The End of Fantasy Football

Okay, so you maybe wondering what does my blog have to do with fantasy football.  Well, its simple, its the end of the season.  Christmas is over, now fantasy football and in two days it will be 2013.  Things are changing, and there is a time in every season and now those seasons have ended.  

As I look back at 2012, I know that God has his grace on Marissa and on our family.  While we faced a lot of adversity, we are stronger now then when we were when 2012 started.  I was able to reconnect with friends that I have not spoken to or seen in over 20 and some 30 years.  Those friendships and relationships have helped to sustain me though some of the rough times.  I am so grateful to have them back in my life.  

I know that 2013, is going to bring the same type of adversity and challenges as 2012.  I am prepared for the fight and I know that this time next year, I will be a little stronger because of it.   We still have the appeal for Marissa's waiver ahead of us.  I can only imagine how big of a fight this is going to be.  Marissa has some upcoming UVA appointments that I know are only going to bring additional heartache and struggles for her.  I just thank God every day that her season has not ended.  I know that in a lot of ways we are living on borrowed time.

As I end this blog, I am going to share a story with you about Marissa.  I have shared it once before but I think that it is more pertinent then ever to share.  Every time we go to the beach, Marissa collects sea shells.  Not the whole pretty ones, she disregards those, but rather she picks up the ones that every one else neglects to pick up the broken shells.  In the most broken things, she finds beauty.  Marissa maybe broken but she exemplifies unselfishness, honesty and beauty.  She's a true hero.  I hope that each of you can find beauty in things that are broken in your life.  In each disappointment and in each joy, a lesson is learned.  One of my dear friends gave me a book for Christmas titled, "My Beautiful Broken Shell" by Carol Adams.  One of the things that touched me most was this paragraph in the book, 

"Please slow me down....that I may always see the extraordinary in the ordinary.  That I may always wonder at the shell in the sand... the dawn of a new day.. the beauty of a flower... the blessing of a friend... the love of a child.  In my brokenness, may I never take life so seriously that I forget to laugh along the way.  May I always take the time to watch a kite dance in the sky... to sing...to pick daisies.. to love... to take risks... to believe in my dreams".  

I have plenty of broken shells.  Marissa will never let me leave me at the beach.  (Trust me I've tried).  So if you'd like one of her shells, just let me know.  I know she would be glad to share one with you.  

So as a new season begins, I can't even imagine what is in store for us in 2013.  I can only pray that God will continue to shed His grace and blessings on us as well as each of you who read my blog.   Make sure that you take time each day to enjoy this short life we are given.  

Happy New Year!

"Somethings just can't be fixed, Amy"

Over the past few months, we have been taking Marissa back and forth to the doctor for constipation and colon back up issues.  Marissa has been battling this for her entire life but it has increasingly gotten worse and worse.   Last October, Marissa had spinal cord surgery in hopes that it would fix the communication between her brain and her bladder and bowel.  It was not successful.  Last January, we learned how to catheterize her and now we have to learn how to manage her bowels.  Yesterday, the doctor looked at me and said, "her ability to learn how to go on her own, just isn't there.  Somethings just can't be fixed, Amy".

Anyone that knows me, knows that I'm a fighter and a fixer.  Being told that I can't fix something, especially with my daughter, just brought a feeling of hopelessness to me.  I left feeling what do I do now.  Everything I envisioned her doing in the future was her in pull-ups.  It is heart breaking.

Today, I walked around feeling sorry for myself.  I tried to put on a good front, but I'm pretty sure I failed.  Then God sent a couple of reminders.  The first reminder came from my hair stylist.  She reminded me that Marissa is a very special little girl and that I have no idea how many people lives she has touched.  The second came from her speech therapist from school that retired last year that I ran into at the grocery store.  She reminded me that Marissa has defied the odds so far and that she will continue to surprise us.  She's a miracle.  

Tomorrow, will mark the one year anniversary of the passing of my buddy, Darnell.  He was one of my kids and had severe Autism and a seizure disorder.  I miss him everyday.  I do my work differently because of him.  I know that his last bit of time on this earth was good.  It was better than good, it was great.  He was the sweetest, kindest kid, I had ever met.  He worked hard the last few weeks of his life to accomplish things we all wanted him to do.  He had so much more to give, but it was his time and he left this earth, singing and dancing away.   I know that he is looking down on me and saying, "I can't wait for you to see me Ms. Amy!".

So tonight, when I got home, I hugged my baby girl.  I told her that I loved her more than life itself and that I am sorry she has to go through all of this.  She looked at me and said, "I love you too, can we watch Wheel of Fortune?".  In that moment, I laughed because she doesn't know what she's going through, this is her life.  She knows no different.  The same as Darnell, knew no different.  I loved Darnell and I love my Marissa.  I know that somethings just can't be fixed on earth, but I know that they can be fixed in Heaven.

The Meaning of Family

I'm going to diverge little bit from my normal in this blog.    Lately, I have been encountering a lot from people about family.  I think that the holidays bring out the ups and downs of family and family life.  I am one who is a true believer that your family is who you make it.  You can have your "chosen" family.  Being blood related, does not make family.  Family are those people that you can count on and look up to for guidance and support.  They are the people that always have your back- no matter what and regardless of how good or bad your situation maybe at any given time.

When I was 14 years old, I made the decision that I did not want to maintain contact with my biological father.  It is not until I began doing social work that I realized that he suffered from some form of mental illness.  I'm not licensed so I won't diagnosis him but I have my conclusion.  In separating from him, I made the decision to separate from my entire paternal side of my family.  I have aunts, uncles and cousins- but they are not my family- they are titles of estranged individuals.  I haven't had any contact with them since my dad died.  This is the way I intend to keep it.

Being estranged from him, did bring up some issues when Marissa was born.   I had to contact him to find out about our "family" history.  It didn't help, he didn't help.  But, I realized that was the only thing he had ever tried to help me with in my life.  This is the only time I really needed him and he couldn't pull through for me.

As Christmas approaches, I understand the value of my "chosen" family.   There is no way that we could raise Marissa without the support and encouragement of those people who are not blood but have become my family.   To you, I will always be eternally grateful.

Balloons to Heaven

Tomorrow will mark the one year anniversary of the passing of a very special little girl, Ainsley.  Ainsley was diagnosed with a 1p36 micro deletion chromosome disorder after she was born.  Another very rare chromosome disorder.   She was an amazing fighter or overcame many obstacles before she finally went to heaven and got her wings.

Before Ainsley was born, I didn't know her mother or father.  It wasn't until they began working through the maze of services that I met them.  I remember the first time I spoke to her mother, Crystal, on the phone, my heart just ached for hers.  I was optimistic and tried to encourage her the best I could.  I remember meeting her Crystal for the first time and seeing sweet Ainsley in the PICU at UVA.  I admired Ainsley's strength and her willingness to survive.   She was simply amazing.  It took me back to the memories of Marissa laying in the same crib with all the wires.  I never thought we'd be able to leave, but I knew that if Marissa could survive the odds than so could Ainsley.

 On October 10, 2011, we were at UVA for Marissa's pre-surgery appointment for her spinal cord surgery that was on October 21, 2011.   Ainsley was in the PICU and we had planned to go see her and her parents.  I remember Steve's face when he came into the room and said  that Ainsley had taken a turn for the worse.  My heart sank.  It wasn't until the next day that she had passed.   Ainsley's passing was not in vane.  She brought change to a hospital that no one else could and is making a difference to this day.  Because of Ainsley, children will be saved and an old practice has now become new.

Crystal and I now share a very special relationship.  I admire her in so many ways.   She is one of the strongest women and mothers I know.  I am honored to be her friend and honored to have loved her daughter.  Every day I am thankful that she allowed me to a part of their lives.

On December 14, 2011, another special child, Darnell, went to heaven as well.  Darnell was one of my "kids".  He made such an impact on my life and I was grateful to have worked with him.  I have a special place in my cubical at work dedicated to him.  He changed me.  I miss him every day.  But the one thing I know is that Darnell and Ainsley are having a blast in heaven.  I know they are playing together and I can't wait to see them both.   Sometimes when I miss them both, this is what I think of, them just having fun!

Tomorrow balloons will be flying over the sky of Central Virginia and other areas to honor and remember the passing of Ainsley.  Each balloon will hold a message for Ainsley.  As I was explaining this to Marissa tonight, I asked her what message did she want to send Ainsley on her balloon.  Marissa looked at me, very confused, because she knows Ainsley is in heaven, not sure what to say.  I then told her that the balloons were going to carry messages to Ainsley in heaven, she said, "tell her I love her".

Ainsley, we love you!  Watch for your balloons, they are going to heaven!

Losing a Waiver

Today, I received a call that I cannot believe was made.  Marissa's case manager called to let me know that Marissa lost her ID waiver, effective yesterday.  For those of you that are not familiar with the waiver process here is a short summary.  Basically, the Commonwealth offers a few basic waivers to help children and adults with disabilities.  It is not an easy process to qualify or get approved for a waiver.  The waiver system, automatically gives Marissa medicaid (which is a secondary for her) and services that she needs for her medical care.  This is what I will say about her waiver, two years ago one of our Delegates requested that I keep a log of how much money we would have to pay out of pocket for Marissa if we did not have medicaid as her secondary- the cost was staggering but it was just under $150,000.  Yes, this would have been our out of pocket pay for Marissa to continue to see her specialists at UVA and to receive her Physical, Occupational and Speech therapy weekly.   We lost the waiver because a policy was not followed, a mistake by someone else not us or Marissa but yet she is the one that is now going to be penalized.  No one but her. 

So as I sit here, I have just finished my appeal letter to DMAS.  I have called everyone and anyone I know that could or can help us.  As I was writing my letter, I just broke down and cried.  And those that know me well, know this doesn't happen often.  Usually when I cry it is about Marissa.  Marissa has been doing so good lately.  A few bumps in the road but she is making so much progress.  Now, because of someones mistake and until the appeal process runs its course, Marissa's services are terminated.  I just don't understand.  I don't get it.  I'm tired.  I'm frustrated.  But most importantly, I'm mad. 

I'm asking each and every one of you that read this to really understand how politics affects children and especially children with disabilities.  Autism is real.  I DIDNOT do something to my child to make her have disabilities.  MY child should be covered.  Families that work and contribute to society should be afforded the same opportunities for their child as a poor family.  If Steve and I were to quit our jobs, sell our home, live in an apartment- guess what- Marissa would have medicaid, we'd have food , and we would be able to draw on her SSI (Social Security Income) for disabilities.  I mean really, this is where we are as a society? 

Those of you that pray, please pray.  Please pray that this situation will be resolved quickly and swiftly.  Pray that I will keep whatever sanity I have left (haha- I know, I know-like I was sane to begin with) and that God will put the people and open doors for Marissa.  I don't want this to be a stumbling block for her and her progress.  And as you go to the polls in November, make sure you do your research about the candidate.  Understand that this is a problem not only for us but for other middle income families who are facing the same dilemma daily.  That is your job as a citizen of the this country.  Take it seriously!

Past, Present and Future

Last week, as many of you know Marissa was taught the Bible story of Lazarus at VBS.  As we were driving home that night, she spontaneously asked me if we could pray for her legs so that she wouldn't fall anymore.  She was able to identify that God had preformed a miracle for Lazarus and she also wanted to be healed.  I sent a text message to one of my friends, who is very close to Marissa, and she responded back, "Don't you wonder what God has protected her from?".  This was a very poignant question and it got me to thinking about my own life and the past decisions that I made starting as a young child.  I remember clearly that at the age of 7 my life was turned upside down and I often wonder how Marissa would handle such a major life experience as I did.  Fortunately, for her she doesn't have to experience it.  But, it left me wondering what memories of her life will she keep with her when she becomes an adult.  

While Marissa struggles to literally move through life, she figuratively does not.  While she may have melt downs and her own set of stressors, they are different from the ones that each of us endure throughout our lives.   Our lives are complicated full of unnecessary drama, disappointments and complexity, full of emotions and feelings that Marissa just can't wrap her brain around.  She doesn't understand when someone is being mean to her or when a classmate is trying to get her to do something that she shouldn't do.  She doesn't grasp disappointment or understand sadness.   But she does understand that people love and adore her.   Love is the one emotion that Marissa knows and shows.  While she can be testy and stubborn and gets in trouble a lot, she continues to know that she is loved and never doubts it.   Her brain is incapable of anything else.   What an amazing way to live a life- only knowing and understanding the emotion and feeling of love.  I understand that this has its bad points but in a lot of ways Marissa's brain is her own utopia.  There's not a day that goes by, that I am not thankful that Marissa "gets" love.   Most children with Autism struggle with physical touch and don't express any of their feelings let alone love.  So tonight, I feel blessed that Marissa is able to handle physical affection and is able to say, "I love you mommy".  Because of this, I know that her future is going to be bright because in a lot of ways she lives a protected life.

Future Tarheel???? (Hope so)

This week Marissa had the opportunity to participate in a basketball camp at one of our local high schools.   I signed her up for the camp for two reasons (1) one of the coaches was one of Marissa's past teachers and (2) I love basketball.  When I paid the registration fee, I figured that I am paying for all of this money for her to be a spectator at basketball camp, just knowing that she would not really participate.  Boy was I wrong.

The first day when Marissa got home, she said, "I need a hoop, I have to practice".   Each day Marissa has come home with some new skill that I never thought she'd be able to do.   She is the smallest in the camp. (Remember, she is 7 years old and only weighs 42 pounds.)  But that doesn't stop her, the coach said "practice".  We even got our first sports injury, a swollen right eye and busted lip.  (Yeah!)

Today, the coaches held an Award Ceremony at the end of camp.  As I was in the gym sitting on the bleachers looking at the other girls play, I went back to my olden days of basketball.  The smell and the sound.  It brought back so many memories that it took everything I had not to get on that floor and start dribbling. As the coaches and camp participants exhibited some of the skills, my dream of raising a basketball player wavered.   As they were handing out awards, Coach Trent said that not every girl would get a trophy or a medal, they had to work for it.  As she was going through the awards, I appreciated the value of not giving an award for girls that might have not taken the game seriously.  As she went on, I became comfortable in my seat and cheered along with the other families watching their girls receive awards.  Then Coach Trent announced the "Sportsmanship Award".   But, unlike others, she said something to the effect that "this girl is an honor to know" and then called Marissa's name.   Everyone clapped louder and I began to well up at this very special moment in her life.  Marissa had no idea what it meant or what it meant to others.  In fact,  she refused to get her picture taken with it, but  I realized how big my "little" basketball player was in moment.  Marissa has a very special friend, name Gretchen.  Gretchen made sure that before I left I understood that she had earned that trophy and it wasn't just given to her.

I am so thankful for Coach Trent, Coach Koenig and Coach Cruz.  They took Marissa under their wing and opened their hearts and spoiled her some during the camp.   Even the girls in the camp, learned about Marissa and that just because you have a disability doesn't mean anything.   Marissa understood everything they said to her.  In fact tonight as I was cleaning, she was yelling behind me "run, run, run" "don't stand there you need to run, get the ball".  "Really, Marissa, I am vacuuming".  Then she says to me just before I put her to bed, "when are you going to play basketball with me".  Dream come true.