When we lose one of our own

I know my son lives with a life threatening disorder. Many days this reminder doesn’t live in the forefront of my mind, but it does always live in the back. There are days that are harder than others to push it down, especially days when we lose another of our community.

While processing another loss, our son’s disorder PMM2-CDG, sneaks up on me like a dementor* and whispers in my ear I can take him too. Uncontrollable tears ensue. While this dementor looms over me I can’t help but feel helpless and afraid. I begin to feel terrified of germs and my child catching a cold while shopping at the grocery store. I anxiously think about our next inevitable hospitalization. I start to worry more and more about making the decision to send him to preschool but I know I can’t protect him from everything. More than anything I want him to learn and grow but above all I want him here. Alive and healthy, looking up at me with his ever-so-charming grin.

Along with my fear there’s anger. I am so angry that our life is one of unknowns, worry, and loss. Life is unfair and I understand there’s no way to get around that. I also know that living a life with a medically complex child is not for the faint of heart. I am so angry at our CDG dementor that I want to kick and scream at him but as I do this my fists go right through him. Fighting him is futile. No matter how hard I try and fight nothing changes, he stands strong and tall staring at me. He refuses to leave, reminding me that we aren’t immune to him.

Sadness, fear, and anger overwhelm me but that’s not all I feel.

Admitting my relief is one of the hardest statements to make. I want to take those words back, but I wouldn’t be being honest with myself. My tears fall on my son and relief washes over me. He is here. I can feel his clammy hand on my face and kiss his soft cheeks. I try to stuff the relief down inside me because I know that guilt is soon to follow. I feel immense guilt that I am relieved. I am holding my son, gazing into his eyes while there is another family saying goodbye to their angel. As I rock him our dementor lingers close to me, never straying far. I shed tears for another loss, put myself in the shoes of the parents and sob. My grief is real, but I know that in no way does it even come close to touching how those parents feel.

The losses of our community are incredibly hard. We love each other’s children as our own, and when one loses the fight we all feel it. I used to try not to feel it. It’s just too much. The reality we live is heartbreaking.

Through the tears I start to feel courageous. I can’t let the dementor get the best of me. I can’t let my fear take over. I pick myself up and remind him that we are strong and we will persevere no matter what. I remind him that I won’t let my fear control me and because of him we will make a difference. I remind him that I will take each day as a gift and not take anything for granted. We will make changes because of him. We will become better because of him. I thank him for teaching me to love deeper and live fuller. I stand tall and show him that this is a fight I will fight, and win or lose, our fight, my son’s fight, will be worth it. With this, he starts to retreat. No longer is he taunting me with the ultimate fear of losing my son.

As our dementor takes his place in the back of my mind I am reminded that life is so precious. Life is short and no matter the journey, make it worth it. Give a few more hugs and kisses. Embrace every day and make memories. And never, ever, take anything for granted.

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* From Harry Potter, “A Dementor is a non-being and Dark creature, considered one of the foulest to inhabit the world. Dementors feed upon human happiness, and thus cause depression and despair to anyone near them.”
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A letter…

To moms and dads whose child just received a life threatening diagnosis,

I know you’re scared. I’ll never forget the words from our neurologist when she told us that our child had congenital disorder of glycosylation (PMM2-CDG). She told us that this was not a sprint and we were beginning the longest marathon of our lives. And that’s exactly what I wanted to do. Run. I wanted to scoop up our baby boy and run. I had an overwhelming desire to protect him paired with immense fear. I had no idea where I wanted to run, but I wanted to get as far away from her words as possible.

I wasn’t ready to accept it. I wasn’t ready to give up all of the dreams I had for our son. You’ll grieve the life you planned out for your child, but as time goes on you’ll start making new plans. You’ll start to change your goals and dreams. Your new plans will make you smile and bring you joy. I promise you that just because you feel the life your child will have is worse it doesn’t mean there won’t be times of celebration. I’m still grieving. I don’t think that part will ever go away, it’s woven into us now and that’s okay.

You will celebrate. Every. Little. Thing. I am telling you that every accomplishment your child makes will be enhanced on the celebration scale. I’ll never forget when our son rolled from his side to his back and while I was clapping and cheering my aunt looked confused and asked “that’s what we’re excited about?” She didn’t get it. A lot of people won’t get it. Accomplishments and triumphs will make you want to stop everyone at Target to tell them your 3 year old has just started sitting for minutes at a time.

Learn to forgive family, friends, and strangers for ignorant comments and even well meaning words that come out wrong. I’ve been asked if my son will outgrow his condition, his life expectancy from strangers, and been told that him being in a wheelchair and living with us forever is “no big deal.” Unless someone lives in your house and wears your shoes they have no idea the life you lead, so cut them some slack and instead of getting upset, try and teach them. Practice grace and try to explain to them your feelings instead of holding it against them. As much as they may try to understand they simply can’t.

You will become things you never thought you would. Teacher, nurse, therapist, fundraiser, and advocate. Fight for your child. You are the expert on your child and don’t be afraid to voice your opinion.  Your child is counting on you, and I know you will become the greatest advocate even though it’s a job you never wanted to have. It’s unfortunate that fighting for services, equipment, and therapies will be a constant struggle. Don’t stop fighting.

There will be days you want to give up. There will be moments that you retreat to the solace of your room and cry. You’ll cry at the unfairness. You’ll shed tears as you watch your child struggle day after day to do something so many take for granted. You’ll wonder if all of the hours of therapy are worth it. You’ll question your decisions and wonder if you’re doing the right thing. I’m here to tell you that you are absolutely not alone. Any feeling or thought you have has been felt by another parent, I guarantee it. I’ll never forget a time I was sitting in the therapy observation room watching my son wail and protest during physical therapy and I sat there with tears streaming down my face. I wanted to give up. I wanted to just be done. Over two hundred appointments, countless practice hours at home and he still wasn’t sitting. I felt so utterly defeated. I thought to myself, this is something that is never going to end. He will always need therapy, always work for everything. The thoughts of forever were too much, but my feelings of defeat quickly faded as I watched him continue to work through the tears. He isn’t giving up and neither will I.

Find your tribe. Find those who cry with you, lift you up, laugh, and simply listen. Find a support group, whether it’s an online community of parents whose children all share the same diagnosis or a group of old friends. You will need them and they will need you too. You’ll find out some of your friends want to understand your life and some who don’t. It’s okay. Your new life is not for everyone and along the way you’ll change too. I have to say that some of my best friends are women who live “this” life. They are strong, courageous, bad-ass 😉 moms who live across the globe but are always here for me whenever I need them. They truly understand the battles and they wholeheartedly celebrate the triumphs along with me.

For me, I became a better version of me. I love deeper. My days are filled with gratitude for the little things. My bonds with my tribe are stronger. I no longer focus on the things I used to, frivolous or not, the things I find important in life have changed. Moments. Smiles. Giggles. Change. I’ve learned to embrace it all. Even the moments of tears. There will be plenty of those, but I feel those moments have made me stronger. They make me want to fight harder, learn more, teach more, and love far more fiercely.

It won’t be easy.

It won’t be fair.

But it WILL be worth it.

Find the joy in the journey. It’s there. I promise.

Love,

A member of your tribe

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