wolfhirschhorn.org

Hi everyone.  We are new to this life, in a way.  I say new, because it has not been until a few months ago that we finally put a name to what makes Lisa unique.

My name is Michael.  Lisa is my big sister, and the joy in my heart.  Lisa is 59 years old, soon to be sixty.  She was the first of nine children born to our parents, way back in 1962.  I was born five years later, to the day, and am the fifth of the nine children.  Lisa and I have the same birthday and have always shared a special bond, like twins.

Our dad passed away in 1996, and our mom passed away in 2018.  They cared for Lisa everyday of her life while they were here.  Now I care for her, as her legal guardian.  And I have help from many of my siblings as well as a team of caregivers.

Who is Lisa?  Lisa is the kindest, gentlest, most loving, and most thoughtful human being I have ever known.  I like to say that God created the perfect human being in Lisa.  She only knows how to love.  She never met a stranger, and her favorite thing to do in the entire world is to go to Publix and push the shopping cart.  Why?  Because that’s where the people are.  Lisa is very quick to give a hi to everyone that walks near, and if you are too close you just might become the recipient of a drive-by-hugging.  On a side note, that would usually drive our mom crazy.  But I think that only made Lisa more determined to greet everyone who came near her.

My entire life with my sister Lisa has been a gift, but if I had to pick out a favorite memory from our early years, it would be the time I came home from college for the weekend.  I arrived late on a Friday night, after Lisa had gone to bed.  The next morning Lisa came in my room at 7 a.m. to wake me up.  She was so excited to see me that it didn’t matter to her what time it was.  She just couldn’t wait to wake me up and greet me.  It was early, and not what I had planned, but I never appreciated a wake-up call more than the one I received that day.  And that is how Lisa is.  She just makes you feel important and loved.

Lisa has struggled her entire life, and at times gets sad and cries, but she never stops loving and she never stops making everyone around her feel better.  She doesn’t have much in the way of vocabulary.  She makes mostly sounds that are undecipherable, which is incredibly frustrating.  She often carries on conversations, and you just cannot understand what it is she is telling you.  But we all do our best to let her know we are listening.  Sometimes she will just sigh, and let you know that she’s ok with that.

But on a bright note, she is very good with “Hi, how are you?” Everyone understands that.  And she completely understands everything you say and will always respond with a rousing YEAH in response if you’ve asked the right question.  For example, I’ll ask her what she wants to eat.  I’ll mention all her favorite foods, such as hot dogs, oranges, crackers, marshmallows, spaghetti and meatballs (we’re an Italian family) and a few others.  When I hit on what she wants, she lets me know.  If it’s a pass, she just doesn’t answer me.  And every now and then, when you are least expecting it, she will surprise you by enunciating a random word very clearly that just leaves you stunned.  She also loves to talk to Siri when we’re driving in the car.  Siri will say, “ready to send?”  And before I can answer, Lisa will say “YEAH.”  Then Siri says “OK, message sent.”  That cracks me up every time.

Lisa also often carries on conversations with her angels.  Quite boisterous conversations at that.  She laughs, giggles, and carries on with her angels every day, and often during nights when she can’t sleep.

Speaking of food… Lisa has just four teeth left.  They are baby teeth.  She never grew adult teeth.  She eats only soft foods, cut up into small pieces, and she does remarkably well.  She likes to eat with just her hand but will use utensils if the situation calls for it, such as at a restaurant.  She’s very considerate and always aware of her surroundings. She always puts her bowl in the sink and pushes her chair in at the table after a meal.

Recently Lisa lost her battle with glaucoma and has become completely blind, except for a little bit of light and shadows in one eye.  That’s been very hard on me.  I feel tremendous sadness in my heart.  It has diminished her vibrant personality and her social butterfly nature.  She can’t walk around and socialize with people like she used to.  But she keeps on smiling, and that lets me know that she’s ok.

My focus these days is keeping her healthy and making her happy.  Besides her dental and vision issues, she’s had many surgeries over the years and is a cancer survivor.  But I think now at 59, she’s the healthiest she has been in her entire life. And she’s just a tiny thing, at 5 feet tall and seventy-nine pounds.  Despite all her setbacks and struggles, she approaches every day with a positive attitude and is such a joy to have in my life.  I feel lucky to have her as my big sister, and nothing makes me happier than to see her smiling and laughing.  When she’s at home, she loves to sit in the garage on her porch swing, listening to her music and flipping through her magazines.  It’s her private, happy space, and we lovingly refer to it as her office.

And if you’re wondering why I say that we are new to this world…. Lisa was only diagnosed a few months ago as having Wolf Hirschhorn.  Until then, she was just my sister with a never-diagnosed condition.  Over the last few years of our mother’s life, Lisa’s doctors encouraged her to seek genetic testing for Lisa, but our mother declined.  She knew a diagnosis wouldn’t change anything, and she felt like a diagnosis would come with a premature death date for Lisa.  And that was something she simply couldn’t have handled.  Since our dad died, Lisa was her entire world.  Our mom made it to eighty-seven, and when she passed, she went peacefully, knowing that Lisa would be with me and that I would always take care of her.  It was Lisa’s neurologist who encouraged me to take her for genetic testing.  I’m so glad we did.  It is so nice to finally know that Lisa is not alone, and that she has an entire community of people who would love to meet her.  We hope to travel to an event in the future.  I’m just sad that Lisa was not able to do this when she still had her eyesight.  She would be so thrilled to meet everyone.  If we can be of any help to any families, please reach out to me.