A Letter to the “Before” Me

Posted Monday November 24, 2014 by Melissa

Dear “Before” Me,

You don’t realize that you’re living in the before. That’s okay. In fact, that’s wonderful.

Life is beautiful right now. Busy, but beautiful. Your children are always moving, laughing, fighting, running, pulling on you, and hugging you.

People say that they’ll probably be football players, like their Daddy. It makes you smile. Don’t lose the hope of what they might become when the future doesn’t seem so sure.

DSC04618I see how you’re just now ready to take a breath – having three boys in three years is tiring, but now they’re all finally past baby-hood and you’re looking forward to watching their personalities blossom. It seems like they learn something new every day.

But I also see that you’re starting to wonder if there’s something more going on with your youngest son. The few little things here and there just keep coming and life is getting a little more challenging. But I know you have no expectation of what is to come.

But I do.

I know about the day when you open your computer and first Google a condition you’ve never heard of. I know that you’ll sit there for hours upon hours, reading, making notes, crying, watching videos, not believing that those moments are really happening.

Not yet realizing that the before is no longer. This is the nether-time. Time suspended. Over the next few days, you will live through the most trying days of your life – days that will forever split your life into two parts.

So before you enter the after, I’d like to offer some advice.

  1. Grieve.

I know that you will question how you could feel this horrible when your child is still alive. You will rock between utter despair and sorrow to shame over such massive grief. Do not be ashamed of your grief. Recognize that you are losing something precious – the life you thought you’d have, the life you thought your child would have. Those are real losses. Grieve and cry and rail and scream and fall limp on the floor if you need to.

Some days you will have to pretend to be normal and you will hide your grief in the car. In the shower. Under the covers. Slowly, ever so slowly, the pretending will be replaced by a new normal, but it’s still okay to grieve new losses as they come.

  1. Compare for now, then don’t.

Right now, you’re probably wondering whether it would have been better or worse if he had been diagnosed with cancer. Better or worse if he had been diagnosed with autism.

That is normal. You don’t have to decide whether those would have been better or worse. But know that as bad as this feels, remember that there are definitely things that are worse. A fatal car accident would have been worse. He is alive. Many other rare diseases where children live merely days or a few years would have been worse. He still has time. You have time.

You have time to cherish him. To love him. To change your priorities so that you focus on the things that really matter in life, including celebrating every smile, laugh, and hug. You have time to look your children, husband, and other family members in the eye every time you see them and tell them that you love them. To never leave important things unsaid.

But as you move forward in this new life, don’t compare him with other children. He is quite unique. Your journey will be different than it would have been. It will be different than the journey of the mom who is bragging about her child’s honor roll, varsity letter, prom, or girlfriend. The fire will burn away many things that are not central to survival, health, and love. That is okay. It leaves more time for the important things.

  1. It’s okay that this feels like too much for you to handle.

That’s because it is. No parent should have to watch their child lose the ability to talk, learn, play, eat, walk or laugh. No parent should have to live for years in the expectation of burying their child. This is entirely too much.

But it’s not too much for your Lord. Release the burden of your sorrow to Him daily. Just like four miscarriages felt like too much, just like watching your oldest have a ten-minute seizure felt like too much, but you survived. But each of these events was merely a primer for your heart, your faith, and your dependence on a God who works all things for your good.

Live in the expectation of heaven instead of the expectation of death.

  1. Find your person.

Many people will soon surround you and do their very best to support you. Don’t be afraid to ask for their help. But don’t get angry when they say the wrong thing or can’t truly understand. This experience is so extraordinary that you have to live it to truly understand. Find that person you can cry, celebrate, and commiserate with. It will help your child and it will help you. You will be dragon moms together.

  1. Don’t give up hope.

I know right now it feels like your life is over. And that the things you read tell you what will happen to your son. Don’t believe them. They do not tell the whole story of him. Have hope that a cure could be found. But even more, even more, have hope that your life will eventually be good again. That you will find purpose. That he will touch the lives of so many people in his path. That he will be so much more than this disease.

It will take a long time for the diagnosis to sink in. You will wake up many mornings and mourn all over again, because you’ll realize it’s not a dream or a nightmare, it’s reality.

You’ll stare at people going about their lives and want to scream at them about the pointlessness of the things they’re doing or talking about. Don’t be angry with them. They are living in the before. Or maybe they too are in the after, but they’ve found their hope again. You will too.

There will be good days and bad.

But when you’re at your lowest, remember that you were given this precious child.

And he was given you.


Dragon Mom (future you)

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14 Responses to “A Letter to the “Before” Me”

  1. Melissa, what wonderful, wise words Although I do not have a child in this situation, I can relate to a before/after situation although I don’t think that I have yet arrived at after….thanks for sharing your process of transformation. It has ministered to me today. I am so thankful that God gave you words to write and share.

    Hugs, Kathleen

    p.s. I did read Still Point of Turning World book. I would love to hear your insights sometime…

    • Miss you Kathleen! Loved seeing you recently, even if it wasn’t long enough. I think there can be many transformative events in our lives, some more pivotal than others, where we can see distinct changes in ourselves. I love having friends like you who reflect on these same kinds of things with me. It makes me more thankful and more hopeful each day. (and I haven’t finished the book yet…. tisk tisk me). 🙂

  2. Beautiful! Wonderfully written. I remember the before me. I’m going to post this to the Rare Disease United Foundation Facebook page. Thank you!

    • Thanks Patricia! It was definitely a process over the last 5 years to reach these reflections. I hope they are helpful or comforting to your readers.

  3. I’m going to be sharing this on our FB page this weekend – just wonderfully done!

  4. Such beautiful words, you have mentioned everything I feel everyday minus the sheer rage of “why us?”
    I know there is hope and a few months down the road things might look more positive. Thank you for making me feel normal for a while

    • Thank you Kayla. Yes, the “why?” is always a hard one as well. Seeing others around us face fatal circumstances like car accidents and rapidly growing cancer really burned my “why me?” away pretty quickly. The more I opened my eyes, the more I saw extremely challenging circumstances facing so many people. The instinct is to compare, like with different diagnoses. But I’ve learned that it’s not so much as which is better or worse, they’re just different kinds of bad. I hope this time of processing gets a little easier for you each day.

  5. Thank you Melissa, I really found myself in everything, really everything, you wrote. You helped me, a lot! So, I also am a dragon mom… Thank you so much.

  6. Beautiful wise words. New beginnings, new worlds can be scary, especially if you did not imagine yourself an explorer. #HypoGal

  7. Tears are flowing as I relate so much to this. I’m also flooded with guilt as I know my sons diagnosis is so much less than so many others as well. I wish I could’ve written a pre diagnosis letter to myself. Thank you for sharing.

  8. I needed to read this today <3 I don't know how/why this link came to my FB timeline, but I so needed it.

    Also. I have never heard of "dragon mom"!! My sons name is Dragon.

  9. Wow I have never come across this before but it is so true. Funny how I found it on a day where, nearly 13 years on, I am having a difficult day. One of THOSE days. Well done you for all your support to all of us out there, who are on different parts of the journey but who have all felt these feelings. Thank you x