Monday, November 23, 2009

Spinning Plates

We survived the week of conferences.  Not what I expected but my children were made in God's eye, therefore they are perfect for His plans.  I can't ask anything more of my children but to give full effort.  I can't ask anything more of them but to be kind and loving.  Bad news is they don't meet report card guidelines and testing.  The most wonderful news is that I was told they were good kids.  My sons teacher told me that is very kind.  She has never heard him saying or doing anything unkind.  Not that he hasn't mind you, for he is a child.  But to be told, sure he doesn't learn like the rest but his heart is good, well that just pleases the peach out of me.  He is tender and beautiful in every way that I could possibly want.  I look at him and still see my little chubby, bald, rounded headed baby.  So innocent, so pure.  I hope he stays that way.  Words don't come and go the way they do for us.  That makes him all the more however.  I compare it to being blind or deaf.  It has heightened a sense in him.  A sense of awareness.  Aware of his own ackwardness and vulnerabilites.  Painfully aware at times as he is not like the other boys, but wants to be so bad.  I wish I were weathly.  I would have him privately tutored.  I would find what makes him work and how I can help him keep swimming.  Although on a humanistic level he his flying free. Academically, not so much.   So when you go to say,  "hey my kid is gifted", I can only say in return, "so is mine."   If you know me even a little I really wanna say "yeah yeah psshhhh fiddle dee dee kiss it".  My sons teacher, she is hero.  I have heard so many different things about her prior to my son entering her class I was completely mortified he was placed there.  I even went with my concerns to the principal about the situation before school started.  Wow, did I learn a lesson.  She was tender and sincere.  Organized and willing.  I just enjoyed our talk so much.  McGuire and her seem to be a perfect fit.  

Ode to being a Mother
So in the middle of my intense conversation about how we are going to help my son, the hospital calls.  I had warned her they might because they had called early and left a message they wanted to talk to me.  Well the clinic does not ring direct.  You call leave a message.  They return your call.  Sure enough they did.  Ms. R was very understanding.  Gary's lab work from Friday came in with some low numbers.  His white cell count is lower than they expect along with another level.  This is from his new medicine cell cept.  I was told not to increase the dose as planned.  We go back in on Friday for another lab.  Depending on his levels they may add another medicaton.  The nurse urged and warned me to stay away from sick people.  With this particular level down he is more susceptable to bacteria infections.  So the simple sniffles could spin off,    you get the picture.  All mighty God's protection be with us!  Has so far : )  Praises!  I did ask the nurse if these certain levels can make you pale.  He gets that irrey white when he takes a nap.  Enough to make me panic and have to call a relative for reassurance.  She said no, that is hemocrit looked fine.  He did a have a few unusal fits where he got very agitated for no reason, well a two year old doesn't need reason but none the less he was very angry crying, and very pale.  Just keeping an eye on him closely.  Personally I think they have failed to realize that maybe the cytoxan is still hanging out in his system.  Or they do realize that but need to medicate further until his body stabilizes and get use to his new immune suppressor.  Good times.  We'll see on Friday.  So, off the phone with the hospital and back to conference I went.

We are gearing up for Thanksgiving.  I have a lot of cooking and preparing to do in the next couple days.  I have Grandma coming to stay with us so I need to go around prying the gumdrops off the cushions and get this place in tip top shape.

In February there is a benefit marathon/convention for the Cure JM foundation.  I am really considering trying to go.  We are blessed with a way to get there.  I just need to consider all the other expenses as well.  I really would like the whole Bradford family to come.  It is not just Gary that has been through it, we all have.  Although he gets A LOT more credit then all of us put together for all the needle jabs, ng tube insertions, icky tasting medicines, the pain, sleepless nights, and just being brave.  The marathon......hmmmm I think I might.  Twenty-six miles is a lot but so is not being able to walk and dealing with Dermatomyositis the rest of your life.  Even in remission, not knowing if it will come back.  Then when or if it does, starting all over again.   So am I proclaiming my intentions of this said marathon??,        almost.   Need a couple more days.  I can run two miles no problemo,   well sweaty and really talking to myself to keep going but I most certainly am capable.  Besides that it reduces the size of your hinney and it so good for you!  And just trying out my running legs, my hubby commented mine might be smaller.  LOL  sorry  TMI   So as long as I don't go into cardiac distress LOL.  

We keep close tabs on our celebrity friend Mason.  Mason we had the honor of meeting this summer at the concert.  Whenever we visit his blog my kids rush over to the screen and shout Mason!  The Smedley's link is on the right hand side of the page >>>>>> if you want to pop in.  Oh yes, and his Dad, Damon.  He is responsible for my attempt at running a marathon.   
Ye of little faith,  I hear your doubts!


  1. Wow! I think it is sooo wonderful that you are thinking of joining in on the JDM marathon! You are being the legs of all of us who can't!! All of my friends and family have said if one comes closer to us they are all going to be my legs for me!!
    I betcha your one proud momma that the teacher said your child was so sweet!! That says something about his character and his MOMMA! :0)

    Oh by the way I was on Cellcept for awhile and my cell count dropped low once when I first started it and they made me stay away from like everyone.... Don't worry though it sooo goes back up quickly!!

    Summer :0)

  2. I am glad to hear that Gary is doing better. I totally understand the low white blood count. We deal with that regularly. I will be there to cheer you on in Austin. Running is not my thing. I had full intentions of walking the half marathon, but I am not sure that will happen this year. We are still waiting to get labs back from Kya. We had to take her in Monday because she was showing signs of a flare. I really appreciate the confidence you have in me and informing me about Mandy. I was able to talk to her while I was meeting with our doctor on Monday and he said he would see her on Tuesday. He saw her and they started infusions and meds that day!

    It makes me feel good to know that I can help just a little. I remember that feeling of helplessness and what do I do next. I can't believe we are coming up on 1 year. It has been a rough few weeks with the holidays and all. But, I know that God is in control and that she will be fine. Also, it is crazy at our house because Lake is directing the adult Christmas musical at church and I am directing the Childrens one. I have from Kya's age to 6th graders and it is crazy!! I must be insane. On top of it we go to Chicago the week of Christmas!

    I will continue to pray for Gary and we all said prayers for him tonight! Keep in touch and hang in there mama tiger!!!