Medicine Mayhem

I had to hold back and wait to write for some time.  The start of medications was a very overwhelming process.  I was previously very upset about all of this, and just couldn't handle blogging. 

I totally agree with Fidelity, her medications were "gross" and she didn't want to take them, nor does she even understand why she has to.  Her world has forever changed and she doesn't understand it at all.  What a trooper though.  We went through a variety of foods and drinks to find the perfect thing to hide medicine in.  We knew that if she is not compliant, then we may have to look into getting a g-tube for all of her medications.  We got to a point where we were tired of fighting with her and with her belly being so full of medicine mixtures she would often throw up.

So here we are now, it was not the most exciting process but we did force Fidelity to learn how to swallow her pills.  She got to a point where she would flat out refuse, or she would prolong the agony taking up to an hour or more just to take 3 medications in a mix or oral syringe.  Well, it had to stop.  I cried a lot, she did too, but we made things happenn.  She still fusses, but is doing SO much better.   She is now able to take 5 out of her 8 medications, in pill form.  It really is tough love some times, and she is presented with the option of "okay, the hard way or the easy way?"  Sometimes she still chooses the hard way, but once it is all done with she carries on as if nothing happened.

Fast forward another month and I would say just within the last week and one-half, she is starting to keep her medications down.  It was getting very difficult to plan to go anywhere due to the unpredictable sick episodes she would have.  One moment she would be playing  happily and the next screaming in agony due to her stomach hurting and yelling to take her to the bathroom where she could be sick with minimal mess.

She is doing very well and it is my hope that we can begin to get out a bit more.  I would love her to meet other children and be able to play, laugh, and run around.  I never thought I would see it, but I feel the isolation has really brought her down and broken her spirit some.  I simply want to get her out and live like any other child.  I often think of her and refer to her as the "sunshine" in the house.  I want her outdoors where her infectious rays of light can touch others.

Hey God, whats up?

So, I think the most common knee jerk reaction to learning that your child has a major illness is to blame God and be angry with God or whatever....  That is if you believe in a higher power or something like that. 

I certainly asked "Why?... why me?... why her?"  and have prayed that she be healed.  However, really, what makes ME any more favorable over anyone who has to suffer with a similar situation?  It is upsetting to me that it is a child who has to suffer.  In view of it all, looking at who she is already, and knowing how much she is loved, better it be us who will take care of her than a child who would possibly suffer by neglect in a similar situation. 

Honestly, as I slowly come out of the mourning of her illness, I feel as if a great story of hope lies within our journey.  It is very hard to type the next words.  I am grateful that if anything, this has completely changed my perspective of what really matters.  Isn't is a shame of human existence that sometimes we have to have something, like this, happen before we can truly see what it means to live?

HOPE!

Who would have thought of all places I found HOPE?  After much Google time, I decided to query Facebook.  There, I found the Cystinosis Research Foundation.  The founders are parents who have a beautiful daughter, by the name Natalie, who also has the disease.  Cystinosis is an "orphan disease", which means that it is so rare that it lacks funding for research to treat and/or cure the disease.  I am sure that Natalie's parents had felt, and probably still do feel as I do right now.  I cannot sit idly by and watch this disease overtake my daughter.  I will fight for her, and willing to fight for every child who has been diagnosed.

I encourage everyone to "Like" the Cystinosis Research Foundation on Facebook.  The more awareness the better.  I recall reading an article recently that in some countries children may be misdiagnosed and suffer from it simply due to lack of knowledge in the medical community.

If you would like to learn more about Cystinosis and perhaps even donate toward their research for a cure, you may also visit their site: http://www.cystinosisresearch.org/

What it is.

Cystinosis.  The word makes me feel sick to my stomach.  To read it, hear it, or say it...  I was  desparate for answers.  It is rare, oh so very rare.  I did Google the hell out of it.  I needed answers.  I compare the feeling while researching, to standing in a crowd, yelling for help but no one could hear you or even acknowledged you, no matter how loud you would scream or how desparate the plea.  Nothing, just silence.  Mostly, I would find the horrible ways this disease would effect the body.  God, not that sinking feeling again.....

The "News"

"Just provide a normal as possible life for her..."

What does that mean?  After the doctor had drawn out a diagram of the kidneys, and how they work and went over various medical terms.  I asked two questions, what does this mean for her future?  What about her eyesight?...  "Oh there are eye drops for that"  "Most children with this disease will have renal failure by roughly age 10...."  Okay time to meet the dietitian...

How am I to process that?!  I didn't get into it.  My son was there and we were both in tears.  My husband should have been here.  I didn't realize it was THAT kind of an appointment.  I know he would have been.  I thought it was just a general follow up, not "The News" appointment.  Could we have been notified that we should have come together?

It has been roughly two weeks since that follow up.  The physician did apologize a great deal.  He realized the delivery of the news was at a less than ideal time and is hoping that we will give him a chance to help us through this journey and our daughter's care.

The time since that appointment has been pure hell.  If there is hell on earth, I was living it.  An unending sinking feeling.  The tears seemed to never stop on some days.  I would wake at night in a panic.  I have had many a dream of rescuing my daughter.  Also, I would have dreams of earth quakes and the walls crashing in around me.  As a mother, all I could do is hold her tight; wishing I could heal her, absorb this sickness inside her little body.  I felt this way with my son not even a year ago when he was in the hospital. 

I cannot even share the number of emotions that I had experienced.  Fear, frustration, anger, and even guilt.  Why? Will I ever feel normal again?  Will it just be a new kind of normal?