Saturday, May 26, 2012

Teaching me

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
-- Albert Einstein

Many times in my life I have heard that there are no more bible type miracles happening. I at one time    believed that quote. That was before I met Mighty Z.

Not to say that the miracle of LA LA's birth was less than. I just felt at the time that everyone had perfectly healthy normal type babies.

Oh of course I HEARD about children who were born with something wrong, but that only happened in stories that you read in magazines and books. Sometimes you heard of someone who knew of someone else that had a child on life support machines, but never anyone YOU knew.

I know that many times in my blogs I write about the woes of having a child who is considered a chronic, complex, critically ill child, and how hard it is. (and it is) I mean it is not all rainbows and pony rides here.

Mighty Z has taught me many things and here are just a tiny bit of the knowledge Z has passed my way

What Mighty Z has taught me:

Faith- When Mighty Z was born I was told many times by many doctors she would not live, that I should turn her machines off and let her go. I had to have faith in God and in Mighty Z that she would live.

Strength- You never know how strong you are, until being strong is the only choice you have. Since Mighty Z was not going to give up that meant I couldn't give up either.Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength. I had to learn to be as strong as Mighty Z.

Awareness- I learned that there were children with disabilities all around me and that it was my choice to see them. I learned to celebrate the abilities in all children and never the dis. I now find myself looking for these special children. 

Patience- I have never been patient I have always hurried up for the next "big thing". I learned you can't hurry up and teach a kid to breathe off a vent, or have them decanulated asap. It takes time and yes lots and lots of patience.

Acceptance- I learned that even though I have had faith,strength,awareness, and patience sometimes the thing I was working so hard towards just isn't possible and that Mighty Z is perfect just the way she is, machines and all.

I learned to praise God that Mighty Z is on a ventilator. Because with out that ventilator I would not have my Mighty Z

I learned that a bible miracle happens everyday when Mighty Z wakes up and takes her first breath on her own.

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Wednesday, May 23, 2012


Sometimes I am on top of my game with Mighty Z. I sometimes can juggle better then most clowns at any given circus.I will be calling, emailing, researching, demanding, going full throttle on everything my Mighty Z needs,and then sometimes just the thought of having to talk on the phone makes me want to run for the hills.

I have been on a "figure out whats going on with Mighty Z" marathon for six months, and now I feel the need to go into hiding.

I often joke that an insane asylum or prison sounds like a spa to me hey can you blame me? You get three hots and a cot right? No one to cook, clean, hook up to machines, listen for alarms, deal with insurance, DME companies,therapies, and doctor offices. AAAAAAhhhhhhhhhh if I am good maybe they will put me in solitary confinement with a good book .

I feel like I go in spurts of being "productive" in the care of Mighty Z to the I will deal with them later manana attitude.

I do feel guilty when I am in the latter mode but then I think we also need a time to gather our reserves, count our chickens and recoup for what you know will be coming up next.

Not to say that I am not still up many nights with Mighty Z's machines. I say it that way because Mighty Z just informed me that she never even notices that she has had a breathing treatment, been repositioned a million times, or infact had been put on oxygen. When she does notice in the morning she has been on oxygen, and she is bright eyed and bushy tailed she often yells "SCORE no school for me today" I on the other hand would love to put that bushy tailed kid back to bed so I can get a couple hours of sleep.

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