Helping Individuals With Special Needs Navigate Grief

My mom died in the middle of the night.  The next morning, Travis took the girls to school so I could have some time alone with Leanne to deliver the news.  I took her on a walk because I didn't want a negative memory to be associated with a particular spot in my home.  We started out by talking and Mom came up in the conversation quite naturally.  When I told Leanne that she had died the night before, Leanne buried her face in my shoulder and cried, really hard, for about 30 seconds.  Then she looked up at me and said "Elizabeth, can I ask you a question?"  I said, "Of course.  You can ask me anything."  She said, "Can we have chili for dinner?"  

What in the ?!?!  I let out some sort of a shocked snort and I stumbled, "Uh, yeah.  Sure.  I guess so."  She replied, "That would make me feel better."  We kept on walking and we stopped at the park and decided to swing.  I let Leanne swing freely until she opted to stop.  Then we went home.

Travis returned from dropping the girls off, and found me and said "I just went to give Leanne a hug and she asked me if we could have chili for dinner" and he kind of laughed.  I said, "I know.  I don't get it."

Later, when we were cleaning out Mama Hop's unit at the retirement community, we found one food item in the cabinet: a single can of chili.

Leanne's journey through grief has been oddly serene.  She rarely cries.  She talks about Mom and says "She's in a better place - she's in heaven.  I pray for her."  Prayer is one resource Leanne turns to many times throughout the day.  She is very devout; incredibly strong in her faith.

One of the first things I did upon Mama Hop's passing is to order Leanne a framed picture of her and my mom; something tangible that she could have with a smiling reminder of her happy days with mom.  She immediately requested that Travis hang it in her room, right next to her TV.

 Every day, Leanne checks the mail.  She looks forward to opening sympathy cards. 

I gave her a binder with page protectors and she saves each and every card in the binder.

 Leanne joined Merryn and I in sending thank you notes for the flowers and memorial donations.

Participating in these activities does not upset Leanne at all.  In fact, she seems to enjoy offering words of comfort to others.

People with Down syndrome tend to be very concrete thinkers.  Everything is literal; abstract concepts are hard.  Leanne doesn't dwell on the past.  She doesn't worry about the future.  She lives in the moment.  

I don't force her to have conversations about Mom but I don't dodge the subject either.  She tells me that she loves mom and misses her, but that mom is watching us from heaven.  She talks about other people with have lost (Dad, Grandma, Grandpa, pets) and she points to the sky and says that they're up there.  She knows that while we can't be with them right now, that they are still with us.  She says "Mom is in my heart."

The following are some resources that have helped us:

The Invisible String by Patrice Karst - This is a sweet children's book that delivers the message that even when we are separated from loved ones, we are still connected by love. 

The Memory Box by Joanna Rowland - This is a book that addresses death through the eyes of a child with sensitivity and it offers ideas of how we can preserve the memory of our loved ones by keeping mementos and photos in a special place.

The following document was given to me by the incredibly kind and compassionate social worker at the hospice house where my mother passed.  It is a wealth of guidance.  It can also be found on the "Resources" tab of the blog.

The Little Glass Plate

"In the midst of darkness, light persists." 

- Mahatma Gandhi

When we realized how dire Mama Hop's condition was; when the doctor told us it was time to look into hospice care, panic set in.  Every thought that raced through my mind led back to Leanne.  Should she see mom like this or should her last memory be a more healthy version of mom?  Should I prepare her that death is imminent or is it unfair to cause premature stress and grieving?

I grabbed my mom's "Mental Wellness in Adults with Down Syndrome" and I scanned the index for a chapter that may address this.  I began googling things like "Down syndrome and grieving" and "Loss of a parent Down syndrome" hoping that I'd find a step by step guide that told me exactly what to do.  I stumbled upon a listing for a seminar on the topic that occurred back in May.  There was an email address to register for the webinar and I decided to go for a shot in the dark and sent a desperate email.

Within hours, I received a response telling me that the woman who conducted this seminar is on maternity leave but that my email had been passed along to her and she was happy to help.  She wanted my phone number.

Are you kidding me?!  A total stranger from the East Coast who just gave birth and has no obligation to answer an email, yet alone help a stranger was willing to take my hand and guide me through this process?!  

"For we walk by faith, not by sight ."(2 Corinthians 5:7).

That day, I received a call from Melissa Levin who gave me the following "homework": Find an activity that your mom and sister enjoyed doing together and have them do it.

I scanned my brain and mosaic glass work immediately came to mind.  Several years ago, after my mom retired from teaching, she attended mosaic art school in Ravenna, Italy.  She came back home and mosaiced (is this a legitimate verb?  Probably not.  Just go with it.) everything in sight: from bowling balls to my kitchen table.  It was an obsession! In Leanne's current day program, she cuts glass and creates beautiful works of art.  I immediately called her supervisor and told her that while I realized she was incredibly busy with the year's biggest fundraiser happening the next day, is there any way we could create a glass project for my mom and sister to complete together?  She stopped what she was doing and set aside a package to take to my mom.

That night, when Travis returned from his business trip, Leanne and I left the girls in his care and went to see Mom.  We picked up her favorites: crab dip and Pinot Grigio and we gathered around a small bedside table.

 Together, Mom and Leanne delicately glued glass beads to a small plate.  The beads were comprised of various shades of their mutual favorite color: green.  

 That night was a gift.  When we returned the next morning, Mom was no longer able to lift her head up off of her pillow.  She had rallied to give that last burst of energy to Leanne.  It was a beautiful evening; a memory that is forever preserved in this tiny glass plate.  Which leads me to another piece of advice offered by Ms. Levin: Ensure that Leanne has a tangible object that calls to mind a positive memory of our mom; something she can hold when she wants to reminisce and feel closer to her mom.

I am reduced to tears when I consider how many people went above and beyond to make that night possible for us.  This past summer was a heartbreaking journey; witnessing someone you love endure hardship, suffering, and pain is torture.  But as heavy as the weight was, and as dark as the journey got, moments of light illuminated our path.  Those moments help steer us back to the important focus: the beauty that exists and the blessings that remain.

Leanne says that Mom visits her every night in her dreams.  She tells Leanne that she loves her and she encourages her to keep praying.  Leanne says "Mom is in a better place" and she maintains faith in the fact that they will be reunited someday.  For now, Leanne does not dwell on the past, nor does she worry about the future.  She exists in the moment and she exudes faith and love.  

She is a light.

The Best Gift To Give Someone Who Is Grieving

My high school theology class had a unit on death and bereavement and these two things stuck with me: 

1.  Reach out to the grieving individual upon hearing of the death, but it's even more important to reach out to the individual 2+ weeks later.  This is because all of the activity surrounding the death has subsided and the quiet sets in...loneliness appears.  Life goes on for everyone else but the grief remains for the individual who lost a loved one.  This is when they need the most support.  

2.  The most wonderful gift you can give someone who is grieving is to share a story about their loved one.  Reminisce about the time you spent with the departed individual.  What was your favorite memory of that person?  How did he/she touch your life?  What did you learn from him/her?

Now that I've lost my mother, I can testify that these things are true.  The initial period after the death is a whirlwind.  You cannot fully process during this time.  You are a shell of a human in a state of shock.  Then life goes on...for everyone else.

Loneliness hurts.  You can be surrounded by people, but no one "gets it;" that pain that you're biting your lip to bear.  There's a fear of forgetting; forgetting the way her voice sounded, forgetting the way her hand felt in mine, forgetting all of those little quirks that made her who she was.

What helps?  When people who knew the departed person share stories about the person, you feel less alone.  Someone else knew my mother and also feels the void of her absence.  And that story that you share with me about a time my mom did something hilarious or kind...the story of how you first met...the story of what you learned from her...that keeps my mom present.

I've clung to my mom's childhood best friend during the past few weeks.  She helped take care of my mom while my mom was sick and we became very connected during that time.  She drove for hours to be with my mom upon hearing of her stroke.  She pulled Lydia aside and kept her entertained while I wept my way through a hospice meeting.  And she sat with me and shared stories of the ornery antics that she and my mom orchestrated during their teenage years.  She knew my mom long before I did.  And I hang on to every word that she says about my mom because I want to preserve every part of her that remains here on earth.  You have no idea how much I cherish a silly story about knocking the nun's statue off the shelf and carefully balancing the broken pieces atop one another, praying that you wouldn't get caught.  Then watching it wobble precariously every time someone got too close...or knowing it was my mom who drew the mustache on the poster of the annoying roommate in college, even though she would never admit it.

During my mom's funeral, another dear friend delivered the most incredible eulogy where he shared his stories of his friendship with my mom over the years.  They were teachers together and he started with the first day that my mom walked into the teachers' lounge and said something like, "Well, I have a student who is on all fours, barking like a dog, refusing to get up.  If this is an indication of how this school year is going to go, I'm in trouble."  I've asked him to send me the rest of the eulogy because it was authentic, hilarious, beautiful, and perfect and I want to have it forever.

Never have I been more grateful for this blog.  Mama Hop lives on here at Confessions of the Chromosomally Enhanced.  And it's apparent that the opportunity to get to "know" her through these words, pictures, and videos impacted many individuals that we've never even met.  I know this because messages from these individuals have come pouring in and just like the stories from my mom's friends, these stories provide comfort and happiness.  They help stave off the loneliness.  They provide reassurance that Mama Hop will not be forgotten.

The outpouring of support, the acts of kindness, the messages of love where you share your own story of loss: these things provide strength and offer a promise of healing.  Please accept our sincere gratitude.

One more thing...

 IMPORTANT DISCLAIMER: CCE has not and will not become a grief blog.  Here in our world, humor sustains us.  It always has.  Just ask Mama Hop.  So I won't close this post without sharing a funny little story...

In 2012, my mom planned her own funeral.  She purchased a burial plot, picked the casket, etc...It seems like a morbid thing to do but it actually helps immensely!  Anyway, the funeral director was a lovely woman who was very kind and patient in walking me through everything.  She sent me email after email with bullets of things that I needed to decide/do.  Then, she would call and gently follow up, knowing I was trying to care for 3 children and my sister, while packing and planning for a long trip for the funeral. 

So we scheduled the family visitation for 8am and the public visitation for 9am following by the funeral and burial.  Then I got another one of these emails with another bulleted list.  One particular bullet made me laugh so hard...

Hey Guys!  Wine tasting at the funeral home - 8am sharp!  Come thirsty!  

Oh Mama Hop and her Pinot Grigio!  You've gotta love her!  Family did, indeed, have a wine toast in honor of Mama Hop, but we waited until later in the day.  And I'll never be able to see Pinot Grigio again without thinking of Mama Hop and smiling.

The Only Way Out Of Grief Is Through It

There are defined stages of grief (five to seven depending upon which model you use): 1. Shock/Denial 2. Anger 3. Bargaining/Guilt 4. Depression 5. Acceptance and Hope.  They manifest differently for everyone.  As far as I can tell, there is no "What to Expect When You're Expecting" type manual for grief.  There's no pregnancy-type app you can download that says "Today you're 26 weeks pregnant.  Your baby is the size of an eggplant.  Her eyelashes and fingernails are sprouting."

Maybe I should design one.  "Today you're twelve days into grief.  You'll make a caprese salad using the basil plant your mom loved so dearly and remind yourself to Google how to take care of it.  You flip through your recipe binder while making a grocery list and realize that 90% of your recipes are on lined 3x5 inch note cards from your mom.  It occurs to you how much her handwriting looks like it's in italics; a distinct forward slant.  Did the nuns in high school teach her that?  A lump forms in your throat when you realize how you're going to have a cooking question in the future and you'll go to grab your phone and realize that she won't be on the other end of it with a response."

As far as the stages of grief go, shock has become my friend.  Daily activities are carried out in a mechanical fashion, emotions dulled by a sense of numbness.  Feelings that were once vibrant and dynamic are enveloped in a haze.  People speak to me, trying to convey information.  Their lips are moving but I hear nothing.  The world is happening around me and I'm not participating in it; I'm merely watching it.  Is it horrible to say that I don't mind it?  It's comforting; a layer of protection from the reality that you know will come.

That reality is something I am dreading.  A hospice nurse told me "The only way out of grief is through it."  Do I have to drudge through it?  Can I skip it?  Please??  

When my Dad died, I implored my friends and family not to send plants and flowers.  I didn't need all of this foliage around my house serving as a constant reminder; green leaves rubbing my face in the fact that I was now fatherless.  I wanted to ignore this fact.  I wanted to skip the grief.

With my mom, I realize that foliage or not, I can't ignore this.  She's everywhere - EVERYWHERE.  It's not just the recipes; it's the kitchen table my kids eat at every day that she tiled herself during her mosaic kick.  It's in my jewelry, my clothes, and my shoes (she had a thing for complimenting shoes).  It's in my childrens' clothing, their toys, and their art supplies.  Her memory is embedded all over this house.  Don't even get me started on my sister and how my mom radiates from every idiosyncrasy Leanne exhibits.

Where was I going with that thought?  Oh I don't know.  Welcome to my scrambled brain.  It's that haze I was telling you about.

Let's get back to the logistics: 1.  Why did you disappear from Instagram?  2.  I just heard about your mom; what happened?!  I thought she was doing SO well!  3.  How's Leanne doing?

1.  Instagram - We love Instagram; our appreciation for this simple little form of memory storage is deep.  However, this feels too big...too heavy...too overwhelming for a small square and trite caption.  We'll be back to Instagram eventually...when we can somehow get a handle on this, remember how life used to go, and figure out how to chunk it out in small doses.  In the meantime, I'm going to try and document our journey here.  Writing has always been therapeutic for me.  Your feedback is also therapeutic.  Please don't hesitate to leave a comment or email CatfishWithKetchup@gmail.com if you're so inclined.

2.  What happened to Mama Hop???   I've struggled with this one.  How many details of this story should I share?  What's relevant and what isn't?  I just lived it and it was HARD; I'm not sure I have the energy to get into it again...Maybe for right now I'll just go with the simple explanation offered in the obituary: strokes tore through her already compromised vascular system.

3.  Leanne - God bless everyone who has Leanne's well being on their hearts.  Her ability to cope has been the greatest of the emotional burdens I've carried during this journey.  So far, she has amazed me.  And while I am hesitant to offer an enlightened conclusive statement on the situation, I believe this magic that the extra chromosome possesses is illuminating this process for her and for everyone she comes into contact with.  There have been too many fortuitous moments that awe us and she is always at the center of these gifts.  More on that later. 

Mama Hop encouraged me to write.  She encouraged (at times annoyingly so) me to write more...she wanted me to find a career that utilized my writing skills.  While finding a career is the last thing on my mind right now, I know that I can honor her legacy by writing.  And right now, I can memorialize the altruistic spirit that defined her by writing about this journey - especially as it pertains to Leanne.  You can find a lot of information out there about grief as it pertains to adults and even children...but helping an individual with Down syndrome work through the loss of a parent, that's uncharted territory.  But as I tell Travis every day, "We're doing this.  It's happening."  The only way out of grief is through it and we're here, reporting for duty.  And I will do my absolute best to help Leanne realize that she's safe, protected, and surrounded by love.  

The last interaction I had with my mom before she became unresponsive was when I told her, "Mom, everyone is doing well.  Leanne is adjusting to our family beautifully.  The girls love school.  We're handling it.  We're going to be okay."  She briefly opened her eyes, smiled, and said "Okay."

In Loving Memory