Wednesday, June 24, 2015

Why Me?

These are the questions I will sometimes get when people find out that I have a child with a genetic disease. 
  • Are you mad? 
  • Do you feel you have been burdened with a giant heavy weight in life? 
  • Do you ever think, "This isn't fair."? 
  • My personal favorite is that people assume I walk around saying, "Why me?"
My oldest when she was only a few days old.
My first thought to all these questions is...why are you asking ME?  You should talk to the person that HAS the genetic disease.  SHE is the one with all the "burdens" you are referring to.   I can honestly say that from the scary moment when our oldest child was born sick, through the numerous surgeries, and then the Cystic Fibrosis diagnosis; I didn't waste time wallowing.  My boot straps were pulled up and boxing gloves were on snug.
My oldest all grown up and wearing my clothes...that's just crazy.
However, here are my responses to these questions.

Am I mad?
Mad at what, whom, why?  I have nothing to be mad about.  I have a husband that loves me and our 4 beautiful children, one who happens to have a life shortening genetic disease.  What is there to be mad about?  I embrace each day and look for the good.  My sister has always said I am a Pollyanna; always looking for and finding the good in things/situations/people.  Guilty as charged; It's true.  Why see bad things when you could see good things?  It's simple; good things make you happy and bad things do not.  I want to be happy.  Do I still see the bad stuff?  EVERYDAY the bad stuff is there.  Bad stuff will swallow you up if you allow it.  Yet, there is always a sparkle of happiness.  I see it and you can, too.  ALLOW yourself to see the good in others and eventually they may choose to return the favor.  Life is full of tough situations and difficult relationships.  There are plenty of opportunities where the wrong words are spoken and the feeling of love and respect seems lost.  YET, goodness is still there.  Once I talk through my sadness on life's tough moments and feelings of loss...the sparkle of good shines again.  Go ahead, be know you want to:)
Good friends by your side will make the "Pollyanna Effect" easy to maintain.
Do I feel I have been burdened with a giant heavy weight in life?
Cystic Fibrosis, breast cancer scares, surgeries, lost relationships, lack of forgiveness, miscommunications, car accidents, health could I pick just one heavy weight?  Instead, I have chosen to not carry any weights with me.  I choose to carry around smiles, giggles, adventures, and joy. 
There are times when I can't find those things just like my car keys the dog has run off with or my phone that I can't seem to keep track of unless it is strapped to my forehead. 

Then one of my kids will run over and kiss my cheek saying I am the best Mommy ever or my husband will send me a text from work saying he appreciates me so much.  Ahhhh, yes, there is the joy and giggles that were lost for a moment and then found again.  Choose to look for and carry around that happy and drop the sad like it was hot. You owe that to yourself and your family.

Do I ever think, "This isn't fair." ?
Why would I ever waste my time thinking this?  Friends have sickness, other genetic diseases, cancers, and major health problems they juggle everyday. There are people all over the world starving to death, without homes, and without fresh water. There are friends out there that have lost loved ones too soon; parents, siblings, or children in utero, at birth, as young toddlers, children, teens, and adults. They hold onto their memories and I get to hold onto my husband, my kids, and my parents. Yet, I am going to complain my daughter has a genetic disease that MAY take her too soon?  I don't think so.  She has access to amazing medicines and doctors at any moment we need them to help her with her complicated health needs.  My life is nothing to complain about...ever.

Do I ever ask, "Why me?"
I have not and will not ever ask this question of myself.  Do I wish my child did not have this health issue to complicate her life?  Sure!  No one would wish heartache and health issues on someone they love.  I do not think I was given a child with special needs because I could handle it.  I think ANYONE can do ANYTHING for their children when they have love in their hearts.  Some will do better and/or more gracefully than others and we will all think that we are failing in some way, but parents are always going to try their darn hardest for their children. 

You should see the trend here.
(If not, my English professors told me that a journalist/author I am not.)

A very wise and beautiful Aunt told me, "Live with NO regrets." 
Life is simple yet we chose to make things complicated. 
K.I.S.S (Keep It Simple Stupid)
Show love to people around you. 
Find joy in as many things as you can during your day.  Make it a game.
Don't carry the weight of sad/bad/mad when life is so short. 

Yes, life is difficult, yet you are still alive...marvel at that and be thankful for it.  You still have time to love on the people around you.  Yes, you can mope; but while moping, be searching for that sparkle of good while taking the moment to squeeze your family tight. You have this moment right now and once it passes, it is gone and you can't take it back.

Sooooooooooo........Why me?  Because I am worth it.  I am worth fighting for.  I owe it to my family to take care of myself so I can take care of them.  I deserve joy and loads of it so I can spread that goodness around. YOU DO TOO!

P.S.  Elena's health is doing very well as you may have guessed from her pictures above.

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