The in-between day

One year ago tonight (Feb 28th) I said goodbye to my mother.  She took her last breath in the wee hours of the morning of March 1st.  This year, because of the Leap Year, there is a full day in between to mark the anniversary of her death.  It is as if that short time span between when my mother and I had our last interaction and when she died has unexpectedly expanded into 24 hours.

I am not sure what to do about this.  Ever since I read an article Sunday sent by the hospice on “marking the anniversary of your loved one’s death,” I have been wondering about this day. 

They say “timing is everything” right?  My mother’s timing was purposeful on the day she died.  There was a white board on the wall at the foot of her bed which announced “Today is Feb 28” and a clock right above it.  Mom struggled through that day, fading in and out of consciousness.  People came to say goodbye, people came to pray.  My brother and I and our family members took turns alone with her, telling her we would be okay, telling her we loved her, staying by her side.  I struggled, too, as I watched the dying process, wondering how to do it, wondering what would make it better, wondering what would happen next.  Mom waited until only my brother and I were in the room to take that final breath.  She waited until she heard us say we were ready to let her go.  And she waited until March 1st. 

At first I thought this was Mom’s way of making sure we’d get just a little bit extra from social security in her inheritance.  She was a very efficient, business savvy woman after all, and it seemed fitting that she would know about that detail.  I am sure she knew exactly what the clock said somehow. 

But now, a year later, I think perhaps there was a different reason for her timing.  Maybe the transition between life and death is not so finite as we who are living can know.  Maybe there is a space in-between that is more important than the timing of the goodbye, or the finality of the last breath.  Perhaps my mother chose the time she did so that one year later we would be reminded that it wasn’t the 15 minutes into March 1st that made the real difference to her or to us, but it was the process of moving through that time together to the other side.  Maybe being in that moment, helping her to die in the way she wanted, recognizing the connection we had with her and knowing that our love would continue… maybe that whole process was worth its own day, something too powerful and important for just one time stamp on a calendar.

All day today my brain has wrestled with these thoughts.  And all day today my mother has been gently nudging me toward this realization.  The swan I saw on the green outside the university as I drove to meet with Alex’s clinicians, the bluebird pin on the convenience store cashier’s sweater, the child’s “C” charm I found outside the door… little things, maybe random meaningless little things… all brought Mom to mind.  They were things I would tell her, reminders of something we shared, little odd scenes of life that didn’t seem to fit with the rest of the day.  Kind of like clues pointing to all the things I don’t really know or have yet to learn about life.

Tomorrow I am going to pack up clothes to give to a cancer charity, then I’ll take time off my regular job to read aloud in my son’s classroom.  I’ll eat lunch with some autism mom friends, have an important meeting at the residential treatment center and come home to hang shelves in my daughter’s room.  After laundry and dinner and phone calls and emails, my daughter and I will have a “girls night” together in front of a movie on the couch and snuggle up.  To any casual observer, my day will be busy and productive and all about juggling the many important responsibilities in my life.  But to me, alone in my heart, tomorrow will be all about my mother.

mom cat wig shop

Alex-isms

wary of little sisterOkay, you all know my daughter Hannah can throw out the funniest one-liners.  She’s got the language, the attitude and the comic timing of a pro.  But she’s not the only kid in the family whose sophisticated sense of humor keeps me in stitches.  Alex’s humor is a bit harder to blog about– since most of the stuff that cracks him up is visual or slapstick (email me for the link to his YouTube channel if you like!)– but over the years there have been several memorable moments of perfectly-Alex funny which will always stick with me.

alex pumpkin2Alex loves to mix up words or find alternate meanings for words and phrases.  His receptive language, reading comprehension, spelling and writing abilities are right up there with super-smart typical kids.  Only difference is the challenge he has with expressive language and getting the words out.  For your reading pleasure, some of my favorite “Alex-isms” :

 *x*o*x*o*

alex grinMe (talking out loud writing a grocery list):  “… tomato sauce, diced tomatoes, kidney beans… ground meat, chicken… Alex, would you help me write the rest of this?  Write down what you want at the store.” 

Alex (taking pen & paper):  “ketchup, mustard… butter… mutter… Mommy!”  with a big winky grin.  Hands paper back with the rest of list printed and a smiley face drawn and labeled “mommy.”

*x*o*x*o*

At bedtime, Alex breaks into spontaneous giggles during cuddle time:  “Mommy, go to SHeep!” 

Me:  “Go to SHeep?  Silly boy, you mean go to—” 

Alex:  “Baaaaaaaah!”

*x*o*x*o*

charming alexAlex (huge charming grin, playing his version of Scrabble):  “Word!” 

Me (laughing):  “Dude, truck-azonkquilapsafo is *not* a word!”

 
*x*o*x*o*

alex's bowl and plate artAlex (age 3 in doctor’s office, singing to himself while Mom & Dad consult with the nurse):  “Bah-munty.  Da funty munty. .. Bah-munty munty…” 

Dad:  “Wait a minute, our son is singing ‘Brass Monkey’ by the Beastie Boys!” 

(and indeed he was– in perfect rhythm!)

*x*o*x*o*

alex goodbye pleaseMe (walking Alex to the door to let in a home program teacher he didn’t particularly like):  “Let’s open the door for our friends.” 

Alex’s welcome message:  “Goodbye, please.”

 
*x*o*x*o*

alex laundry chuteWhen Alex was a baby, I made up some ridiculous nicknames for him (as all new mommies do when they babble with their newborns).  One of my favorites was “Bunny Luv Pickle Pop” and I used to sing it to the tune of “Sugar Pie Honey Bunch” by the Temptations.  One of Alex’s first home program teachers finished a session of discrete trial training with him, spontaneously turned to Alex and in an animated voice said “Bunny Luv!!” to which 4 year old Alex responded without hesitation, “Pickle Pop!!”

*x*o*x*o*happy kiddos
 
 
 
 
 
 

The word behind the words: MOTORCYCLE

Me:  “Yo, dude.  What do you want to do today?”

Alex:  “Motorcycle.”  (tilts chair back, sits in relaxed too-cool-kid pose, looks at me with mock serious slightly emo expression)

Me:  “Motorcycle?  You wanna ride a motorcycle?”

Alex:  “Yes.”  (slight smile forming, but still staring me down trying to get across the seriousness of his request, seeing if I’ll take the bait.)

Me:  “Dude *you* have to have a driver’s license first to drive a motorcycle.”

Alex:  (smiling, walks up to me, clears his expression & gets serious again– looking me right in the eye, almost nose to nose)  “Mom.”

Me:  “Yes?”

Alex:  “Bring motorcycle.”

Me:  “Dude, I don’t have a motorcycle.”  (thinks a minute)  “But Aubrey actually has one…”

Alex:  “Mom.  Bring Aubrey’s motorcycle to drive for Alex.”

The WORD behind the words:

Me:  “Yo, dude.  What do you want to do today?”

Alex:  “Motorcycle.” 

translation:  “I wanna go out, I wanna *move* and go fast.  I know Mom would be with me on this one, I just have to get her attention.”

Me:  “Motorcycle?  You wanna ride a motorcycle?”

Alex:  “Yes.” 

translation:  “You know I’m really gonna try for this, don’t you?  I know it sounds extreme, but trust me, Mom, this is gonna rock!”

Me:  “Dude *you* have to have a driver’s license first to drive a motorcycle.”

Alex:  “Mom.”

translation:  “Do you see how serious I am?”

Me:  “Yes?”

Alex:  “Bring motorcycle.”

translation:  “Mom, seriously.  I know you can get us transportation.  I’m counting on you.”

Me:  “Dude, I don’t have a motorcycle… But Aubrey actually has one…”

Alex:  “Mom.  Bring Aubrey’s motorcycle to drive for Alex.”

translation:  “Aha!  Now we’re talking!  Bring it over, let’s make a break for it.  I am so down with that.”

 

Do you have the “WORD behind the words” for a kid you love? 

Please do comment & share!

:~) .. the questions themselves .. (~:

ocean tide

I thought this quote deserved a special highlight today as it seems to perfectly describe my autism life journey.  If it also resonates with you, please share!

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“Have patience with everything that remains unsolved in your heart.  Try to love the questions themselves, like locked rooms and like books written in a foreign language.  Do not now look for the answers.  They cannot now be given to you because you could not live them.  It is a question of experiencing everything.  At present you need to live the question.  Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.”

Rainer Maria Rilke,
Letters To A Young Poet

~*~*~*~*~*~*~*~*~*~*~*~

autismhomerescue11241101

:~) Quote for the Moment (~:

autismhomerescue11241101“Miss Rhode Island, please describe your idea of a perfect date.”

“That’s a tough one.  I would have to say April 25th.  Because it’s not too hot, not too cold, all you need is a light jacket.”

~from the movie “Miss Congeniality”

 

A re-publish of one of my favorite posts:  One hour in another time ….

 autism home rescue 0104201101

for all mothers in less-than-ideal relationship situations

Some days I just feel compelled to throw out an entry in what I call my “required reading” category.  Today’s topic:

D.O.M.E.S.T.I.C   V.I.O.L.E.N.C.E

Big, bad, ugly words.  We like to think that those words don’t apply to us or to people we love because big, bad, ugly things happen in other families, right?  It feels better to believe– on this side of things– that we are somehow protected from crazy or impossible situations that we see happen to other people out there in the world.  If we thought “that could happen to us” every time we watched the news, then we’d be too fearful and anxious to survive daily life.  Makes sense to me.

Still, there are many, many people around us who are in difficult, destructive or dangerous situations.  Some are aware of their circumstances, their resources and their options.  But many are not. 

Because I am a woman and a mother, I’ve decided to address this post specifically to other women like me.  But domestic violence can happen to anyone, male or female, single or married, gay or straight.  Please be aware that although I’m writing woman-to-woman here in the interest of simple readability, whatever situation you– or your loved ones– may find yourself in, there are resources for you too. 

Here’s the truth about domestic violence in the United States: 

One in four women in the U.S. will experience domestic violence in their lifetimes.  It takes the average woman 7 times to leave an abusive situation.  Domestic violence affects women from all walks of life, all education levels, all socioeconomic backgrounds, all races, religions and sexual orientations.  It affects parents of typical kids and parents of kids with special needs. 

See:  The National Coalition on Domestic Violence (NCADV) fact sheet here.

Domestic violence is not just physical.  When one person exerts control over another, when someone is  threatened or harrassed or isolated from friends, when one person in a relationship controls all the money in the bank account, for example, or won’t let the other person leave the house when they want to, that’s domestic violence too.  Just because nobody physically harmed you, doesn’t mean harm hasn’t been done.

See:  Information from NCADV on psychological abuse here.

 

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Over the years, both personally and professionally, I have encountered many helpful mantras for coping with less-than-ideal relationship situations.  I share some of them with you here in the hopes that if you find yourself needing encouragement or wanting to help a loved one, something may resonate with you and encourage positive outcomes.
 
  • In healthy relationships, people don’t get punished for being who they are.
  • Just because someone yells and screams or makes statements in a loud, authoritative voice, it doesn’t mean they are right or that they are telling the truth.
  • Just because someone says, “This is the way it is!” does not mean it has to be that way.
  • When someone is being mean or abusive and telling you it is your fault they are angry, it is not your fault.  No matter what you do, you cannot control their behavior or reactions.  Even if you do “everything right” they may still be angry because their anger has to do with *them* not with *you*
  • Children are smart.  They know who really loves them, who has it together and who doesn’t.  No matter what someone else tells them about you, if you take a deep breath and focus on being the best parent you can be (and not feeding into the negativity coming from an abusive person), your kids will know what’s true.
 
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If you suspect a child or teenager is being abused or mistreated, call 1-800-4-A-CHILD or go to the Child Help website.

To find domestic violence resources (including shelters if you are in danger or support groups if you are concerned) in your state, click here or visit the Feminist Majority Foundation.

If you are seeking LGBT resources for domestic violence, click here for the Rainbow DV page devoted to information, links and support groups.

Local hospitals or women’s centers often have free counseling and/or support groups for women who have been victims of domestic violence.

Other helpful websites:

Eve Foundation: Ending Violence Everywhere

National Coalition Against Domestic Violence

 1-800-799-SAFE (7233) will connect you to safety resources in your area.

If you or someone you love is in a less-than-ideal relationship situation, there is hope for things to get better.  Please reach out for help, you are not alone.

Portia%20Nelson

graduated.

Graduated?  Hmmm…

A staff member and teacher at Alex’s residential facility told me on Tuesday that I had “graduated.”  I was walking with Alex up the big hill toward the gym after spending his lunch hour with him.  It was Valentine’s Day and I absolutely *needed* to be close to the only boy who will ever completely own my heart.  Alex is my love, and if he could express it in words I think he’d say:

“My mom is my best girl.” 

But of course, the spoken words usually elude him.  And he’s 11 now, not exactly the age for publicly confessing to parental attachment of any kind.

On our walk I was feeling calm, enjoying the unseasonably warm & shiny day, grateful for the feeling of Alex’s hand in mine, grateful that he was walking *with* me and not running ahead.  Grateful that we were both present.  Anxiety levels were low, warm & fuzzies were high.

I didn’t respond the first time his teacher said “you graduated” so she repeated it a few minutes later. 

She continued, “You graduated.  You’re not melting down anymore.” 

I laughed.  I’d certainly melted down on this poor lady on more than one occasion.  Each time she listened patiently, she reassured me I wasn’t crazy, she encouraged me, and promised it would get better with Alex here, that I’d learn and grow through this process and things would become alright.

“It’ll never be okay.  But it’s going to be alright.”

Choice words given to me by another autism mom with a kid like mine at the same place.  That was two months ago now, but those words still wind through my head once in a while, like one of those scrolling banners outside a shopping center. 

“Graduated.”

alex on the swingsWhen will that really be, I wonder?  Another word that scrolls by on the bottom of the movie screen in my mind, as I replay my Valentine’s Day walk and the special moments of that day with Alex.  I wonder if I’ll ever feel closure, if I’ll ever feel “graduated.”  If it feels “alright,” if I’ve passed the point of the initial meltdowns, does that mean I’m somehow farther along in the natural process of “autism mom?”  Or is this just how it will always be, intense experience with a continuous, ever-scrolling banner updating & explaining & punctuating my experience?

Sometimes this autism life really doesn’t make sense to me.  Or the words elude me, too.  But I keep thinking to myself that as long as I can be present, no matter how long the journey or how much work until the next “graduation,” maybe it will indeed become “alright.”

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