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The Unhappy Mother’s Day

May 1992 was my first mother’s day, Randy was born on the 19th, but that one was my first.

My name is Aileen and the day Randy was born was the best day of my life.  I had prayed for years for someone to love me unconditionally, and that day was the day it happened.

Randy had some delays and at 3yrs old, he was diagnosed with autism.  However, that didn’t change him in my eyes.  He was perfect. Aside from colic, he was the happiest, most loving person I have ever known.

He was non-verbal so I never heard, “I love you” or “Momma”.  But, his hugs were serious, he held me so tightly that I literally could not pull away…and I didn’t want to.  He would squeal when he was happy, and giggle and vocalize all the time.  (We called it singing)

He loved watches, trains, planes, music, game shows and cartoons.  His room looks like that of a young boy, with lots of cars, trucks and stuffed animals.

He loved sitcoms too, and we could not eat a meal without the TV being on with his favorite show playing…for the last several months it was According to Jim.

In his room, his TV was always on if he was home.  And for years it was hooked up to a DVD player but last fall we started playing Netflix for him…and lately Scooby Doo was the show that was playing, if it wasn’t Scooby Doo, then it was a music station…and his favorite was a 50’s station.

Through the years we were blessed to have some amazing people working with Randy.  Kizzy, has been a constant in his life for nearly 12 years.  So much so that we called her his “other” mother.

When Randy was 22 he was “aged out” of school and Kizzy worked with him during the day.  It was at this time that I decided that he needed more than just a routine.  He needed something to look forward to, and I was sure there were others like him.   So a friend and I started monthly special needs dances.  This evolved into Able Buddies NC (Buddy is a nickname of Randy’s) a non-profit organization that still hosts monthly dances and will someday provide employment for our special needs community.  My favorite part of the dance was when we would slow dance to the song “Speak Life” at every dance. And I would whisper “I love you, you’re my favorite”.

 

On April 14th Randy was at Kizzy’s house for the evening, and she called me.  She said Randy had a seizure and she called EMS.   My husband and I arrived behind the ambulance.  He was dazed and confused but he seemed okay.  I told him that we were going in the ambulance and that it was going to be okay.   As I helped him outside he wrapped his arms around my neck and had another seizure.   He came out of it and we were able to get him (fighting) onto the stretcher and into the ambulance.

Once we got to the hospital, he had 4 more seizures, all with me holding him and telling him that “Mommy’s here, I love you, Baby”. That last seizure he pulled me to him.   The last one, he stopped breathing.  I stepped out of the room so that the doctor and nurses could work.

The next time that I saw him, he was gone.  I sat on the floor running my fingers through his hair and kissing him, singing and telling him that I love him and that he is my favorite.

The nurse came in and asked if I was interested in organ donation. And I knew that we had to donate what we could, so that his life would be meaningful.

I know that I could be angry, and yes for a few days my faith was almost gone.  But God showed me several blessings that I am grateful for.

Someone had prayed for a miracle…Randy was that miracle.

Randy could have died alone…I was the last face he saw, and the last voice he heard saying that I love him.

He could have been ill…he wasn’t

He could have died a horrible painful death…it was fast…4 hours.

He was with Kizzy, had he been home, he would have been in his room and I would probably not have known about the first seizure.

I was blessed with a happy, unconditional loving, handsome, son for nearly 28 years.

And my sweet baby boy, died a hero.

His funeral was the 2nd worst day of my life.  Randy was my world and I am so lost without him.   I feel like I have traded the “autism mom” club for the “bereaved mother” club.

 

I leave his TV on if I am home, and I sleep in his bed cuddled up to one of his favorite stuffed Cliffords.  I can’t go to sleep without telling him “Good night Buddy, I love you” . I still have a folded pair of his jeans sitting on my couch that I cannot put away and we still turn on According to Jim when eating .

Tomorrow is Mother’s Day and I am dreading it.  I am not a mother anymore.

So hug your babies, no matter how old they are, be sure that they know that you love them.

Thank you for listening.

Sincerely,

Randy’s Mom

 

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The Best Christmas Present Ever!

When I found out I was pregnant at the tender age of 35 I was at the middle of a good career in commercial insurance, raising an 8 year old daughter and in the beginning stages of divorce.

Once we found out we were pregnant, we tried to reconcile, but it just wasn’t a healthy marriage for me.

When Bella was born prematurely, I was only 5 months along. That was the longest winter in limbo.  I also decided to give up my career in the face of the long road ahead raising 2 girls, especially with one facing an uncertain future.

Many questioned the decisions I made, including giving up a lucrative career, divorcing during pregnancy,  moving from a large city and moving  back to small town North Carolina, to surround myself with my village of family and friends.

When Bella was released from the hospital she was tiny. We didn’t have a home of our own, but my family opened up the doors wide for shelter and support.

Those early years getting Bella to her many Dr appointments and specialists were my top priority. My 8 year old had to grow up fast helping with bottles and diaper changes and tagging along to Speech, Occupational and Physical therapy along with treks to the Shriner’s Hospital in Greenville, SC for Bella’s cerebral palsy issues that affected her walking.

Back then, I felt guilty for all my oldest (we call Cookie) had to give up. Yes, the guilt weighed on me. Was I overlooking Cookie’s needs in order to focus on Bella?

I did the mom thing. I signed her up for basketball and cheerleading and tried to spoil her with material things. Cookie loved being able to be active in sports. She didn’t always like that, if I couldn’t find a trusted family member to watch Bella, meant either we chanced Bella having a meltdown from the noise or lights, and had to leave early or mom just had to let someone else take her to her practices and games.

As a single parent, especially if one of your children is special needs, we all face guilt or try some form of compensation for the other child or children. When the dreaded comment “ It’s always about Bella”  came from Cookie’s mouth, my heart broke for her, myself and Bella.

How do you explain to a child that she will have the privilege to grow up, have friends, drive, date, move away, and be an adult,  while Bella probably never will.

So yes, my life will always be about caring for Bella, but a mother’s heart also cares and prays and fears, for her other children to go out into the world solo one day, does it not?

This Christmas, Cookie gave me the best gift ever. No it wasn’t the Kate Spade purse or the expensive jewelry and makeup she spoiled me with. It was these words:

“Mom I have this nice apartment, a good high paying career at only 22, because of you.

All the times I had to get a “no” or adapt to a situation and see the decisions you made, although others didn’t understand it, with no apologies, and putting me and  Bella first, showed me how to be a responsible, compassionate adult. I’m not spoiled like some of my friends, because of the team you and I had to become, for my sister”.

Those words were a balmy and salve to my heart and soul.  Our children watch us. Not just hear us.

As parents of a child with an exceptional need, may bring  some guilty feeling within. We may question like I did, how do my other kids feel. Cookie is an adult now. I worry about her living  on her own, in another city,  more than I  worry about Bella, because Bella is always safe, with me a bedroom away.

In the beginning, I was just putting one door in front of the other, praying I was making  the best decisions for myself and both my girls.

It’s been an ever changing journey, but I wouldn’t change a thing after getting the best Christmas gift ever,  in Cookie’s words. I will let her continue to believe the Kate Spade was the best gift of the year. But my heart and spirit beg to differ.

~BBF

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Playing with Autism

My 25 yr old son,  still likes toys and movies that are age appropriate for a toddler or small child.  I say that, as it is not appropriate for a 25 yr old man to play with cars and airplanes, or to watch Disney movies.

Watching Buddy play with all of his favorite toys, I always thought of him as being “childlike”.  But while sharing one of my many “Buddy Stories” with a co worker this week, my perspective changed.

If you set a  neurotypical 25 yr old  man alone in a room with Hot Wheels, how long would it take for him to start playing? 30 minutes…15….5??

How many grown women get excited when their little niece asks them to play Barbies?  <raises hand>

Buddy will play with his Hot Wheels, and the retired Marine next door, just bought a ’67 Corvette…is that not a toy??

The only difference is that my neighbor  can

1. afford and drive a Corvette and

2. he WILL play with Hot Wheels cars, if he thinks that no one is looking.

I think about all the dad’s with little boys,  and how they always buy them the cool toys cars…how often do you think that the dad is secretly looking forward to playing with them…well, with their son AND the cars.

I flashback to a Christmas many years ago,  my brother D.  who was about 10, had gotten a Figure 8 Race Track.  We played with that thing for hours upon hours during our childhood (he probably still has it).  But we didn’t play with it on Christmas.   On Christmas we sat on my bed and played with his new tape recorder (see, I told you it was a long time ago!) And the first recordings that we made, included the background yelling and cheering of our older brother R (he was about 20) and my father, as THEY played with D’s Figure  8 Race Track for HOURS upon hours.

So this all broadened my perspective,  I have been enlightened, my son DOES play with age appropriate toys. And that tickles me!

~ASM