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“Strong As a Mother” – A mom’s poem about Sanfilippo Syndrome

May 9, 2022
Lisa Bittner - Strong As a Mother - Poem about Sanfilippo Syndrome

This Mother’s Day, Lisa Bittner put on a shirt that bore the message, “Strong Like a Mother.” As a mom of a son with Sanfilippo Syndrome, Luke, it inspired her to write the following, which she shared on her family’s Facebook page dedicated to Luke, “Hope Joy Love Life Luke’s Sanfilippo Story“.

“I wrote it in honor of Mother’s Day and MPS Awareness Day coming up next Sunday. Happy Mother’s Day to all the amazing Mamas out there. Especially to those who have no choice but to be strong. I see you, and I send you my love,” said Lisa.

Kindly, Lisa has permitted us to share her post on the Foundation’s website:

 

Strong as a mother who was told her first born had a terminal disease.

Strong as a mother who listened from the next room while her 3 month old baby cried as he was stuck with needles.

Nurses trying so hard to draw enough blood from his tiny little veins, so he could be tested for the same awful disease.

Strong as a mother who was relieved to learn that her baby didn’t have it, but devastated that her 2 year old did.

Strong as a mother who stopped at 2 children. So she wouldn’t have to bury another.

Strong as a mother who enrolled her child into a clinical trial.

A clinical trial that required surgery, implanted devices, multiple sedations, and numerous pokes.

A trial that carried risks, but was done for a chance at hope.

It was his only hope.

Strong as a mother who had to endure the premature ending of that trial.

The end of the hope.

Strong as a mother who now has to watch her child lose his skills.

And eventually his life.

Strong as a mother who has to watch her son cry and suffer.

Not knowing how to help.

A child who can’t tell her what’s wrong.

With doctors often not knowing either.

His disease is too rare.

Strong as a mother who has to fight for answers. To never give up.

Countless phone calls, messages, and appointments.

Surgeries and sedations.

Watching them wheel her child into the OR. Giving them her son. Putting her heart and soul, her everything into their hands.

Strong as a mother who does it all with a brave face, as not to worry her child.

Strong as a mother who waits for her son to awake after sedation.

Releasing the breath she didn’t know she was holding when he opens his eyes.

Finally knowing that it’s going to be okay. That today isn’t that day.

The worst day ever day.

25 times they have taken him back.

25 times she had to be brave.

Number 26 is coming soon.

Strong as a mother who still needs to run a house.

Who needs to find time for her “typical” son, when her other son takes up so much of her.

Strong as a mother who doesn’t mind the diaper changes, cutting up food, thickening liquids, the hitting, the medications, or any of the craziness.

Because to lose those things, means he has lost a skill.

Or has lost his life.

Strong as a mother who’s life is too hard.

But who gets up each day to tackle it.

Strong as a mother who looks for the joy in everyday life.

Strong as a mother who hopes for many more days with both of her boys.

Strong as a mother who is afraid of the future.

Strong as a mother who isn’t all that strong.

Who is strong only because she has no choice.

Who is doing the best she can.

Strong as a mother who loves with all her heart.

Who wishes her love was enough.

That she could make it all better.

Strong as a mother whos son has Sanfilippo.

I am that mother.

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