Hi Everyone.  It’s only been a few weeks since I introduced you to Lisa, as a Wolf Hirschhorn newly diagnosed person at the age of 59.  I feel like I told you a lot about her, but there is so much more, and I feel like I need to get it out of my head and into print.  I want the world to have the opportunity to know my beautiful sister Lisa, and this is my way of giving her her voice.  So here goes.  And I’ve got lots of pictures too.

Lisa has always loved the holidays, especially when it comes to unwrapping her presents.  It has always been a spectacle to witness, the way she tears every strip of wrapping paper from her presents with the excitement of a small child.  So, I do my best to make this time of year special for her, since our mom and dad aren’t here anymore.  Lisa is still an aged 2-3 child inside, and still needs to feel that love that only can come from a mom and dad, especially around the holidays.  So, when I’m with her, I’m her brother, but I try to give her that sense of warmth and safety that would come from our parents.  She and I don’t live together.  She lives in the home she shared with our mom, because it’s where she’s lived for many years and where she’s comfortable.  So, when we get together, I’m constantly letting her know how happy I am to see her and to be able to spend time with her.  I thank her for coming over to my house, and I let her know how happy that makes me.  I think that’s so important for her sense of self-worth and keeping her striving to forge ahead in her life.  Plus, it’s true. I really love my time I get to spend with her.

I also call her on the phone at least twice a week.  It’s such a treat for me because she gets so excited when I call.  My caregiver Sharon will hand her the phone and then we just get into it.  She asks me how I’m doing.  I ask her how she’s doing.  We talk about our upcoming plans for the weekend, and she lets out the biggest Yeeeeeeaaaaaaaahhhhhhh when she hears what the plans are.  With Lisa, there is excited, and then there is next-level excited.  It’s so good for her to be able to leave her house for an entire day.  She really appreciates the change in location, and I make sure that we are constantly on the go so she feels completely worn out when it’s time to go back home.  She appreciates that.

We’ve been lucky in that Lisa has been ambulatory since age 4.  She’s always enjoyed having the ability to walk around her home.  Unfortunately, she’s lost that now with her blindness, so I do my best to keep her up, busy and walking when she’s with me.  I sense that she is changing and adapting to her blindness.  Where she used to marvel at the bright lights and newness of things out in public, she’s much more in tune to the sounds around her now.  She’s learned to identify her locations by sounds, such as the grocery store or the shopping mall or a restaurant.  She’s also more patient in many ways.  Last week I wore her out walking around the mall on Black Friday.  I plan to make long walks the new normal for us, as part of adapting to her blindness, because she’s always loved to walk around at home.  She was never much for sitting still.

Even though Lisa is still a child inside, she’s a contradiction.  She carries herself as a very mature and thoughtful adult.  Not only does she crave love and support, but she gives it too.  You haven’t lived until you’ve had the “pat” from Lisa.  It’s when she hugs you, and lightly pats your back with her tiny little hand.  Pat, pat, pat.  It’s not very often she throws in the pat.  But when she does, it’s her little extra way of comforting you. It is priceless.

As I mentioned last time, Lisa has little discernable vocabulary, but she still has a language that I’ve learned to speak.  Well, mostly speak.  The long sentences where she looks at you and tries to carry on a conversation are impossibly frustrating.  But situationally, she’s very communicative.  She says thank you for her food.  It’s a two-syllable response and sounds like “Huh Huh.”   Then there is the two syllable “excuse me” when she burps.  Cracks me up every time.  Then there is the very boisterous three syllable “THIS IS GOOD” when she’s taken the first bite of her meal and approves of the taste.  On Sunday afternoons growing up, there was always homemade spaghetti sauce and meatballs on the stove, so Lisa loved to walk by the stove, lean in, smell the pot, and give her very excited, “Ahhhhhhhhhhhh” approval.  She also loved to get the silver mixing bowl out of the cabinet, if dinner wasn’t yet on the stove, and let you know it was time to make the meatballs.

Oh, and whenever a stranger asks her name, she answers with a long one syllable response.  It sounds like “zheeeeeeeee,” which I’m now realizing is Leeeeeee, as in Lisa. How dumb am I? I never put that together until now.

Another favorite of mine is how Lisa reacts to hearing a knock, or a doorbell or any kind of ring.  She quickly replies Yeeeeeeeaaaaaaahhhhhhh???  It starts low and ends on a high note.  When our mom got sick and was in the hospital, we were all sitting around her bedside with the door closed.  It was quiet in the room.  Then a nurse knocked on the door, and suddenly Lisa whipped her head around and said Yeeeeeeeaaaaaaahhhhhhh?  It really lightened the mood in the room.

Then Lisa has her non-verbal language she uses when she can’t get words out.  For example, she will reach for her waistband when she needs to go the bathroom.  Since she’s blind, she can get herself there anymore.   She was very good at getting herself there before.  Another thing about her vocabulary is that she doesn’t have a response for no.  “No” is usually communicated with no response at all.  But…if I bug her too much by asking her if she needs to go to the potty, like before a trip in the car, she has a definitive “no” for that.  She smacks herself on the butt a few times while saying YEP YEP  YEP YEP over and over, in somewhat of an annoyed fashion. That means “no, I don’t have to go, stop asking.”  I usually finish by apologizing and letting her know I got the message.  But hey, it’s better than getting down the road and having to do a cleanup on aisle 3.

And then there is my favorite non-verbal communication of all.  It’s the McCauley Caulkin, Home Alone, both hands to her face with a little whimper cry.  That’s her saying “I’m hungry.”  I’ll say, “Lisa are you hungry?” And she replies with a sad and pathetic “yeeeaaah.”  Then we talk about what she wants to eat, and all is soon better.

Lisa is also known to be quite sneaky and comical when she wants to be.  When we were young, back in the 1970’s, families all huddled around one living room TV.  Lisa loved to pace back and forth and stop right in front of the TV during the big football games.  Her timing for blocking your view at the worst possible moments was epic.  That always prompted groans of Liiiiiissssssaaaa from the family. She’d just giggle and keep walking. Then she would do the same thing again ten minutes later.  She just loved being the agent of chaos. 

Recently I was in a hardware store with Lisa, talking to the clerk about some fertilizer I needed.  Lisa decided she was bored with the hardware store, so she started tugging on her waistband and giving the bathroom signal.  I rushed her out of the small store to find the nearest working bathroom, only to find out she didn’t have to go after all.  Turns out she was just done with the hardware store, so she played me. I never did get my answer about the fertilizer.  Then there was the time at the doctor’s office when, right in the middle of speaking to the doctor, she walked over to me, sat on my lap, put her arms on my shoulders, looked me in the eye and let me know she was done with the doctor’s visit.  She’d never done anything like that before.  I was completely surprised and completely embarrassed.  But then I busted out in laughter.  Both the doctor and I got the message, and that was it, visit over.  And that’s the comical, sneaky side of Lisa.

Well, thank you for staying with me and getting to know Lisa a little better.  I think I’ll give you a break now.  Here are some photos of Lisa and I out on Black Friday, along with a few from her early years.  Have a wonderful holiday season, and best wishes for 2022.

Circa 1965
Lisa Loves to Draw
Black Friday Roadside Hot Dog Picnic at Checkers
Lisa Being Brave for Her Covid Booster Shot
Lisa LOVES Grocery Shopping
Our Annual Christmas Selfie at the Mall
Lisa At the End of a Long Day
 

6 Responses to Lisa Update

  1. Shelley Higgins says:

    Thank you for telling us about Lisa. She is truly blessed to have a brother like you.

  2. Sean says:

    Lovely introduction. Thank you. Esme’s dad

  3. Anitra says:

    Michael! I just love your updates. Lisa’s pat-pat-pat are so sweet and loving and say so much about her. I also adore her sneaky moments and sports disruptions – ha!! Her communication is wonderful and powerful and varied. She is great at expressing what she wants and needs! Please keep the posts coming!!

  4. Tanya Brundage says:

    This is a beautiful story, and she is beautiful Michael. This is my first-time logging in. I too have a daughter born with WHS and is now 31. Keep smiling beautiful!!

  5. Gina says:

    Mike, Lisa isn’t the only lucky sister you have. I adore you and am so proud of the life you and all of us have been able to carry forward with her. Thank you for all that you do. Hugs,
    G

  6. Heather says:

    Thank you for sharing more of her with us! I love hearing about her hugs and her ability to let you know when she is DONE with something! And I’m especially touched to read about such a beautiful sibling relationship <3

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