Merry Christmas

Here is is Christmas Eve and I feel like George Baily from it's a Wonderful Life.  If you have been stuck under a rock for Christmas and have never saw this fabulous movie, I strongly suggest it. If you are against old time sappy black and white films, please put that aside and allow yourself the pleasure of seeing the impact that one person can make on the world.  This entire Christmas season, I have been trying very hard to hide the fact that I too have felt like a failure in so many ways.  All I ever wanted to do was have a career that was satisfying, a relationship that was loving and the ability to be the best mother in  the world to a child who cannot provide for himself.  I have fallen under some tough times lately, I won't get into all of the details because I do have faith that God will bring me through this.  Christmas is a magical time, but it can also be a time of self reflection and a time when depression can set it.  I feel I was forced to leave a job that didn't validate me after giving them the best years of my life.  I needed a break, a time to take a rest from the rat race of running constantly and spinning my wheels only to find myself further and further behind the eight ball.  I have a lot of pride and I keep these things to myself.  A lot of things have been coming up for me, what is it that I am meant to do with my life, how can I continue to help support our family in this relentless economy, how can I stop the cycle of bills coming in and no way to pay them while trying to be a good role model and mother?  How am I supposed to do this when so many factors seem to be working against me?  I am a person who feels things happen for a reason, and my faith is tested everyday, but somehow I always find a way to get it back.  I know I am not the only person out there who has ever felt like they were forgotten about.  In the big scheme of life, when I see people doing all the wonderful things, going on vacations, sending their kids off to college, buying new homes, remodeling old homes, meanwhile I am wondering how I am going to get my car inspected or find a way to just put gas in it.  I wonder where it was that I fell short and where did I go wrong?  Is it right to just be humiliated into doing things that other people dictate to you to do.  Is it right to feel like less of a person when someone calls and threatens you about a bill you just can't pay right now?  Is it weak to say I am too depressed and overwhelmed to go out and start all over again or that I am just so tired of going years and years with no sleep worrying about the future of my son, or worrying that he will wake up in the middle of the night and do something that can't be undone while I am selfishly sleeping?  These are the thoughts that I have been pondering for months now.  I guess when I was working, I didn't have time to really think about them, but they were still there festering under the surface.
Putting that all aside , I want to say that I experienced a Christmas miracle and this is one thing that I will never ever take for granted.  I innocently posted about anyone having an old microwave that we could use so that Zach does not try to make his own snacks on the stove and a tragedy ensues.  I really was not prepared for what took place afterward, and I am humbled and grateful and just a puddle of mush today. ( Meanwhile I gotta get myself together because I am working coat check tonight down at the restaurant to earn a few extra bucks)  An old ex head start parent offered me hers, and within 10 minutes Tammy was knocking on my door with a brand new microwave courteous of her and my cousin Gail.  My phone was ringing off the hook from Tim and Maria, offers were coming in from everywhere and I just can't believe how loved and appreciated we really are, and how many people DO care.  Cousin Davey and his wife Nichole left a beautiful gift on our front porch this am and I am just speechless by every ones words, gestures, thoughts, prayers and kindness.  I am not leaving anyone out, I appreciate everyone of you.  You all gave me something back today, a piece of me that I thought was lost, buried, or never was there in the first place.  It's back, and I am back.  This is no small matter and I am moved and motivated to pay it forward myself and count my blessings as I have asked all of you to do in my many blog entries and posts.  I can go on and on here, but the point is made.  This is what Christmas is about.  I love you all, my dear friends,my family and everyone out there who is in the same boat.  It is amazing what a difference a day can make and just when you think you have been forgotten about a group of angels show up to remind you that you haven't been.

I need to go get ready for work, there is not enough visine to make me look presentatble today ,but I dont care.  Thank you all so very
much.  And again Merry Christmas Love Ron. Lesa and Zachary.

Special needs parents

Yesterday was Zachary's Christmas Program at school.  For anyone who has ever attended a program put on by special needs , it is the sweetest most heart warming  experience you could ever witness, They try so hard despite all of their fears and complications.  It is funny as hell when some of them get so excited they literally jump out of their skin when they see their parents, or when a little boy stands up and reads the night before Christmas and then bursts into tears because he is so overstimulated by the applause.  Some of the kids really ham it up, while others act like they are too cool for school ( that would be my Zach).  It is just something that words can't describe and the emotions that you as a parent feel watching these kids try so hard are so overwhelming that it is hard to put into words. Every parent there is rooting for every child. It is as though for one  brief moment we all become one family cheering for "our" kids and taking pride in watching each and every child's accomplishment as if they were our very own.

As I looked around the room and saw the tired faces of all of these parents/grandparents/caretakers sitting there with their cameras and video recorders, I couldn't help but feel an instant camaraderie with them.  You can just look at each other and there is an instant bond that is unspoken yet says so much.  I know for a fact without even formally meeting them, that they have spent many nights awake worrying themselves sick about the future of their child.  I can look them in the eyes and know exactly how they felt the day that they realized that their child was not like other children and that life as they once knew it was never going to be the same.  Just a simple handshake with one of these parents can tell a whole story, a story that I know, a story that we all know.  A story about an unconditional love that only gets stronger as the years go by.  There is no competition with this group of individuals.  You will not observe a click of parents who think their child is better than all the others, or who is mad because their child didn't get as much stage time as another.  You will not find any parents judging what a child is wearing, because we all know that certain children cannot bear to wear certain fabrics.  There is such an absence of ego, and such a unity of spirit.  It is really extraordinary.  I can sit there and know without a doubt that if my child tried to dart out of the auditorium, that there would be a group of fathers who would instinctively run over and make sure that didn't happen.  I know for a fact that if there was a child on stage who was upset and throwing a fit, not one parent in that room would feel annoyed or that their child was slighted, or that the performance was ruined. We have all been there, we share a bond,, it is inevitable.   There is an overwhelming sense of compassion and gratitude among this group of individuals.  People are courteous, they move out of your way so that you can see your child when it is their turn, they bring plenty of tissues and pass them around.  They clap and applaud for each and every child, they laugh with the kids and cry with the other parents.  There is  mutual respect, admiration,

and empathy.  Parents of special needs children can become lifelong friends in an instant.  Something comes from deep inside that can make you just meet someone, even if it is on the Internet ( Colleen, Janice, Pam, Dawn, Kelly ) and just love them and their child immediately and go out of your way to try to help them in any way you could.  A part of you that tells a complete stranger to call you anytime day or night if they need a shoulder to cry on, or advice or just someone to bitch to about how unfair life can be at times.  This is no small matter, this is one of the perks of having a child with special needs.  There is a whole community of strangers out there who love and care about you and your child whereas a friendship that didn't include this common ground may take years to blossom, we can skip through all the bullshit, and get to the heart of the matter in seconds flat and have complete faith and trust in each other.   For this I am grateful.  We need each other and we pull strength from each other.  We are the experts and we consult with each other.  I looked again around that room filled with tired, weary,overworked but hopeful caring people who for one hour put all of their cares and worries aside  and I silently blessed every one of them, because they are my friends, my family and my fellow soldiers who share a common bond and an important mission that has been entrusted to us.  May we continue to rise to the challenge.

Ronnie

I don't feel like I can blog one more day without telling everyone about my wonderful other half Ronnie.  We started dating when Zach turned five years old and although we knew each other a few years prior to this and were definitely VERY FOND  of each other the timing was not right.  So we went on our first official date on Ron's 30th birthday where we met for drinks along with some other friends.  Ronnie was aware that I had a child and I swear I told him that night that he had been diagnosed with autism, Ron doesn't remember me saying anything.  The next night after our first date Ronnie came over and was excited to meet Zach. Zachy just took to him right away.  I will never forget it he had just had a bath and had his little feety pajamas on.  He looked so sweet and lovable and Ronnie was goofing around with him and I was thrilled that they were hitting it off.  I had separated from Zach's Dad when Zach was two and although I had a few dates here and there, I was basically alone for much of that time.  I feared most of the guys were intimidated by Zach's condition and that was just as well because we were a package deal.  With Ron it seemed to be different.  After they played around for a little bit I put Zach to bed and we were talking and Ron came right out and said "what's different about him, he played with me, but he didn't say one word, does he have hearing problems or something?"  My heart started to pound because I swore I told him he had autism the other night.  Ron claimed I didn't or at least he didn't hear me, so then he started asking questions about him, not as an intimidated stranger but as someone who was truly interested.  There was no judgement or fear only genuine curiosity. 

So our relationship progressed very quickly and naturally as well as Ronnie's relationship with Zach.  Zach would wait for Ronnie to come over every night for his hour or so of horse play and I saw a real bond forming between them.  It made me so happy that someone else was able to see Zach for the wonderful child he is and not just focus on his autism.

Then enters Ronnie's friends, a bunch of guys many of who had reputations of tough guys not to be messed with.  Well Zach turned these tough guys into silly clowns who would stand on their heads and do anything to get a laugh from him.  Their total acceptance of Zach and their respect toward me was so evident.  Many of them including Ron would say "God bless the person who ever disrespects or picks on this kid" He was treated as their little mascot. Here were all these guys with tough reputations, covered in tattoos and they were so enamoured with little Zach, letting him jump all over them, roughhousing with him and genuinely interested and concerned with his progress.  Many were trying to get him to talk in silly ways and I never felt so safe or so loved in my entire life.  My relationship with Ronnie was growing stronger every day and we were definitely a threesome, me Zach and Ronnie.  Ronnie gave up his freedom, his finances, his sleep and his entire life before he knew us to spend time with us.  He was becoming Zach's father in every way and I couldn't feel more proud or more protected.  One funny story I can remember was one morning my father had come up to visit with Zach and I, I guess we had slept in and the doors were locked and my dad was lurking around the house, looking in the windows to see if we were up.  Well one of Ron's friends who happened to be nearby at the time noticed this and got enraged by this "peeping Tom" and went right over to him and asked him what the hell he thought he was doing lurking around my house.  My father was a bit disturbed ( but I think he was silently happy that men out of the blue were looking out for us) He explained he was my father and the guy was embarrassed and apologized but I thought it was the most heart warming story.  Our time together was not always marked by fun and games, there were some serious issues with the school system, illnesses, surgery, a move to our new home and PUBERTY which would have challenged the saintliest of men.  Through it all Ron was right there beside us all the way.  He is my boyfriend and my best friend.  He is practically my husband and he is without a doubt Zach's real father.  Ron's family embraced us as if we were part of the family right from the start.  Ron has gone so far as to get tattoos marking his commitment to us.  He has my name on his chest, Zach's initial on his arm, and the autism ribbon on his forearm

   

         There is so much more I can say but I think the pictures and my synopsis of our relationship says it all, so on the eve of Zach's 18th Birthday, I wanted to pay homage to Ron, and say we did it, we made it, and here comes a new chapter of our lives that we will take on together.

If Zach had words I know he would say Thank you for being my advocate, my protector, my buddy, my Dad and my biggest supporter. 

and I ask all of you would you feel afraid if you had THIS protecting you and your child at night?

We are very lucky, and I wanted to take this time to thank him, my best friend for providing us with the definition of family.  We Love you.

Love Lesa and Zachary

A phone call I wasn't expecting

This morning I am sitting here going through my emails and trying to figure out how to post separate pictures on each of my different blogs and the phone begins to ring and I look to see that it is Zach's school.  I automatically think that he is sick or something, so I answer the call expecting to need to get up and get myself together and go pick him up.  As a side note, when I was working, I got the calls all the time, that he was sick and needed to be picked up.  Since I have stopped working, I have YET to get a call like that.  I think the reason is that I get to keep him home now, when it is questionable whether he doesn't feel good.  Since he doesn't talk and is very routine regimented, he makes an attempt every morning to get up and go.  When I was a working mom and I felt Zach needed to stay home it was such an ordeal.  I would have to make sure he really didn't feel well. then I would have to call my parents to see if they were available to watch him, if I couldn't reach them, I would have to make the decision, if I were keeping him home, I had to call my boss, the school and the driver to cancel. I would then have to make sure that if I had any appointments, I would have to call a co-worker to ask them to find the numbers and call the appointments etc etc, it was a very stressful thing.  I know all working moms have this dilemma  when their children are sick, but as I have mentioned before, usually there comes a time when a child is old enough to stay home alone and take care of themselves. I never had that option, so I was probably guilty of sending him to school sometimes when he should have stayed home.  Anyway.... ( wow did I get off topic) I answer the call and it was from the director of education from Zach's school.  For those of you that don't know, Zach goes to a private school for Autistic and Emotional Support funded by his home district which is Wyoming Valley West.  She informed me that the Wyoming Valley West district called her and asked her to call me to see if I wanted him to participate with the highs school seniors and receive a diploma at the 2012 June graduating ceremony.  I cannot explain why but it hit me like a punch in the stomach.  I know by law they had to offer me that opportunity for him, but the thought of him in the middle of a huge stadium with hundreds of kids he does not know, getting a diploma from a school he has never attended just seemed so ridiculous and it hit me right where it hurts in the heart.  I hung up the phone and started to cry my eyes out.  Usually I do very well and I have accepted and embraced Zach's autism, but when milestones such as birthdays and senior year come up, I just can't help but wonder who he might have been.  Would he have been a good student, a good driver?  Would he have been popular and had a girlfriend?  I wonder what kind of job he would have and where his interests would take him as far as picking a college and a major.  It was so unexpected and so jarring. Sometimes I am innocently sitting here doing my thing and out of the blue BAM!  I get hit with a realization that this is not a dream and that this is my life.  As much as I love it and him, there will always be that little part of me who wonders who he would have been.  I guess that's normal.  It just set the stage and I can see this becoming a very emotional day.  I had big plans to clean the bathroom today, but I think I am going to just sit this one out. The dust bunnies in the bathroom will certainly be there tomorrow.  The old me would have plunged into the bathroom and used it as an excuse to distract myself from the heartache I just endured.  The new me is going to sit here and allow all of the feelings to come up in order to come out.  I am grateful for my incredible son, he is awesome and the love of my life, but WOW  that phone call really threw me for a loop.