A little rainbow

Sometimes life can be pretty brutal.  Our family has been through a lot and it is very difficult to keep a smile on and a positive attitude.  When we had a bake sale at work for Destiny's JDRF walk many people came up to me and told me that they would never have guessed that I was going through something so difficult.  I take that as a compliment.  What they don't know is that Diabetes is just the tip of the iceberg.  Destiny has complete lack of bladder and bowel control.  She has epilepsy, a cognitive disorder, vision problems, sensory issues, headaches, muscle spasms, lack of coordination, tingling of her fingers, back pain, severe mood swings, and sensitivity to heat.  Each doctor sees her for a different symptom but none of them will look at the big picture and help me to understand what the problem is that is causing the symptoms.  We are going to see a developmental pediatrician and he is probably going to diagnose her as being on the autism spectrum.  I found one doctor to listen to me and he feels she has a problem with her central nervous system.  He sent me to a doctor that he thought could help me.  That doctors response????  "You know she is autistic, right?"  I was floored.  She deserves good care whether or not she is autistic.  I told him that what I wanted was for a doctor to see my daughter as a person, not as a medical record.  She is human.  She has feelings.  She knows she is a bright beautiful girl trapped in her own body.

I believe that she has changed my life.  She makes me see things from a different perspective.  She has taught me compassion and true love.  I only wish others around us could learn the same things.  I believe that children learn a lot from their parents.  I think we say things and don't realize that we just passed that on to our children.  A good example of that is today Destiny said, "I sure hope they don't re-elect Obama."  How would she know what her views were on Obama unless she heard them from someone else in her life?  The same goes for children that have either gone to school with my daughter or have played with her elsewhere.  I know that my daughter is different.  I just believe that we need to teach our children that different is ok.  Children have made fun of my daughter and made very rude comments to her that she internalizes.  She starts to believe what they say.  With that being said I want to make a few things clear......

1. Destiny did not get Type 1 Diabetes because she ate too much sugar or because of an unhealthy diet.
2. Destiny does not CHOOSE to be different.
3. None of the things that are wrong with Destiny define who she is.
4. She is just a little girl who wants nothing more than to have friends and fit in......just like every other child.

And then there are the angels in my life.  I start to get down on life and on mankind in general.  I tell God that I am resentful and although I know that life is not fair, I don't like it.  And then he shows me there are angels who walk among us every day.  We just have to have our eyes open enough to see them. 

A manager I work with came in and asked me to use 3 words to show how my day was going.  I said, "St. Lukes"  "angry"  "frustrated".  And he said something to me that I didn't want to really hear but now I know he was one of my angels.  He told me that life is frustrating.  That the medical field can make anyone angry.  That just hearing St. Lukes can make anyone upset.  However, he believes that I should be proud of myself.  He says that what I do every single day most people could never do their whole lives.  He says I am a mom that most people wish they had.  He told me to remember that every time I am fighting for my daughter.  To remember that what I am doing is commendable and honorable.

Then I go to the Canyon County Fair to see Brittni's blue ribbon (and best of show ribbon).  We meet up with my mom and dad and son.  My mom tells me their is a guy selling cell phone holders that thinks he has one that will fit Destiny's insulin pump.  We go over to check them out because my mom says they are only about $10.  We walk up and he asks to see her pump.  Then he asks what color she wants.  Pink of course.  He walks over to a box, picks out a pink holder and brings it over.  It fits like a glove.  I was excited and so was Destiny.  I asked how much.  He said it was $10 but he would sell it for $5.  I started digging out the money and he said "You know what?  Forget it.  It's on me."  I tried to argue because after all, I would have paid the $10.  I believe he was sad that Destiny had such a devastating disease.  With some tears in his own eyes he says to me "It's my company and I say its on me."   Wow.  My husband shook his hand and told him thanks.  I couldn't, I was crying.  After all, God just showed me another angel.

I am going to share some personal things here that I normally wouldn't share in the fear that Destiny may some day read this.  First a disclaimer:  I love my daughter more than words could ever say and I don't want anyone to get confused about that.  I also would not change her for the world.  I am happy with how she is and I believe she makes me a better person.

Destiny has always been a difficult child.  I guess the only way to explain it is that she has always been extreme.  She is either EXTREMELY happy or EXTREMELY angry.  There really is no happy median with her.  When she was little and we would take her to McDonalds she would play with all the other kids and have a blast.  Then about 3 years old she started to pull away from others.  By the time she started Kindergarten she began to isolate.  There are times she still tries to socialize and says she wants friends but it seems that she does not have the skills to be able to make or keep friends.  She gets very angry and lashes out by yelling and scratching and even pulls her own hair and scratches her own skin.  I am always on constant alert trying to avert a bad situation before it gets too out of hand.  Sometimes I am successful, and others not so much.

When I took Destiny to the Dr. here a couple weeks ago I mentioned that we were taking her to a developmental pediatrician.  She asked me why and I tried to give her a few examples without hurting Destiny's feelings.  I also mentioned that the school is wanting to put her into special education next year.  The doctor looked at me and said she thought all of that was ridiculous because Destiny seemed fine to her.  I must say that I lost it.  I told her I felt that she could not determine what was in the best interest of my child when she got to spend 10 minutes with her a couple times a year.  I explained that Destiny does not feel comfortable with her so she pretends to be invisible and never even talks to her.  She may look "normal" to her but her behaviors tell a different story.  I would never change my daughter because I feel that she has taught me a lot of things about life.  However, I feel that my daughter would benefit from some programs only available to children with a confirmed diagnosis.

Am I wrong to push for a diagnosis for my daughter or should I accept that my daughter at almost 9 years old is just a "late bloomer" and someday she will finally be toilet trained, that she will someday be able to make and keep age appropriate friendships, that she will one day wake up and be able to read and function normally in society?  I'm not sure of the right answer but I am sure willing to fight to find an answer, right or wrong.....