Saturday, November 15, 2008
"Hope is faith holding out its hand in the dark." ~George Iles
I was planning to inundate you all with pictures of Zoey but since Saturday is my full day at home,the camera remained with Mark at the hospital.Tomorrow maybe I will skip a post and just bombard you with photos.Each time I spoke to Mark today,I would say:"How's she doing?", his response, always the same:"She's great".He said she was full of energy,thanks to that fresh transfusion yesterday.Happy and full of kisses and giggles and waves for everyone.Zoey seems to be the hit of 4 East.Nurses love snatching her up when they clock in for their day.The doctors seem enamored with her as well.Even the ladies who pop in to sweep and empty the trash,stay for a bit to bask in the wonder of Miss Zoey.We had an old friend come by today and she commented that she knows what she's seen on the blog updates but she was still surprised to see this little love looking and feeling so great.Zoey just has this magic about her and you just cannot help but be captivated.As far as her numbers go.Her counts are of course the same:zero.Who knows when we will see those pick up.Her platelets are at 22.Now, normal is 150-around 250 so obviously hers are LOW.Protocol is,in the absence of any bleeding,no transfusion until she hits 5.Kind of scary but they,meaning the doctors,know their stuff.They have also switched her antibiotic again.3rd time has got to be the charm.This one is a broader range antibiotic that covers infections of the skin better.Her g-tube site looked about the same Mark said.No better,no worse so maybe it will take a turn for the better over the next few days.I missed her today.I did better being away from her today then the past two Saturdays.Still,I had this inexplicable feeling, in certain moments, that she was here but I suppose that is normal.Speaking of normal.Our new normal isn't exactly falling into place smoothly.A groove hasn't been found.More like a pattern.Some consistency to schedules thanks to wonderful family and friends that have stepped up and are so unselfishly giving to us their time and most especially to the boys,their love.Joe, my poor little guy, has some issues going on to say the least.So apparent today.I emailed his pediatrician today and hopefully a meeting of the minds may yield some answers on how best to help him.For a child who has behavior issues,namely ADHD and defiance stuff,life altering events like this, do not bode well.As for me,my stress,knowingly or unknowingly,limits my ability to be as patient and understanding.Honestly,I felt like an utter and complete failure.He was so out of control in some moments today that I was at a loss as how to parent him best or at all really.Seriously,I spoke out load, that I wondered just how far God was trying to push me to the edge before I lost it.Jake becomes the innocent bystander while Joe and I go at it.We sat and watched a movie tonight.Towards the end Joe said,out of the blue, "I am sorry I can't behave,I can't help it,I try,it's just so hard.I don't do it on purpose." Well ...that was all it took for me to go completely over.This little child is in such turmoil inside.He went on to say he missed his baby sister and asked "How many more medicines she has to get till she comes home?" He was crying.I was crying and Jake was crying.I paused the movie, we talked and it became more and more evident that we are all in crisis.I told the boys we have to be strong and brave and pray that Zoey gets better and can get home to us for awhile.I can't tell them the one thing I yearn the most to say and that is ,that everything will be okay.I can't promise them that because I do not know what the future holds .We have no guarantees that this will play out the way we all hope and pray it will.Those thoughts become unimaginable and therefore I do not and will not dwell there long.I have no way of sheltering any of my children from a far deeper sadness and tonight, I saw with clarity, my inability to protect them from the reality of cancer.What a day.What a night.No mommy of the year award for me tonight.Quite possibly Child Protective Services may come knocking.Yes, tomorrow is a new day.The boys want so very badly to see Zoey but they still have remnants of colds that they started last week.Bad timing.They need to see her and she needs to stay germ free.Pictures aren't cutting it for them so hopefully before long we can get them down there to see her.I head back early tomorrow morning.Mark will be home to do damage control on my behalf.My sister Shannon is coming down to keep Zoey and I company tomorrow.Hard to believe Wednesday will be our 3 week mark.A lifetime crammed into such a short time span.My prayers can only be that time continues to pass relatively quickly,that my tiny fighter continues to do battle as courageously and effortlessly as it appears she has been.That our family will continue to rely on the support of those that surround us and that we look to God to carry us in our weary moments.My expectations of myself have been totally unrealistic.I have got to give up the supermom complex that I often waltz through this life with and let go and allow things to flow as they are meant to flow.I so wish I could wave my magic wand or click my ruby slippers and return us to a simpler time.One that found us,a family of 8, just wading through this life,doing this life we have been blessed with, justice. A time that mirrored similar characteristics of the one we find ourselves living today,the common thread a resilient little girl,who asked for none of this but has been far more forgiving then the rest of us.I love you Zoey.My sweet,sweet child.I go because you go and so it continues.We battle forward ..... together.