Sunday, December 30, 2012

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 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!

Thursday, December 13, 2012

"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.

Wednesday, December 5, 2012

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.