie passed, I was a parent mentor at the hospital, helping other families to deal with what we had walked through- raising a child with a tracheostomy. Sharing your book “Mattie Breathes” was a regular part of the process. It allowed me to show parents that their child’s diagnosis was not a sentence of solitary confinement. They needed to face the uncertainties and inconveniences alongside their child to give the child the best experiences they could have. I had a message of hope and healing and thriving and love. Then Mattie passed and within weeks, two of my mentored babies also passed suddenly and of something that could have happened to my baby too. I was paralyzed.
I had told them it would be ok. I had told them they could handle it. I was wrong.
I still don’t know quite how to handle Mattie’s loss, but because of your openness with the process I’ve been able to learn that it is going to be ok, even if it’s not. I’ve learned that savoring every moment with my miracle is honoring yours. But it hurts so bad I like to pretend it never happened. I like to pretend that Penny doesn’t have asthma, that she’s perfectly safe and nothing bad can happen to her.
Then at our last hospitalization during a middle of the night episode of cardiological issues, I heard the doctor say to the nurse, “Make sure that cart (crash cart) is close by and make sure there’s lidocaine in it.” My heart stopped. Is this happening? Am I going to lose her? And to this very moment I can’t think about it without being overcome with the fear that in the blink of an eye I could be walking my own grief journey for my child. It scares me to death, and until Mattie, and Joy, and Sutton, I didn’t have to face it.
Whitney and Louie
From Whitney (with no introduction from me because she tells the story of our connection so well):
I remember making the decision to have Louie’s trach placed less than a month after his first birthday in the summer of 2013. Our nurse, who knew us very well, saw the fear and despair in my eyes as I tried to smile my way through the pain I was experiencing. She called on a certain parent who was well respected and known by everyone in the hospital. This mom walks into my room one day and loved on me, filled my heart with hope, and handed me a book. Although, I had hope I was still very angry and very scared.
After she left I looked down at my book, and I saw this sweet face smiling back at me. I refused to allow this little boy to penetrate my heart and make me smile so I shoved the book underneath a stack of magazines in the hospital window so I wouldn’t have to look at it.
Three weeks after his tracheostomy, I’m just as worn down and tired as I had been before. Nothing was changing. I was still trudging through each day praying to a God that I was so angry at and hoping that he would change my circumstances. Every time I did he seemed to drift further and further away but yet stayed so close.
One day when I couldn’t take myself anymore I reached for that book that had been hidden away for almost a month and reconnected with the little boy who was still smiling at me from the front cover. This time I was ready to let him teach me more about life with a tracheostomy and ventilator. I was finally ready.
I flipped through each page and found myself laughing and smiling. Something about this sweet family featured in the pages of this book resonated with me. Mattie and my boy Louie have very similar features and many of Mattie’s facial expressions reminded me of Louie. I grew so fond of him and started to follow you, Tracie, on Facebook so that I could learn more about the mother who was behind the scenes.
You became my role model without ever having spoke one word to me. I admired you and looked up to. Time went by and I continued to admire you and your family from afar. Things seemed to be going so well until one morning in August.
I remember it as if it were my own child.
I woke up and did my normal routine. I finally got around to checking my emails and Facebook notifications. I can’t remember what order this came in because everything felt so surreal, and I have a hard time remembering all the facts. Anyway, my friend sent me a text and said, “Have you heard or seen anything about the Loux family?” By this time I remember quickly going to your profile to see what was going on. I only read one or two posts that were related to the incident, and I immediately ran into the other room and grabbed my boy so tight and just wept.
I went back to my phone to ask my friend, “How? Why? When? Where?” Only to hear “I don’t know, I don’t know, just pray!”
After that day, I shut myself off from you and your family for a little while. I couldn’t take it. I didn’t want to hear it or feel it or know what was going on. I didn’t want to see just how much pain you were feeling. I didn’t want to hear about his ceremony. I just wanted him to still be here so I could see your updates and his big smile come across my newsfeed!! I didn’t want all the other stuff.
I was to afraid to face it simply because I knew that my little boy could be next. Those thoughts are paralyzing in so many ways.
After a week of no contact with your world, I began to feel a tugging at my heart. I tried, but I just couldn’t shake it. The Lord got a hold of me. I felt him pushing me to come alongside you as you walked through this journey called “grief.” I didn’t want to because of how raw and painful I knew it would be, but I had to. After all, even though we had never had a conversation I felt a connection with you and your boy like I have never felt with any other trach family.
If I could walk with you and pray for you through the good times then I can walk with you and pray for you during the bad times.
Over 2 yrs ago I was given a book. Little did I know that the sweet boy on the cover of that book would be your son or that he would make me a better mom. Little did I know that he and his mommy would show me how to love unconditionally, how to never take one single second for granted, how to cherish even the bad moments of trach life because those moments together are better than having no moments at all.
I hope Mattie knows that his mommy is my super hero. The kind of super hero that goes before you, feels the pain and hurt that you could very well feel some day, and teaches you how to embrace life’s trials, lean into your circumstances, keep going, take care of yourself, and just breathe.
On the days that I feel like I just can’t go on anymore I remember you Tracie. I remember Mattie. I take a deep breath. And I keep going. Thank you.
Alicia and Robbie
I was Alicia and her husband Nathan’s adoption consultant. Their journey with me resulted in Robbie finding a family with them. The story is beautiful and courageous. I’m so grateful to have had our lives intersect. Like many of my clients, we remained connected. This past year I was blessed to celebrate with them as they miraculously welcomed twins into their family after years of infertility struggles.
It’s so hard to find just a few words to express how just watching your family from the outside has impacted us. Not even mentioning of course, how you directly impacted our family by being the person to point us to Robbie. Of the many things I’ve learned watching you grieve, is that you are just as human as I am. I know this sounds so weird, and I don’t want you to take it in a demeaning way at all. I have a tendency to elevate those that have “been there done that” over me. Always viewing those that are in a tougher situation than I am as being on a different level than I am. Watching you grieve and put your raw emotions out there in such a public arena, I realized that these people that I have put before me and above me, are no different than I am. Not to lessen the value of others, but choosing to see myself as strong and valuable too. As a mom to children with needs that many never have to deal with, but not so severe that I’m frightened for their lives with every runny nose, I struggle with finding my place. In that struggle, I automatically see myself as “less than” others. By listening as you pour your heart out so eloquently, I have realized that we are more alike than different. Through this realization, I have allowed myself to be worthy-to be worthy of having bad days and to grieve what may never be with Robbie, to be worthy of over-sharing the accomplishments of all my children. Thank you for being who you are, and we love you so so much.
Amy, Chip and Ollie
There is probably not another little boy who’s life was so parallel to Mattie’s during our journey. Ollie was a sweet little neighbor in the PICU for a little while. We have stayed in touch for years, have celebrated some cool milestones and watched our boys overcome so much together.
Our son, Ollie, is a part of a large community of families with children that are medically fragile. Over the last five years, I’ve seen several families lose their children from this community. I have a feeling that the outside world, for the most part, looks at our lives and assumes that these losses are an inevitability and families should be prepared as such. But, for the families I’ve known, no matter how bad the odds or how things look, you believe wholeheartedly that your child will be the one to make it. I have always believed that about my son. He has overcome SO MUCH and he has lived SO STRONG. It wasn’t until I learned of Mattie’s passing that my resolve was really tested.
Mattie holds a special place for us, because he and Ollie shared many similarities in their physical health. They both had similar heart defects, multiple open heart surgeries, chronic lung disease, g-tubes, tracheostomy, came home on a ventilator, the list goes on. Whenever Mattie overcame a medical crisis, I knew that Ollie would be okay too. Mattie’s passing was a complete shock. I believed, just as I do for my son, that Mattie would continue to beat the odds. Now that he’s gone, I don’t have a reference. When Ollie is slammed with a respiratory issue, I don’t have that comfort of knowing there’s someone dealing with almost the same thing, and he’s doing just fine.
My heart hurts because I see ourselves a little in the Loux’s. I see a family that was totally invested in their son regardless of the odds, and the price of loss after loving greatly. At times it’s impossible to escape the creeping thoughts of the what if scenarios. The only thing we can do is to live our lives how the Loux’s lived theirs with Mattie; believing in and living the impossible.
Lorena and Lola
My dear friend Tracie, who I have never met in person, but I feel we are soul sisters and will meet in person one day soon, asked me how their experience with loss and grief over the luminous Mattie affected us. I read the other day that sometimes the most loving thing we can do for someone in need is be there without fixing a thing. I believe the same can be said for loss or grief.
We are both connected by our medically fragile children and our little girl Lola had a lot in common with your Mattie. I wish they could have met, I know they would have had so much fun together. One day they will.
I can tell you that knowing you and your family, sharing Mattie’s experiences, even if from a distance, has been a source of constant joy and inspiration for our family.
And yes, every time I read your updates saying that there was an emergency or he was sick, my heart would tremble and I would immediately think about our little girl and remember the scary times we have lived through with her.
But no matter how scary, the underlying feeling, the undeniably overpowering feeling that came through after all else, was and always is, love. And where there is love there is hope. And there is joy. And there is grace.
Mattie brought us light. Inspiration. Hope. Mattie and your family always remind us that even through loss and grief, even thought it all, if you allow yourself to feel it all deeply, it will irrevocably lead us back to love. To the light. And for that, we are forever grateful.
I believe that only by dancing with the shadows can we find our way to the light. And Mattie is the music through the shadows, showing us our way back to the light.
With deep love
Your soul sister, Lorena