Finding Amber 2

It was Amber's 20th birthday - the birthday that straddles the winding river between teenage-dom and adulthood. My sweet daughter - true to nature wanted to go to Skate Country and spend the day with her sister skating and having icees and pizza.  We figured that on a summer afternoon on Friday the place would be open and didn't bother to see if was before we left the house. 

We drove up to a completely empty parking lot and learned that the skating rink was only open at night.  Quickly recalculating, I said - "Hey do you want to see Finding Dory?  I know I have Group-Ons for it."  Both girls gave a resounding "YES!" and we were on our way.  

I have blogged before about what the movie Finding Nemo had meant to me.  I had seen it with Amber in 2003 when she was seven and had been diagnosed on autism spectrum for four years at that point. Here is the link for the original blog.  Click here to read Finding Amber .  We had seen the movie again in 2012 and it touched me as a parent of a child with developmental disability and how far our journey had come: from Amber's first diagnosis as a toddler,  fearing that she would not be able to take care of herself, over compensating by doing everything for her and worrying about how people would treat her.  So here we were in a dark theater getting ready to see Dory's journey as a fish with short term memory loss and her flight into adulthood.  One of the really cool things was the audience was not so much composed of little kids but of teens who loved Finding Nemo and wanted to relive the magic of that first movie. 

As the young sweet little Dory works up the confidence to ask questions of her parents or other people - she must always preface it by "Hi. I'm Dory. I suffer from short-term remembery loss."   She also worries that she's constantly letting her parents down.  Of course, I got the feels immediately.  The sight of this sweet little thing trying to find her way in the world hit home and having to apologize for her disability was heartbreaking.   Her parents try to keep her safe but a rogue current carries her away and she is lost.  Unlike Nemo, young Dory can't remember exactly where she lives and as years go by, she starts to forget who her parents are.  It's a worst case scenario for any parent but for a mother of a child with a developmental disability it exposes your worst fear.   You then see Dory over the years - growing  up, constantly asking for help, explaining her disability and swimming further away from home.  Eventually, she meets Marlin and helps him find Nemo. 

It didn't dawn on my then, but in Finding Nemo, you had two characters with disabilities who had to take control and eventually help save the day when most people would have written them off. I was so focused on Nemo and his handicap that Dory seemed more of a comic foil than a character who was also struggling with her own challenges.  But her way of handling life actually made sense - she had confidence in herself because she didn't have any other choice.   When Marlin talks about wanting to protect Nemo from everything her response is a wake-up call to any overprotective parent:

Marlin: I promised I'd never let anything happen to him.
Dory: Hmm. That's a funny thing to promise.
Marlin: What?
Dory: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

When I first saw this - Amber was a child and the idea of her

being out in the world was theoretical - it would be years before she would be on her own and it was just something I didn't want to deal with at that point.  I just wanted to keep her out of harm's way, keep her from getting her feelings hurt from kids who might make fun of her, keep her from trying something new that she might fail at and feel embarrassed.  But the reality was that I wasn't so much protecting her - I was protecting me.   The idea that the world would not embrace your child because they are out of the norm is scary so you overcompensate.   You answer for them, you do as much for them as possible to soften the blow of anyone hurting them.  

There are so many plans that you make from the time your child is born - the birthday parties, the dances at school, the first boyfriend, the prom date, the wedding day.  Then you are told that they are on the autism spectrum and will go on the special education track.  The idea of how they will be as an adult one day is sidelined so you can get them from pre-school, to kindergarten, to grade school, hoping they can make it through the challenge of middle school and then high school.  At graduation, they will get a special education diploma which means that after 12 years of school they still need to take a GED to get into a community college or get a job.  You see the posts from parents who spend the spring of their child's senior year on social media wondering if their child got into the college of their choice.  You are just hoping that your child will be able to find a job, find an apartment and make ends meet.  You worry that you need to plan financially to still support them in adulthood and provide for them in your will to help them when you're gone and pray that her sibling will keep an eye on her finances.  It's pretty heady stuff to deal with when your kid is just getting out of their teens.  

As time goes on - you realize that your plan was just that - an idea but that nothing is set in stone.  You have a chance to create something out of the norm and because there are so few books about girls with autism.  You realize that you are going to have to make it up as you go along.  A plan is not really something you can ever really count on and you have to take things day to day.  Dory exemplifies that and says rather forcefully at one point, "I've never had a plan in my life!" 

For us control freaks that line seems like heresy. How can you never have a plan - how can you go through life without knowing how to get from point A to point Z - there always has to be a plan for God's sake!   But as Dory explains further,  “The best things happen by chance."   So I reflected on that quote and having a daughter who has what the world perceives as a disability - autism.  She is in my life to teach me that the most wonderful things happen when God laughs at your plan, throws it aside and gives you something incredible that you might not be able to comprehend at the time.  

Amber cannot be simply defined as someone with a disorder, a disability, or a disease - she is my daughter and one of the sweetest, kindest people I've ever met.  While some signs of autism, particularly Aspergers, can seem like the person you love is not connected and can be obsessive/compulsive - we've been lucky that Amber's symptoms are pretty mild and how they manifest are different in girls than boys.   She gets jokes, has a sense of humor and loves animals.  She still has a hard time making eye contact but her social skills have come a long way since she was younger.   She's rarely given me any type of female teenage drama that most parents must endure.  I can count on one hand the number of times that she's ever rolled her eyes and said "Whatever!" 

In a recent interview, the director of Finding Dory Andrew

Staten explains how he sees Dory and how he wanted to bring in her back story and relationship with her mother and father.  "Her parents don't try to change her. They just want to help her own who she is. Being a parent and seeing my kids grow up and enter the world, I realize that all kids are born with certain temperaments, flaws, quirks — and it will probably be who they are. You probably spend most of the time worrying about those things as a parent, too — you don't lose sleep over the things they do well. The best quality I could give Dory's parents is that they never doubt her." 

At the end of the day, I think most parents worry if their kids can make it on their own.  If we've done our jobs hopefully they will be creative, independent and loving people you've always prayed they would be.  Dory, even in light of her short term memory, is strong, smart, loyal and can even speak whale.   To quote Dory, "You have to let go and see what happens," because despite your best efforts - you won't be around forever no matter how hard you try.   And when that day comes - hopefully you'll have a good laugh with God about your plan. 

The Sonny Side of Life

The first time the kids and I saw Sonny is was at a shelter called CatNip Cottage.  We were looking for a companion to our tuxedo kitty Skittles who had just lost about 1/3 of his tongue in an accident and was now permanently regulated to being inside.   We felt bad and wanted to find him a companion to make up for the friends he was losing on the outside. 

I had researched places to adopt kitties and found this lovely shelter that had a website where you could look at videos of the cats before you went to adopt them. Sonny’s profile had the headline “Instant Purrer” and in the video you could actually hear him purring.  His on-line bio stated that he had been abandoned with his sister in a box at a stop sign in Alpharetta.  Some volunteers noticed the kittens and brought them to the shelter.  Sonny’s sister was adopted first and he was left there just waiting for a family to love him.

So on that Fourth of July weekend eight years ago, we went to the shelter after selecting him on-line hoping that our hunch would be correct- that this little kitty would be the right match for the cat we had at home.  The woman at the shelter opened the crate and this little black and white cat immediately walked up to Amber and licked her face.  We were smitten and knew immediately he was meant to be part of our family. 

We brought him home and our other cat Skittles was not so sure- he hissed and spat at him.  Sonny took it in stride and didn’t answer back – realizing this other feline was the alpha cat.  We reassured Skittles that he was still our baby and by the end of that Independence Day weekend – they were grooming each other and the best of friends.

Amber finally had a cat who she could put in a baby blanket and hold like an infant.  Sonny would gladly oblige because being loved by his girly bear beat being in a shelter any day.  Skittles realized there was someone who actually liked playing baby-time with Amber and it took the heat off of him. 

As Sonny grew – he got taller than Skittles, but he never forgot the pecking order.  One time I saw them both standing at a door that was closed.  Skittles looked a Sonny who got on his hind legs and tapped the door until it opened – he then waited for Skittles to walk through before he also went inside the room.   It was hilarious and almost a little cartoonish but that was there relationship and Sonny never pressed his size over Skittles.  

Then one day four years later, Skittles started to not feel well and was losing weight.  We tried doing everything we could to help but nothing – even feeding him with eye droppers and making kitten glop seemed to help.  I had just been laid off and we just didn’t have the money to take him to a vet to find out what was wrong.   Sonny stayed by his friend’s side even grooming him because Skittles didn’t have the strength to do it himself.  He was pretty weak and I gave him a bath to make him feel better.  We were posting updates on Facebook and people were sending prayers.  The next morning he was gone.   After we said good-bye to our little cat, our Son-bear would lay down in the spot on the rug in our bathroom where his friend had died.  He often stayed there for hours at a time. 

In the months that passed, Sonny became more serious and not as playful because he

missed his friend.  People like to dismiss animals as not having good memories or not capable of grief but he was grieving.  He visited all the places that his friend used to go in the house to hide from the chaos that two kids can bring about.  He did start to jump up on the chairs or even the table at dinner time and wanted to be part of the conversation.  He wouldn’t try to steal food (at least not most of the time) he just wanted to be included in the conversation.   He would still tolerate baby time with Amber but it was more out of duty then being playful. 

Four months later on New Year’s Eve, we decided that like Skittles, he needed a friend to play with and went to the same shelter were we had adopted Sonny.  This time it was a six month old white kitty named Vanilly who was ironically the last cat to be adopted out of that shelter since they were closing their doors.  We brought him home in a pink pet carrier.  He was afraid to come out of the little box since he had spent almost all of his short life in a shelter not used to the sights and sounds of an actual home.    Sonny was near-by wisely trying not to scare this new-comer who warmed up to him and after a few hours left the security of the carrier and began to investigate things.  He started to play with Sonny who played back but without the vigor he had before Skittles died.  He felt more like the elder statesman and Vanilly was the young brash cat who had a knack for knocking things over and running to Sonny for help.

Many times Sonny felt like more of a dog than a cat.  He’d beg for lettuce even though he was well over 20 pounds.  He would sit on the couch 

and watch TV with Amber or make a hammock under the lining in Danielle’s box spring and hang out there.  He would come when I called and asked him to "see mommy."  On Sunday nights, he’d come upstairs and watch Desperate Housewives with me.  I would actually turn to him and ask if a specific plot point seemed weird – he’d just look at me and meow in agreement.   When DH went off the air, he’d sit and watch The Walking Dead with me, Max and Amber or Breaking Bad with us on Netflix.   More than anything he wanted to be part of what we were doing.   Many a morning, I would wake up to find Sonny at my feet – touching my toes while purring in his sleep.

On Max’s 50^th birthday, Sonny started to choke on a piece of food.  Max was home luckily and gave him the Heimlich maneuver and the food was expelled but for a minute there it seemed too late and Sonny got limp as if he was dead.  Then he came back while Max was holding him.   After that day, he was seemed to be his old playful self, bopping Vanilly on the head, pinning him down and chasing up and down the stairs – all of which Vanilly loved and thanked him by grooming him on the head.  Our best guess was that he was dead in that minute but the angels and Skittles sent him back knowing how heartbroken we would be if he left us. 

Sonny also had a knack for being the center of attention and when I would record my Princess or Ann Coulter videos, he would jump on the chair I would be using with the lights blaring – ready to perform with me.  I’d write parts for him such as The Royal Kitty; Ann Coulter’s Stupid Cat named Stupid and most recently – Sister Mary Cat in a web-series about a rogue Nun who says what she thinks and ends each segment with a chat with her beloved kitty.  It would amaze me how well he would put up with me and the cameras but he seemed to genuinely enjoy it.  And as far as acting partners go, he was one of the best I’ve ever worked with – on-time, hitting his mark and always knew his cues.  He also was not distracted by his cell phone which also helped speed up the production process.  He also looked great on camera.

A few weeks ago while getting ready for a visit from the Vice President and High Holidays at the synagogue where I work, Max called me to tell me that he thought that Sonny we not feeling well.  That morning I had seen that one of the cats had gotten sick on the carpet but didn’t think much of it since Vanilly does that from time to time.  I got home and tried to see what was wrong.  He seemed to be dry hacking and spitting up.  Later that night, he went into the bottom of our master bathroom shower and just wanted to stay there.  I tried to get him to drink but he was not having it.  He had been sick before – in fact when he choked and Max saved him – he was having hard time getting food down.  He spent the night in our bathroom and was purring but not really connecting too much with us.

I woke up that morning and tried once again to get him to eat but he was not interested which for a 20 plus pound cat is not normal.  I asked Amber to keep an eye on him and she said around noon that he still had not moved much.  This time around – we had the money to take him to the vet’s office so I made an appointment that afternoon.  Max picked him up and brought him in a laundry basket because being the big boy he was – we did not have a carrier big enough to bring him.  Max called me and let me know that the exam revealed that he had a blockage in his bladder and that they could unblock it and he should be fine.  I felt a huge sense of relief and moved some money so that we could pay for his care. 

When I got home – he seemed out of it from the procedure so I just figured it was the anesthesia.  I sat down and got him some water which he started to drink and really it felt like we had turned a corner.   That night – he wanted to stay in our bathroom and we brought in his litter box, food and water so everything was in one place.   The next morning he was still groggy but again I figured he was still wiped out from the vet's office.  I brought him into bed and told him how much I loved him.  I got ready for work and asked Amber to keep an eye on him and see if he managed to get something to eat.  We had a case of special food and antibiotics to give him that the doctor had prescribed.

I was in a meeting all morning and when I got out – I called home and Max answered.  I was surprised and wondered if he came home for lunch to see how Sonny was doing.  I asked if he was doing okay – Max paused and said “Sonny passed away about 30 minutes ago.”  I lost my breath and I uttered a very loud “NO!! NO!!” over the phone to the point that a co-worker came in to see what the matter was.  I told her that Sonny had died while trying to keep from completely losing it.   Max told me that Amber had called him after she checked on him and he was not breathing.   He cancelled the rest of his meetings and went home.  He was not sure how to tell me.  I told him I would be home early from work that I could not leave immediately but I would cancel the rest of my appointments as well.  I went into the bathroom and closed the door.  My body shaking because I had just lost a very dear member of the family.  I managed to pull myself together – do the rest of my work and get some checks signed to cover the Vice President’s visit.  I was amazed at how well I was able to function probably because I was still in shock and the reality had not really hit me yet – maybe it was just a colossal mistake and he would be just sleeping when I got home.  Once I was in my car, the tears started to flow and the song “See You Again” played.  I just let it play as the warm salt of my tears flowed down my face.  I got home and asked Max where Sonny was.  “He’s actually in the same place that Skittles died.” 

I went upstairs and saw my sweet little guy – looking like he was asleep but obviously was not.  His pink nose was now gray.   I touched his fur which was still soft but his purr box was silenced.  Max said that he would wait until the kids and I said good-bye and that there was a special place in the garden just for him – next to Skittles and Coogy – a stray baby cat we tried to nurse back to health but who died 10 days after we found her.   I told him how much I loved him and how much I valued his friendship.  I talked about the shows we watched, how wonderful he was to Skittles and Vanilly and how much we were going to miss him.  I had the kids come in to say good-bye.  They talked to him too and petted him – Danielle even got some of the fur and put it in a plastic bag.  I wanted them to see that death could be peaceful and not something to be afraid of. 

I told them how lucky we were to have known him and at least he didn’t suffer for long.  He knew we loved him and that maybe God found a family that needed someone like Sonny to help them and that’s why he was called away from us and back to heaven.  Souls like Sonny are very rare and there is only just so much to go around.   At the point that we had said all our good-byes – Max wrapped him in our best golden towel and buried him under the rose bush in our garden. 

That night I hugged my family a lot tighter.  We sat around saying how on Sunday, Sonny was jumping on the counter, drinking out of the faucet and chasing Vanilly and now on Wednesday night – he was gone.   This one really hit hard.  Skittles had been sick a long time so at the point that he died, it was sad but not unexpected.   We had Coogy just 10 days so while losing one so young was tough – we had only known her 10 days  We had a cat expert tell us that something was wrong – her mother sensed it and left her behind – so there was nothing more we could do for her but love her and make her comfortable.  But Sonny was a huge blow – we just thought we had more time with him.   We tried to do right by him - we had money to get him the medical treatment he needed. The vet assured us that he would be fine in a few days but it was not even 20 hours after the appointment and he was gone. 

In the days that followed, all of us would veer from sad to sobbing to feeling better and then feeling bad that we did not feel worse.  That’s the nature of grief – it’s not consistent and you never know when you’ll go from laughing to crying.  I wondered if Sonny had been living on borrowed time after he nearly choked to death and if God had extended his time with us because we needed to learn more from him.

Some of my greatest teachers have been my pets.  They give you love and understanding and see you as someone worthy even when the world can make you feel lower than pond scum.   They teach you how to love, how to care for something greater than yourself. They teach you that miracles can happen – that animals like my cat in college Gizmo can survive being hit by a car and falling off a third story balcony, that Skittles can survive losing 1/3 of his tongue and that Sonny can get the Heimlich and come back to life.  They teach you that life goes on and while you may swear that you’ll never get another pet and open yourself up to that kind of heartache – the universe sends you another creature to love just as much but without forgetting those blessed pets that came before whose lessons will help you become a better person.

Their greatest gift is to teach us how to deal with their loss so when we lose someone that we truly love and feel that searing pain that brands our hearts which seems impossible to overcome - we've learned there will come a day where you can talk about that person not in sadness but about all the wonderful things they used to do that made you happy, that made you love them and as long as you have that – they are never really gone.  They are as close as that blessed memory.

Yesterday, we were pulling into the parking lot at Target and we saw a little stuffed bear in front of us that looked like it had been left behind by a child.  We put it up on the cart area so that if the person who had lost it came back they would find it.  When we came back 90 minutes later and the bear was still there.  We decided to take it home rather than have someone throw it out.  As I put the little stuffie on the dashboard I realized he was waving to us.  I then started to cry because we used to call Sonny our little bear and as much as some people think the universe is random – this sign was not.  It was Son-Bear saying “Hi- it’s me and I’m fine – tell everyone I said hello and I love them too.”   That seemed a fitting message and wherever possible – I’ll always try to see those little miracles whenever they pop-up.  That was my friend’s greatest lesson - to always look at the Sonny side of life. 

The Replacements

The other day I came across two boxes that were hidden in the back of the garage that had to be moved because there was a leak from the top floor shower dripping on them.   The boxes had undoubtedly been there for many years - probably since we moved into the house in 2004.   As I started to go through them trying to salvage what was wet, I realized that these boxes were more of time capsule than anything else.  They were a mishmash of things that were thrown carelessly together in an effort to move our lives quickly from one place to another.  I probably had the intention of unpacking them immediately once we moved into the new house before life distracted me from that goal.  

There was an interesting conglomeration of items - the petticoat from my wedding dress along with my wedding veil which were wet but not moldy.   I was able to save the petticoat and veil.  It was amazing how well they looked after a quick wash and line dry.  I'm not the size 4 that I was when I got married but at least the veil still fit. There were my high school year books that didn't get wet thankfully, old photos in plastic frames that were protected, and an ivory pipe collection from Max's side of the family had only a little wear and tear.   Finally, I found some old clothes of the kids that probably should have been donated rather than moved.   Knowing me, I probably thought they would get a few months more wear before they went the Salvation Army.    I put the damp clothes in the washing machine marveling at how little they were once and that their butts actually fit into these little sweat pants and dresses.  

I'm know I'm not the first person to say how fast the time goes when you have kids.   Time seems to slow down when they are babies and you are sleep deprived - you wonder when they will be able to do things for themselves.   Your whole life is about taking care of them - seeing to their needs.   You might have momentary feelings of resentment - when you just want five minutes in the bathroom to yourself but you need to have them in there with you so you can see what they're doing.  Everything has to be baby proofed once they get mobile.  Then when they are toddlers - they are all about saying "I do it - I do it" so emphatically that you let them even if you know that glass of milk they're pouring will end up over the counter and raining droplets on the floor.    Time speeds up once you are able to sleep through the night and their infant bodies seem to double and triple in size at a lightening speed.   They start to talk in full sentences and let you know exactly what they think and will ask you a ton of questions.  They develop this bold brightness - this trust in the world and their ability to navigate it. You marvel as they go into pre-school and let go of your hand so quickly to be with new friends or holding on for dear life because this new situation scares them.   In elementary school they have homework and school projects that make you realize that you are not smarter than a second grader much less than a fifth grader.  

I guess for me the wake up call on how fast it all goes came when Amber was about 10 years old and still in grade school.  We had gone and done some back to school shopping and gotten new shoes to start the school year.   We'd gone to Payless Shoes and found a wide variety of Barbie, Bratz and My Little Pony shoes.  I made a little joke about the Barbie shoes attacking the Bratz shoes which Amber just rolled her eyes at.   Six weeks later I noticed blisters on the tops of Amber's toes and asked her what was wrong.  "My shoes are really hurting me,"  she said.   I always buy shoes at least a half size bigger than what they are wearing and asked her to put on her shoes.  Instead of having toe wiggling room, I could see how her toes were crammed into the top of her sneaker.    We went to get shoes that night.   The sales lady took one look at her feet and got out the women's foot measure.   "She's ten and we just bought some little girl shoes a few week ago, how could she be in a women's size?" I asked.   The sales lady laughed - "Sometimes they literally grow over night and it look like she's a women's 5 1/2."   When Amber heard that, she was off like a flash to the women's department trying on bright red pumps.   I ran after her, past the the Barbie and Bratz shoes that I had casually mocked a few weeks ago and now was sad that I would never buy again for my daughter.   I found some sensible flats for her to try on to which she responded - "Those shoes are for little women Mom, they're not for me."   Gulp.   My daughter was turning into a young woman right before my very eyes and I was not ready.    

Daniel went from being my easy baby to a toddler with strong opinions about everything.   He's always known how to use his fair haired good looks to get what he wants.  When he was a toddler, he figured out how to climb out of his crib and go down the hall of our apartment at the time to see what we were watching on TV.   He'd get picked up and put right back into his crib.   One night as Max and I were watching The Gilmore Girls, there's three year old Daniel crawling on his stomach Marine style with a blanket, a small pillow and his favorite stuffy, Pup-Pup.   Once again, we told him "Get back into bed."  He looked at us with a mischievous smile and said "I in bed."  Technically, he was right, he had brought the contents of his bed with him - so yes - he was in bed.  Ah, loopholes - my first insight to the fact that my son might just be a lawyer.   Since then, he's become the family's resident expert on the Titanic and other shipwrecks.  But now he has set his sights on bigger things than just cruise ships - he's created his own country of Asoman which is in the Pacific and has it's own language, form of government, exports and currency.  He's even designed a flag and buildings for the capital of the country.    Some kids do Fantasy Football, my 11 year old son does fantasy countries.  

Those things ran through my mind as I got their time capsule clothes out of the dryer - and held them in my arms - still warm from the dryer and smelling of fabric softener.   The stripped green pajamas they both wore because it didn't look like a girl's or boy's PJs.  The little sun dress that Amber wore in the first grade.  The blue sweat pants Daniel used to wear to the park when he was 18 months and would sit on the swings and want us to push him.   The sight of them together holding hands and six year old Amber admonishing us for giving a time out to a two year old Daniel for breaking something he was told not to touch.  "How could you possibly punish this perfect little boy?" she asked with one hand on her hip and the other hand in his.    I prayed then and now that they will always stay best friends and look out after each other like that. 

As I put those clothes in the box to donate to St. Vincent DePaul, I realized that my children are growing up whether I wanted them to or not.  They are the next generation - our replacements.   They are also two of the smartest, funniest, creative and loving people I've ever met.   And while Max and I might not be perfect parents (Good God- who is?) I'm going to look forward to seeing what sort of adults they turn out to be.  My guess is that the future is in very good hands.