The Miracle Lottery

Do you ever wish it was your turn to win the lottery?  Do you think about what you might do with the winnings?  The fantasizing thoughts of the glorious opportunity to be without debt, to have the ability to do for others, take a vacation, get a new vehicle and go on a shopping spree.  Oh what fun you could have….

Alyssa was born almost two months early.  She weighed 3 pounds, 13 ounces.  She was precious, yet so small.  Her fingers were tiny and delicate.  Her expressions were worried.  In the first day, Alyssa’s right lung collapsed, requiring a chest tube to be surgically placed into her lung for re-inflation.  She was not doing well.  She was on oxygen, in an incubator with warming lights to help her maintain her temperature.  She was so fragile.  She couldn’t even be held because it would take more energy than she had to give.  She was fed intravenously at first, and then through a tube.  She was not able to maintain her weight.  She was on the very best ventilators available.  Frighteningly, Alyssa’s health continued to deteriorate. 

A couple of weeks into Alyssa’s life, the doctors found Alyssa had Pulmonary Interstitial Emphysema, PIE.  This lung issue happens most often in premature babies.  The best I can describe it, as it was described to me, the lungs develop air pockets outside the normal chamber.  The doctors explained, the right lung collapsing, had “squished” the air pockets out of the right lung.  This was a good thing.  However, the left lung was continuing to expand.  The doctors tried many of the more common methods of treating this condition, but were unsuccessful.  It was time to try some different techniques.  The team of doctors felt, it would be best, to place Alyssa in an induced coma, cut off oxygen supply to the left lung and ultimately collapse the lung. 

The doctors took x-rays regularly to see if the method was working.  After about a week, they came to me to discuss more options.  The primary doctor explained, the air pockets were still present and there was a chance Alyssa would need to have her left lung removed.  He suggested, I leave the hospital and take a breather, so they would have an opportunity to meet with the surgeon and review all the x-rays, discuss the options and ultimately have a plan to share with me later. 

Reluctantly, I left the hospital.  As I began to drive away, I completely lost it.  My heart ached.  It was nearing Christmas; “How could this be?” I cried to God.  I was full of frustration and overwhelmed by sadness.  I went to a cousin’s house for the afternoon.  She reassured me over and over, not to worry.  She said, “Babies are much more resilient, than we are”.  She encouraged me to believe, Alyssa would be okay. 

When I returned to the hospital, I was immediately approached by the surgeon.  She had tears in her eyes and she said to me, “your baby is a miracle”.  I looked at her and only seeing her tears, thought my baby had died.  My heart stopped beating, my throat was so tight, I could hardly breathe, and my knees were locked.  She repeated, “Your baby is a miracle” and added “the PIE is gone, all gone!!!”  I couldn’t believe what I was hearing.  As I wiped the never ending tears from my eyes, she assured me, Alyssa would be going home soon.  And, Alyssa did.

For me, I won the lottery, but not the financial lottery, I won the miracle lottery.  When the surgeon says “it’s a miracle”, you best know, you won the jackpot.  If you only have one chance to win, I can assure you; this is the ticket you would want to be holding.  I am incredibly fortunate.  Thank you God!  Thank you doctors!  Thank you, thank you, and thank you!!!!!!!!  It was the best lottery winning in history.  Instead of a vacation, we were able to go home.  Instead of a debt free life, we had racked up over a $400,000 hospital tab, mostly covered by insurance.  Instead of shopping spree or car or any other silly material “things”, I got to hold my daughter, look into her eyes and know, she was going to be okay; she could look back at me and know it too.  It was the best day ever!  I believe in miracles.  I am so blessed to have had the opportunity to see a miracle happen, up close, completely real and beautiful.  Amazing! 

Thank you for reading and sharing my writings with others.  Have a great week.  Angie 

Visible Walls

This past Sunday, I watched a Joel Osteen live church service.  He spoke of what he called “invisible walls”.  Most of his sermon was about accepting one another for who we are on the inside, not from what we may look like or who we are on the outside.  He encouraged us to recognize diversity, as good and healthy.  We shouldn’t think of ourselves as “exclusive”, instead, inclusive, all together in one universe.    

I understand Joel’s message all too well, not because I live a life of indifference towards others; instead, I have a daughter who has differences and she experiences the walls of indifference.  The walls we build are quite “visible”, from the way I see it.  Too often the walls are built out of fear or dislike.  We allow the walls to grow big and tall to protect us from all the things we don’t understand or what we clearly object to.   

The most obvious “visible wall” example I can share with you happened in Alyssa’s pre-school days.  A beautiful little girl came running up to me and said “I am having a birthday party this weekend.”  I said, “you are, how exciting!”  She gasped, covered her mouth and said, “oops, I wasn’t supposed to tell you”.  My heart plummeted into despair.  The classroom etiquette was this; if you invite one student from the class, all students “should” be invited.  This child was unfairly put in the middle of this situation.  She accidently divulged the news of her celebration, which was clearly a celebration, which would not include Alyssa.  I realize, the little girl was supposed to keep this a secret and was probably instructed to do so by her parent(s).  It makes me sad, for the little girl, who had to learn, at such a young age, how to build a wall because her classmate was different from her.  I fear our children grow up and those early walls become huge dams, permanent obstacles.  How can we come together and stop looking at the outside and embrace the qualities on the inside? 

If you look at Alyssa on the inside, (not at the obvious and apparent delays in her development on the outside) you will see Alyssa’s most valuable assets.  Her heart is beating strong and she is full of love.  She can give you a hug, which will melt your heart. Alyssa is a sweet and silly little girl, much like other children.  She has a disability, but she is so much more than that too!  At times, she will repeat herself, over and over, until I am able to say what she is “trying” to say.  She wants to communicate, yet her mind gets in the way, causing her difficulty.  Should we look at this difficulty and build a wall against it, or should we break the wall down and join together to help her?  Who would she be without those individuals who embrace her?  What would her future hold without relationships? 

Unfortunately, this is not the first time Alyssa has been excluded from something.  It just happens to be one of the times, we found out.  I feel like, if I jump into the deepest part of my soul, I can see how someone wouldn’t want to invite Alyssa to their celebration because of their fears.  I will even say, those fears may come out of someone thinking there is a chance, I may drop Alyssa off at a party and leave her.  It makes me laugh because if I manifest these particular thoughts, I can almost envision her as a Godzilla tearing through the inviting family’s home causing mayhem and destruction.  The truth is this; I would never drop her off.  I would go with her and help her celebrate her friend’s special day!  I would pray there would be no mayhem!!!

Today, I hope you will join me, by embracing differences.  If we all take the time to break down the walls, there is a chance, we will gain from this on our insides.  What we have blocked out and tried to steer clear from may actually be the best thing that ever happened to us.  How would we ever know, unless we take that chance? 

I need to follow this story up with some thanks.  First and foremost, I would like to thank all the families who brought their kids to Alyssa’s first birthday party, which happened this past December, when Alyssa turned 7.  I am incredibly thankful Alyssa has developed some friendships.  I would like to thank every parent who has expressed an open heart towards my Alyssa and I admire what you are teaching your children.  Even though my daughter has differences, she has something very special too.  Thank you, for allowing “different”, to be “okay”. 

The children who Alyssa has formed relationships with and the friends who continue to support us are absolutely a blessing!!  You have brought encouragement to us and we couldn’t do it without you!! XO
 

Thank you for reading and have a great week.  Angie

Alyssa Buzz

In 1998, Lindsay Lohan was featured in The Parent Trap.  I loved her (back then).  She was beautiful, sweet, innocent, fun and all the things you would want to see in a young aspiring actress.  Over the past couple of years, Lindsay went from admired to shameful.  Sad really!  When I saw the latest allegation, this week, of Lindsay Lohan stealing a necklace, I was disgusted.  What has happened to this girl?  She has (or had) it all.  She has fame, beauty, talent and so much more.  Why would someone take their fame and throw it all away to DUI’s and theft?  Perplexing to me, you can be given a gift, a talent, and choose not to use the gift, the way it was intended.

I feel strongly, if people have fame, talent and are in the limelight in front of our children, they should have no easy ride; they should have to follow the same rules as everyone else.  I almost wish they had stricter rules.  Bottom line, they need to know, they are impacting our kids and we need them to set the right example within their fame, at all times.  It’s okay if you make a mistake, but know the consequence.  I am not picking on Lohan.  I feel for her.  I see so much in her, she must not see in herself anymore.  It’s sad to watch a person with such self destructive behavior. 

What if you have a gift and have no way to use it?  I look at my Alyssa.  She is so beautiful.  TO ME!!  I realize, I am the victim of a bias viewpoint.  I am her mom.  HA!   In my defense, I look at her smile and it melts me.  The last couple of years, she has really come into herself.  I think Alyssa could be a model.  Many others have said the same.  Maybe I am not imagining.  HA 

Then, I come to realize, Alyssa has the potential to not have the same chances in life as other children.  I feel demolished!  I dream of Alyssa having a “place” in the future, a real purpose.  What if something happens to me?  In many cases, when the primary care person is no longer available, for a child with significant needs, that child will end up in a group home of sorts.  I can’t have that!  I wonder what her future will look like.  The more Alyssa learns, the more independent she becomes, the more opportunity she will have.  What are the possibilities?  I hope, I worry, I pray.  Is there a future for Alyssa?

A favor to ask of you…. I would like to ask everyone to share my website with one another.  I would like to ask for you to envision my Alyssa having a future and success!  Believe in her!  Pass her on to everyone!  Alyssa has so much to offer the world.  With all of us joining together and creating an “Alyssa buzz”, she may get a chance.  A chance to show the world what unconditional love looks like.  If you believe Alyssa can have success, please share her beautiful face.  This is what fame should look like……happy, healthy, sweet, beautiful, full of love and compassion for others; all of that, plus a natural goodness.  I believe, every time a person shares Alyssa with another, Alyssa gains a chance in life.  So, I ask you to help me.  Let’s create the “Alyssa buzz” and open the door of opportunity for her and at the least, show her how much we BELIEVE in her capability, her future!

Thank you for reading.  I will continue to publish on Wednesdays.  Have a great day!!  Angie

www.thenewfaceofautism.com

Hard Balance

I love the show “Extreme Makeover; Home Edition”.  Great show!  I love how a community comes together to make a difference.  I also love the show “What would you do?”  For me, I love seeing people do what’s right.  “The Biggest Loser” is inspiring, when you can see those people changing their lives significantly, for the better.  Soon, there will be a new show out called “Secret Millionaire”.  Looks like another winner!  The common thread, I love to watch good happen. 

Someone dear to me has always said, “a person can’t know what it’s like to feel good, unless they have experienced what bad feels like”.  I believe this is true.  I believe you will never truly know what good is, how it feels and appreciate it, without having a deep and intimate understanding of bad or hard.  I also believe, we cannot see, until our blindness is unmasked by all the things we allow to get in the way of our vision. 

Honestly, I am tired of hard.  I don’t understand it.  I am hopeful and wish for lighter days.  It’s not so much, I am whining over spilled milk; I am run down from 7 years of challenge.  See, this is the hardest thing I have ever dealt with in my life, from the day I had Alyssa and her lung collapsed, to this current day, where she has frustrations linked to her difficulty with expressing her wants and needs.  And, there is so much in between the “then and now”.  How did 7 years come and go so quickly, when some days felt so long?

Then, I realize, I need to find the good in all situations, it’s my saving grace.  I hold each and every accomplishment, my Alyssa makes, close to my heart.  It’s what keeps my heart beating.  There really is no sense in allowing myself to get down over stuff that isn’t really “that important” anyhow.  Reality check, I see the news.  I can make a list of things to appreciate after watching just 10 minutes of CNN (or 1 minute of Albuquerque news - haha).  

I am exactly the person who has received life’s lessons in balance; the balance of good and bad; sight and blindness; sadness and happiness; rich and poor, etc.  I have been blessed, plain and simple, with BOTH understandings.  I would prefer to have all the better halves of those life lessons, but for some reason, it doesn’t work that way. 

I do have to say, Alyssa spoils me with love and affection; it makes me feel rich in other ways.  I am thankful for what I have and feel I am fortunate to not have it harder.  At the end of the day, all my stress, anxiety, tiredness, sadness and hardship will turn into something good, if I let it.   

Thank you for reading.  Have a great day!  Angie

But wait, there's more!

Just a quick addition to the post of progress yesterday….

Last night, Alyssa’s dad pulled a word doc up and typed her name.  We invited Alyssa to come see it.  As soon as she was in view of the doc, she said, “Alyssa”.  Then, she sat down and typed Alyssa, saying each letter as she typed it.  She concluded by repeating her name.  So awesome! 

Have a great day!

abcgefghijklmopqrrrstuvwwwxyz

Before getting going here, I would like to thank all of you for your feedback, encouragement and suggestions!  I want to share a couple fun stories first.  Then, I have a story, which I hope will excite and inspire you, as it did me.  I will save the best for last. 

My first story goes back to when Alyssa was 1 ½ years old.  I went to JC Penney to do a little shopping.  Mostly, this shopping was for Alyssa.  I pushed the stroller and walked through the store, carefully going up and down the isles and around each rack.  When I was finished, I went to the register, paid and went directly to the vehicle with the intention to leave.  I unloaded my bag, then proceeded with Alyssa to her side of the vehicle.  As I leaned over to pull her from the stroller, I realized, Alyssa had a slew of clothes stashed in and around her.  OH MY GOSH!!!  She's a thief!  I rushed back into the store.  I went to the closest cashier and said “I need to return these clothes, my daughter stashed them into her stroller”.  The lady looked straight at me and said “would you like to exchange them or have a credit?”  I exclaimed, “No, no, I am not returning them for exchange, I am returning them because they are not mine”.  She looked so confused.  Then, she says, “so, would you like a credit?”  I slowed myself down and carefully explained the entire situation.  I never realized how hard it could be to do the honorable thing.  After that point, it was very clear, Alyssa needed some real attending to at the mall.  Lucky I didn’t get arrested.  Funny, she does not like to step foot in a store these days…. Maybe it’s because she didn’t get away with shop lifting.

This next story happened on New Years Eve; Alyssa was barely 3 years old.  We went to sushi, for an early dinner.  This particular restaurant is busy from the time they open their doors, until closing.  They don’t waste space with seating.  Because we had a child, they considered us to be more like 2, instead of 3 people and sat us at a very small table, squished amongst other small tables.  Alyssa hadn’t had sushi before, this was all new territory.  We thought it would be best to start her with some tempura veggies.  We ordered a sushi roll for ourselves.  The veggies came and Alyssa immediately pushed them away.  She went right for the sushi and LOVED it!  When the plate was clear, Alyssa looked behind her, turned around and helped herself to the sushi roll on the table behind us.  She had a graceful ease about her.  It was embarrassing and adorable, at the same time.  Of course, there was no hesitation to replace the roll for the other diners.  Yet, we realized quickly, it was time to get out of there.  I knew sushi was expensive, but Alyssa’s appetite, along with her desire to share with neighborly diners, was certainly going to break the bank.    

Yesterday, Alyssa did the most AMAZING and awesome thing.  When we got home from school, I unloaded her things, while she ran about and emptied her basket of toys into the middle of the room seeking what she wanted to play with.  Since, she seemed fairly occupied; I decided to check my email.  I started to reply to a friend, when I realized, Alyssa needed to go to the bathroom.  I was too late and disaster struck.  I raced her upstairs for a bath, forgetting about the email I was replying to.  After her bath, I proceeded to “chore-land” with the intention to continue working on the never-ending feat, called laundry.  I transferred everything, started another load and went to fold and put the dry ones away.  As this was going on, Alyssa was delightfully jumping on the bed.  When she was done, she took off for downstairs.  I finished making her bed, and then followed.  When I got about half way down the stairs, I could hear Alyssa saying the alphabet.  As I got closer, I could hear her plunking the keys on the computer.  I slowly walked over, working my way behind her, to see what was happening.  This is what she typed….

Abcgefghijklmopqrrrstuvwwwxyz

My email was still open and she had simply sat down and started typing, while saying her letters aloud.  I was so excited, my eyes were filled with tears, my heart with joy.  Why all the fuss?  Read on….

A while back, a friend of mine sent me the most beautiful You Tube video.  This video is of another young girl who has Autism.  Her name is Carly.  After watching the “Carly video", I couldn’t get my hands on a computer fast enough for Alyssa.  Not only did I get her a computer, this computer has touch screen capabilities, since Alyssa has not mastered the concept of the mouse. Over the past couple of years, the school has incorporated the use of computers into Alyssa’s technology plan, to assist her with learning activities.  We continue to see Alyssa take interest in the computer and she has demonstrated learning, as well.  Carly's story has inspired me and been part of my hope with Alyssa.  I look at my beautiful young daughter and I pray, she too, will be able to express herself..  And, yesterday, just yesterday, I got to see the computer come to life, with Alyssa behind it, no help, just her!

I have included the link to the “Carly” video for your viewing pleasure.  Have a great day!!!  Angie

p.s. I originally planned to write about something else.  Yesterday's event changed my plan.  :)

Shattered Expectations

If Alyssa only knew, when I was pregnant I set these expectations to what motherhood would be for me.  In my mind, I had all these great ideas.  This was going to be perfect.  I had it all planned out.  We would start in play groups. Later, we were going to have sleepovers, birthday parties, after school sports and activities.  I would be soccer mom.  I would have the sticker on the back of my vehicle that reads “my student is on honor roll”.  This was all fantastic.  And, I didn’t stop there.  I went as far as dreaming about her fairytale wedding too.  I am not sure if all moms do this, but I did.  Now, I am sad I had those thoughts, maybe even ashamed.  I am sad I allowed myself to think perfect would be perfect.  What if Alyssa thought, those things are what I really wanted and that she somehow let me down?  What if this amazing young girl thought nobody believed she could learn because she's unable to give us the responses we are looking for?  What if she thought her Autism was too hard for her friends, family, educators and society to deal with?  What if she saw the “my child has Autism” sticker on the back of my car, replacing what would have been the honor roll one?

It all makes me sick.  Here I was, so determined, I never thought of the possibility of having a child with Autism.  I never thought I would be spending my days advocating for her education; and nights sleepless in worry.  I was selfish and a person who needed to gain some lessons in life.  What was really important?  Well, back then, let me just say, I didn’t even know what Autism was.  I don’t remember seeing it in the tabloids.  Nobody from my family or friend network ever talked about it or had children affected by it.  In fact, my friends and family mostly discussed the “really hard stuff’, like dealing with unruly teenagers, work issues, financial difficulty, car troubles, burnt toast, what to wear, etc.…  I am sorry, Autism didn’t cross my mind and I really didn’t know what it was. 

I used to set expectations and be devastated if what I expected didn’t happen.  This thinking never considered how others might be affected. It was selfish.  It was all about me and what I thought and wanted.  I believe Alyssa has saved me from me.  She is my world and she is in no way anything less than exactly what I want and need!!!  She brings more joy to my life, than I ever had before.  She gives me a reason to get out of bed each day.  She challenges me too!  And, love?  I didn’t even know what the word meant.  Alyssa has taught me so much. 

I would like to suggest, we shatter our expectations and aspire to something bigger, better, greater, filled with love, hope, faith, and integrity.  I would like to encourage the world to embrace what is different and find ways to allow there to be lessons from those differences.  I would like to encourage us all to let go of our expectations, allowing us to be more flexible.  If we aspire to great deeds, we will have a better chance of accomplishing them.  Aspiration is a strong desire to achieve something great.  At this point in my life, I aspire to be a better person and a better mom.

I have to tell you....  Today, Alyssa is skiing.  She is having so much fun.  She is excited to ski down, just so she can get back on the chair lift.  Her smiles says, "let's do it again and again".  How wonderful.  :)

Thank you for reading my blog and have a great day!!  Angie