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