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.


Mia hat eins mehr said...

It`s really heartbreaking. I know you are such a strong women but when it comes to more than one child that needs all of your time you cannot be 100% perfect. But in my opinion, you deserve the best mom award, because you really try. Although you must be really tired, full of fear yourself and not knowing what the future brings. I think the boys know that you give your best. I`ll light a candle for you all tonight in church.

Anonymous said...

I am so happy Zoey is still feeling okay. One less thing to bring stress to the family. My thoughts and prayers are constant.

just jean said...

I think that your tearful conversation with the boys helped them a lot. Isn't it just the fear of the unknown that causes us the most stress? Once we know something, our coping mechanisms can kick in. Their little imaginations probably are working overtime some of the time. Especially when there are no definite answers right now.
Take the moments one by one. Keep faith and love the constants. (as you are already doing) Lean on our prayers.


WheresMyAngels said...

You have my continued prayers. I'm glad that she is acting well. She is a doll.

Anonymous said...

It warms my heart to hear that Zoey is doing well and it tugs at the heartstrings to hear about Joe's struggles. His honesty is so amazing and so real, Heather. Stay close to him and keep telling him how much you adore him. You are wonderful. Prayers and love, Christi Harman

Jeanette said...

Your presence for your boys and for Zoey is a gift to each of them. Being true to them, crying together is honest and will touch them deeply. Being super mom is not a reality, especially in this type of trial. I can only imagine what you are going through. And although I am a stranger, we are in continual prayer for you all.

Jessie said...

Oh my, you are such a good mom and don't let the enemy tell you differently - you are so right - the whole family is in crisis and you are still learning how to deal with it all....but you are learning and that is the mark of a great mom.

I wish I could meet Zoey - she does look and sound magical :o)

still praying...

Shari said...

I have a child very much like Joe. What he said to you tonight brought me to tears. We hear that often from our son. I hear you and can understand that part you are going thru with him. I know that things are very difficult and I hear you. I continue to pray everyday for each member of your family. For specifics that they each can be comforted and feel the peace they deserve. I pray Zoey gets well and is healing enough to come home soon. Your family is on my heart daily. Take care, Sweet Mama!

Kele said...

Ugh, it is so hard to hear the stuff about Joe, it makes me cry and my heart hurt so I can only imagine what YOU are going through.
Stay strong Heather, God will take care of this sweet family of yours, your Zoey and your Joe being front and center~
I know it seems helpless and hopeless in times like Saturday but it isn't, it will get better sweet friend.
I am praying for you and yours faithfully and feverishly!

Reagan Leigh said...

OK, I admit I'm a little nervous that I don't see a post from yesterday. I know you have your hands more than full and that you previously you never posted on a daily basis...but I'm hooked and I want to know everything that is happening with you and little miss Zoey. Heather, you are a WONDERFUL mom. Don't blame yourself for Joe acting's natural for a child who is stressed and missing their parents/sibling to act out! It's certainly by no fault of yours. Hang in there...things will get better! Sending lots of prayers your way!

Cleo said...

Everything is going to be OK ~ . I know everything will turn out for the best for all of you. I have tremendous faith in Zoey’s brave spirit and in LOVE, the most powerful HEALING FORCE there is.
Many Blessings to you ~

Sending prayers of strength, love and healing energy your way, every day ~

Love and peace ~

kristynewb said...

I am still praying for Zoey, you and your family. Zoey sounds so beautiful and she's so brave. It's amazing how resilient and strong they are in spite of all they go through. They have a way of renewing our strength with their smiles, kisses, and joy when we think we can't possibly have the strength to go on. You are so blessed to have such a strong, happy little girl. I wish she didn't have this fight and it breaks my heart for her and you.

And you do deserve a best mom award! I've gone through what you are going through, but with our only child (at the time). To handle all you are going through with Zoey and balancing other children at the same time would have to take a strong, dedicated, A++ mother.

Continuing to pray,


Jennifer Belt said...

We have never met, but I met your husband recently. He works with my husband, Jayson, at Chainsaw. I am praying for you & for your family. I also want to tell you that you are a GOOD MOM. No, a GREAT MOM. You love your children deeply & that makes you truly great. Your love is the best thing that you can give to them.

Kari said...

Your in my daily prayers.
Reading this really pulled at my heart. I think your an amazing Mom, that is doing her best at the worst time of her life!
I can't wait to see the new photos. Your little Zoey is such a sweetheart!

Carey said...

Hey there, getting a little worried about you guys. I'll check back in the morning.

psssttt, I'm planning something extra special for Miss Zoey, it might take longer than I though ... well worth the wait (I think!)

Sending all of our love and prayers!