To Myself Before I Found Hope After My Son’s Hunter Syndrome Diagnosis


On a sunny day in April 2009, I knelt on the steps to my basement and wept uncontrollably. Not the delicate tears of sorrow, but the full-body, ugly sobs that come from a grief deeper and blacker than the ocean.

It was the first day I had heard the words “Hunter syndrome” and knew they applied to my then 2-year-old son. It meant he would lose all he knew, all he could do and then he would die. From that instant, there was no going back, no erasing the knowledge that was collapsing our world and stealing even the breath within me.

It is now six years later, and there are conversations I wish I could have had with myself, comforts I could have offered, insights I could have given. This is my plain and simple effort to go back in time.

Dear Before Me,

You don’t realize you’re living in the “before.” That’s OK. 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 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.

I 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 babyhood, and you’re looking forward to watching their personalities blossom. It seems like they learn something new every day.

But I also see 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.

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 you’ll sit there for hours upon hours, reading, making notes, crying, watching videos, not believing 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 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 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 OK to grieve new losses as they come.

2. 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 something else.

That is normal. You don’t have to decide whether those would have been better or worse. But know as bad as this feels, remember there are definitely things that are worse. He is alive. He still has time. You have time.

You have time to cherish him. To love him. To change your priorities so 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 eyes every time you see them and tell them 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 may 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 not central to survival, health and love. That is OK. It leaves more time for the important things.

3. It’s OK 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.

Just like four miscarriages felt like too much, just like watching your oldest have a 10-minute seizure felt like too much — but you survived. Each of these events was merely a primer for your heart, your faith and your dependence on a God who you believe works all things for your good.

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

4. 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.

5. Don’t give up hope.

I know right now it feels like your life is over. And 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 you were given this precious child.

And he was given you.

Love,

Dragon Mom (future you)

three young boys sitting together
Melissa’s three boys.

A version of this post originally appeared on Saving Case & Friends.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

JOIN THE CONVERSATION

Related to Hunter Syndrome

It Took Almost 6 Years to Get My Child’s Rare Disease Diagnosis

Many people have no idea that February 29 is Rare Disease Day. The last day of February is and has been Rare Disease Day (in Ireland) since 2008. That is the same year my son, Ethan, was diagnosed with a rare disease called Hunter syndrome. It is estimated that there are about 7,000 identified rare diseases [...]

7 Questions to Ask Yourself If You Think Rare Disease Day Doesn’t Apply to You

Approximately one in 10 Americans has a rare disease. That statistic sounds big and meaningful, even considering that there are approximately 7,000 rare diseases collectively. But on the flip side, that means nine out of 10 Americans do not have a rare disease. Why should they give a flying flip about rare diseases or Rare Disease [...]

A Mom in the Waiting Room Told Me One Thing Genetic Testing Is Not

It was mere weeks after Ethan’s diagnosis of Hunter syndrome when I was asked to come in to speak with a genetic counselor and to have my blood taken. My blood test would determine whether or not I had given Ethan a rare genetic syndrome. I hadn’t thought much about how that would make me feel. I [...]

Why I No Longer Pray for a Cure for My Son’s Terminal Condition

I am a parent of a child with a terminal condition called Hunter syndrome. I no longer pray for a cure. Terminal or life-limiting conditions give you a perspective, one that’s different to most and one you can’t really explain. When do you stop looking for a cure or a breakthrough in medical research? I spent [...]