Mother’s

Mother’s Day Rings Different After D-Day

It was a few days before Mother’s Day this year that Dave had to remind me that it was coming up the next Sunday. And immediately I got that same feeling of dread and guilt that I felt on my first Mother’s Day after receiving Livvy’s diagnosis (coined D-Day). I was sick to my stomach.

My first Mother’s Day after Livvy’s diagnosis. She could still talk, still sometimes sit up on her own and we had no idea about Keira’s diagnosis yet. My mom surprised me with Eva’s shirt that says “Strong Like Mom” and it made me tear up (and still does). From the picture you’d have no idea what we were going through. But internally I was broken.

While I know it’s not my or Dave’s “fault’ that this has happened to our children, you can’t help but feel like a bad parent when your child is terminally ill and there’s literally nothing you can do to fix it and make them better.

That first Mother’s Day and Father’s Day after we received Livvy’s (and then Keira’s) diagnosis were gut wrenching. Dave and I didn’t want to celebrate; we were heartbroken. I felt nauseous for months after receiving the news. It was one of the worst times of our lives knowing not one but two of our children has this terminal illness for which there was no cure. Why would we then turn around and celebrate us as parents?

Mother’s Day, and Father’s Day, suddenly went from being days to celebrate us as parents to days we dread.

While it seems each year it has gotten a tiny bit easier for me to process, it’s still a day I do not want to celebrate. I’d love to erase it from the calendar altogether if I could. But I know each year Eva, and soon Keira, will come home with gifts for us that they made at school. And we’ll be forced to put on those smiles and “celebrate,” at least taking comfort in the fact that it’s something the girls enjoy celebrating. For us though…I think it will always be hard.

What we do take comfort in though is the fact that we have done literally everything in our power to get them anything and everything we possibly could – whether it’s the only clinical trial in the world for symptomatic MLD patients, a life-saving gene therapy treatment in Italy for non-symptomatic MLD patients or just all the hugs, loves and happy life experiences we could think of. We would do anything for our girls.

And in the end, I know we deserve to be celebrated. But on days like those we just have to try extra hard to enjoy it.

For Those Extra Special Moms

To the mom who didn’t get “just a healthy one”:

A healthy baby .
That’s what you want.

Boy or girl? Doesn’t matter.
Just a healthy one.

With ten perfect fingers and ten perfect toes.
A tiny smile and button noes.

A brain that works as mine and yours.
Tests coming back with perfect scores.

A heart that beats strong—the rhythm of drums.
And the in and out breath of healthy lungs.

But then you find out it won’t be so.
An unhealthy child— so much unknown.

A journey full of winding roads.
Ups and downs. Such highs and lows.

A little one fighting for their life—
And you, strong beside them in perfect stride.

Just pushing them forward with all that you are— a mother who hasn’t backed down thus far.

This motherhood it will indeed be hard.
The heartbreak will leave inevitable scars.

Not a motherhood you had ever planned for—
But it won’t be less. It will be more.

More love needed and more to give.
An understanding compassion that is so so big.

More strength than you had ever known.
A faith in God and Him alone.

You’ll learn to hope beyond all reason.
And lay down burdens in every season.

You’ll fight and give up and fight some more.
You won’t be stopped by seemingly closed doors.

You’ll give more than you knew you could.
And though you’ll grow weary you’ll still see the good.

Yes this child— unhealthy as they may be.
This child has allowed you so much to see.

Joy and beauty.
Pain and sorrow.
A gratitude for every single tomorrow.

This child is adored— a gift from above.
A newfound passion full of motherhood love.

So this is to the mother of an unhealthy child.
Who holds up her head, moves forward and smiles.

Your motherhood was not the way that you planned.
But today you love more— and stronger you stand.

I’m not sure who wrote this but it was shared with me by another MLD Mom. And it is so true. To all my other extra special Moms, a very Happy Mother’s Day to you! ❤