Take CHARGE for Alivia

My daughter, Alivia, was born 4 years ago.  My pregnancy was normal, no warning signs anything was wrong, until she arrived.  Alivia had the cord wrapped around her neck, was struggling to breath, and after two hours I got to hold her.  She opened her eyes for me and I right away noticed a difference in her right eye. She was transported 60 miles away from where I gave birth to her to Children's Memorial Hospital in Chicago.  My husband followed her and I came the next day after being released from the hospital.  Our journey began right at that moment.  I will never forget the sound in my husband's voice as I was traveling to the hospital asking me when I was going to get there.  Alivia had a lot more going on than just her smaller eye.  When I arrived at the hospital, we met with a team of Dr's that suspected this and suspected that.  The one thing I did remember was they suspected she had Noonin's or CHARGE Syndrome (www.chargesyndrome.org).  The biggest fear for a new mother was something is wrong with your child.  I also had a 2 yr old at home that I had to care for too.  The next week was the hardest for us.  We stayed with Alivia and did our research and found all the worst case scenario's. I continued to travel the 120 miles round trip every day until Alivia was able to come home.  On the days I wasn't able to get there, we arranged for the nurses or a family member to hold her.  Human touch is so important and we started see a little bit of improvement in her.  Not only did Alivia have CHARGE, but she had to have her pulmonary valve ballooned at a month old, she was deaf, she was blind, and she couldn't swallow. How were we going to communicate with our child?  So many scary thoughts went through our head those first few months.  So many scenario's, so many emotions, but mostly we thought about how was she going to have a quality life? We quickly discovered that she wasn't entirely deaf and wasn't entirely blind. Her small eye has no vision and we were able to find an ocularist who made a shell to cover that eye and promote growth in her eye socket to keep her face symetrical. She also is  now wearing hearing aids to help with sound.  Alivia continues to fight to do everything a "normal" child would do, fight to learn those natural habits a child already knows.  She can't do everything her friends can do.  She's a bit of a loner. She can't keep up with the kids and can't see them well.  So she sits by herself and plays alone mostly, or with Alaina, her sister. She has sensory issues we tackle everyday.  She rocks back and forth, banging her head in the car, when she's tired, or irritated.  She lashes out at her sister, who has had nothing but love and patience for her sister from the minute she finally got to see her. Alaina has talked to her friends and schoolmates about her sister.  Why she can't see, why she had a feeding tube, or now it's a second belly button, and why she's not able to do all the things the other kids are doing.  I can't imagine what it's like to have to explain to other kids at such a young age.  
In addition to all the 'stuff' we have with Alivia, my husband was laid off from his job after 14 years in 2012.  He carried the insurance for our family.  This all happened 2 years ago and our world has changed so much!  We've searched for jobs for both of us.  I have been able to get a job that I enjoy, but paying the daycare bills, paying the rent, paying the utilities just isn't happening with my job.  My husband found a seasonal job, but we don't know what will happen after the season is over.  While trying to stay positive, I am scared that if something happens to the car, or to Alivia, we have nothing to fall back on.  There are so many people out in the world that can help, and I am not afraid to say, I need help.  

I know thank you isn't enough to say, but from the bottom of mine and Alivia's mended heart, we thank you.  We thank you for your kindness, we thank you for your generosity and we thank you most importantly for your prayers!