on ITP

It's late.  Almost midnight.  We just got back from our vacation earlier today.  The day has flown by.  Lots of washing of clothes, putting away of toys from grandpa and grandma, taking down the Christmas tree, taking the suitcases back in the attic, and tending to two littles that are overtired and yet way too energetic.  I am exhausted.  But I am not complaining.  Exactly one year ago today, I got my baby out of the bathtub, noticed a rash on his arms and elbows.  I hollered to Chris.  "Can you come look at this?  It looks weird, not good."  Maybe only a few minutes passed, I don't really remember.  All of it is a blur.  Chris grabbed Blake out of my arms and started screaming.  Not at me, simply at the situation.  I do know I called my sister.  And my mom.  Not sure what I was going to tell them, because I didn't know anything.  Chris called James.  James and Carrie came over.  They got to our so quickly.  Chris was holding Blake.  I kept thinking that it was fine.  That they were going to tell us not to worry.  They didn't.  They told us that we needed to get the office.  Blake needed a CBC.  Their faces were concerned.  They didn't make eye contact with us.  At this point I was crying.  I called my mom again.  She came over to watch Beckett.  Chris was still screaming.  He kicked the dog, (which of course he regrets now). My heart was beating so fast.  My mouth was so dry.  I felt like I was going to vomit.  We drove to Chris' office.  Maybe we flew there.  We got there way to quickly and yet it seemed to take forever.  Chris' nurse met us there.  She stuck Blake's finger. It wouldn't stop bleeding.  She put the blood in the machine.  We waited.  Blake's finger wouldn't stop bleeding.  I kept staring at it.  The way she was holding his hand so high above his head.  I barely noticed Chris falling to the floor.  Sinking down.  His color drained.  I remember somebody screaming.  It was only later when I realized that it was me.  I was screaming.  Chris wasn't talking to me.  He was on the phone to the hospital.  Talking and talking to a hematologist.  I sat there beside him.  Pleading with him to tell me something.  Blake was still with Shannon.  Still bleeding.  I kept hearing snippets of the conversation.  Admission. ITP. Leukemia. Brain bleed.  I just sat there.  Frozen in the chair.  Freezing cold and burning hot.  Chris hung up the phone.  "Blake needs to go the hospital.  Now."  I called my mom.  We drove home.  We packed our bags.  I took a shower.  Crazy, huh?  But I wanted to be clean, to be fresh when I received a diagnosis.  I remember kissing Beckett goodbye.  Looking down at him in his crib and wondering what this was going to do to his life.  Blake was the sick one, but Beckett would be the forgotten one.  And I cried.  We got to the hospital and were a direct admit.   No waiting.  They were waiting for us.  An IV was started.  People were in and out.  Explaining different scenarios.  Either ITP (idiopathic thrombocytopenia) or Leukemia.  Blake needed a medication called WinRho.  If it worked and his platelets responded, then he would receive the diagnosis of ITP.  If not, then chemotherapy was in our future.  We had to wait eight hours.  Eight long hours to determine if his body accepted the WinRho.  That drug made him violently ill.  Fever, chills, vomiting.  I couldn't hold him.  So I climbed into the crib and cradled him with my body.  Willing his platelets to rise.  I did a lot of bargaining that night.  With God.  His counts were taken about 6am.  We waited for the lab to read them.  His counts went from 3000 to 17000.  A positive response.  A diagnosis of ITP.  And that began our journey.
This past year has been....so hard.  I can't really put it into words.   One year from the date of diagnosis it all seems so distant.  Because I have never dealt with it.  I didn't take pictures to document his transfusions.  It was just too damn hard.  It feels as if my heart has had an armor of caution around it this past year.  I love Blake.  But God forgive me, it terrified me to love him.  To get to close.  For fear of losing him.  Can you imagine looking at your little, noticing a bruise and wondering if he is bleeding inside his brain??  Can you imagine trying to tell your toddler not to go up the steps, lest he fall??  That he can't get sick because it could put him in a ITP crisis?  A little cold could f#!K it all up??  Having to go for a CT scan every time he falls?  Having to go to work to take care of other sick babies when all you want is to take care of your sick little?  Not really caring at all about anyone else.  Lining up childcare for one son while the other son is getting a transfusion.  Becoming that family that is on the prayer list at church.  Staying awake until the early hours of the morning researching ITP.  Watching youTube videos of children with ITP...dying??  This past year has sucked at times.  Yet out of the woodwork came angels.  That live right here on earth.  My family has witnessed so many deliberate acts of kindness this past year.  So much grace.  Cause here's the thing.  Taken from Mayo Clinic..."serious and possible fatal complications due to extremely low counts (<5 hemorrhage...="" include="" intracerebral="" or="" subarachnoid="" u="" ul="">
Blake's platelets were 3,000.  He never had a bleed.  He is well.  He is a happy toddler.  Loved by so many.  But recognized as a gift, a blessing by his momma every day.  I don't know what I would have done if something had happened to my son.  I hope I will never have to know.  I hope that he continues to thrive.  I hope I am able to stand beside him for as long as I live.  Cheering him on.  And that he will always know that his strength carried me.  When I should have been carrying him, He carried us all.  I will acknowledge this.  That there is no pain as that of a mother watching her child suffer.  And yet, how much sweeter it is when that suffering ends.
I am rambling.  So much to say.  And yet there is nothing left at all.  Tomorrow we go in for a final CBC.  I am anticipating a remission diagnosis.  But if, if that is not the case tomorrow, I will stand tall.  I will hold my son.  I will rip the armor off my heart and love him fiercely.  Because to know Blake is to love him.  And I would do it all over again.  And again.  And again.

BEAUTIFUL THINGS

GUNGOR

all this pain

i wonder if I'll ever find my way?

I wonder if my life could really change at all?

all this earth, could all that is lost ever be found?

could a garden come out of this ground at all?

you make beautiful things

you make beautiful things out of the dust

 you make beautiful things

you make beautiful things out of us

all around

hope is springing up from this old ground

out of chaos life is being found in you

you make beautiful things

you make beautiful things out of the dust

you make beautiful things

you make beautiful things out of us

you make me new

you are making me new

you make me new

you are making me new

making me new

you make beautiful things

you make me new

you make beautiful things out of us

you are making me new, making me new

you make beautiful things

you make me new

you make beautiful things out of the dust

you are making me new, making me new

you make beautiful things

you make beautiful things out of the dust