Thursday, May 14, 2009

Finding Our Way ...

The days are going at warp speed in some moments and in other moments so very painfully slow.Painful to my heart mostly.I find myself frantically trying to "fix" everyone.Comfort everyone.Bring joy to everyone.Much to my dismay I fail on all fronts.Seriously,who the heck do I think I am?Egotisticly thinking am able to take this away from everyone,be it a parent or most especially a patient,hardly.But I continue to try because I quite frankly do not know what else to do.The stories on the 4th seem to be converging in a strange circular kind of way.Zoey and I are surrounded by some of our very favorite people up there.Each one,battling and fighting and battling some more.These children and their families are my hero's.My courage.My strength.They bless me and remind me of purpose and plan.And since fixing and repairing and waving my magic wand seem to be futile .... I pray instead.As I leave CHLA on my nights off,I barely make it out of the parking garage before I break down.I manage to keep it together and run on autopilot most all day long but as soon as I am alone ... it is all over.The events of the day are replayed over and over in my head and my helplessness and inability to fix this "thing" for everyone is absolutely overpowering.So I pray and that is all that seems to work.And then I pray some more.I will continue that tactic, as it seems to yield far better results than my superwoman complex could ever accomplish.I was reminded by a sweet friend's email tonight,to not spread myself too thin.I fear that is advice that comes a bit too late.I am not merely thin,I am paper thin.Only mode I tend operate in.To my friend,thank you for being just that ... my friend.I am lost without that support.Pray for my little love,her warrior friends and perhaps,for good measure,one for me.I am on the edge ... again and I would prefer to not have to use my wings.The arms are tired once more and the mind is mush and the heart is heavy.I am needing to dig into my reserves to sustain me for the duration and it is absolutely,positively exhausting.Speaking of which,12:45 am .... time for me to turn in.Thank you once again for your steadfast friendships and your loving prayers.all of which never go unnoticed.

* Miss Zoey is TIRED.Tired but darn cute.Her white is .3 folks which is well,practically zero and not conducive to fighting off infection.Her platelets are getting eaten up again, even after the transfusion and her ANC is so low that they can't even calculate it.This is all expected and expected is manageable.Manageable I can handle,it is the unexpected that I just can't handle in my fragile state.Not the most flattering pictures of Miss Z,she was busy looking everywhere except the camera but this picture is more about her two buddies rather than her.Zoey's two friends in the picture are Jayden,our round 3 roommate and as luck would have it, our roommate now as well.We couldn't be happier.The other sweet child is 10 year old Klein.Klein is one of those old souls with the most caring and compassionate hearts.Klein is in need of some serious,serious prayers.His road has been hard already and his journey is nowhere close to being over.Pray hard for this guy.He is remarkable.Truly remarkable.


stephanie said...

Good morning, friend. It's time to take care of Heather.I do believe you have OCD, of the sweetest kind.You want to take care of everyone and seeing the pics of their beautiful faces I can understand.It must be nearly impossible to not loose your heart to them daily.BUT,you need to stay strong.Wave your magic wand over yourself for a while, (just a little while, don't want you to spoil yourself).But, seriously please take care,stay strong out on the front lines,and as always, extra love and prayers to all.

Karen Owens said...

Oh Heather -- looking at your own child ill is so difficult but then place yourself in a sea of sick children, sorrow and loss -- it can be totally overwhelming.

I go through waves of "Why us" to "why them" to "God, what are you doing" to "thank you for our glimmer of hope." It's all very exausting!

Hang in there -- Zoey is such a doll!

mommaof4wife2r said...

love and many, many prayers to you! zoey and herself is just precious!!!

Reagan Leigh said...

Zoey is so cute in those little striped pjs!! Hang in there Heather! You're at the finish line. You are in my prayers as well...that God will give you the strength you need to push through this! Lots of love,

Jamie said...

I know my Madie is in a different situation than Zoey...but I can tell you this that the feelings of helplesness are very much the same.. reminding me of the days after madies steroids and we were one month seizure free thinking that this journey was over..then come Jan (at a late family Christmas party!) her seizures had returned to Infantile Spasms..lil did we know this Journey was far from over...I look at where my madie has come since then and her lil personality slowly surfacing thru...over a year later! Seizures are so much better but we still have a journey ahead...and I have those day...asking God where my break is...where madies break is!!
MANY hugs to lil Zoey this sweet lil soul who has touched my heart.
Take Care of YOU..A nice dinner with my husband always brings me up.
Ill jump on that soap box with Stephanie. ;)

Lacey said...

I can totally picture you walking around that floor, trying to make everyone smile and everyone happy. You definitly need some Heather time. You are almost done, just a little longer. Even though you are stuck up there you continue to raise my spirits as well and you are always there, I can't thank you enough.
Zoey definitly looks pale, but also beautiful. I pray that life on the 4th floor is uneventful for you, and you get some rest. We love you and Zoey girl :)
I'm going to get my doctor to write a referal. I know he will, he may be out of ideas but I know he doesn't care who we go see.

Anonymous said...

Zoey you are looking sweet as always. Perhaps not quite the sparkle you usually have, but still sweet, sweet.
Heather - please take care of Heather. Hopefully Zoey's counts will soon be up and The Needhams will be together at home. It is indeed sad to hear of sooooo many little ones fighting, fighting -

Take care


Anonymous said...

Zoey looks beautiful. Enjoy seeing her friends pictures too. She does so well surrounded by people (kids). :) Thinking of you every day, linking together prayerful moments. Good to hear what is going on is "expected." It's ok to care for your kindred spirits Heather, how could we do otherwise? Love to you all, xo Christi Harman

Junior said...

Keeping you all in our prayers. Your little warrior inspires us all, beautiful pictures.

The VW's said...

Praying for you and Miss Zoey! Hang in there awhile longer! Try to take care of yourself too! HUGS!

Tammy said...

That email was right. You must not spread yourself too then. You must take care not to wind up crashing yourself.

Trust me, the crashing? It ain't pretty. Or fun.

I love how your heart yearns to make everything all better for everyone. But that's a mighty big order for one Mama to fill.

Zoey looks wonderful. Adorable as always. She's ever in our prayers.

Tammy and Parker

sturpin said...

Heather, I too am a "fixer." And right now I wish I could fix you. To add strength and endurance for all that you do and see each day. Love and prayers being sent, hon.

The Hearnes said...

Hello Heather,

Thank you so much for your sweet message. I've been following your blog since late last year, and I'm clearly starting to see the light; it is a brilliant light that leads to a finish line for our Miss Zoey! Our prayers are steadfast for the entire Needham family; your summer 2009 will be traveled with an abundance of insight that your time at CHLA has gifted you with.

Hang in there... You're almost there.

Our prayers will never cease,
Tish, Bob, Lauren and Paul

Mo said...

Keeping you all in my prayers - for healing and peace.

scrappy quilter said...

Aw Heather, I wish there was a way we could carry some of these burdens for you. We can't, however our sweet Savior can. Praying for Zoey, however also praying for you that you can give all these cares over to Him and leave them at His feet. Please take care of yourself okay. Sending BIG hugs your way. It's not an easy walk your walking.

Michelle said...

That is why I LOVE always put everyone else give so much of are what so many people out there should be. But, my friend...take time for YOU. You cannot give, what you don't have. Don't drain yourself, don't go too long and find yourself completely empty. Oh how I wish I lived closer...I would whisk you away, take you out for a nice walk along the beach or to a great show, or musical (I know how you LOVE music)...oh how I wish. But I can take your mind 'off' things for a few hours in ONLY a couple of days my friend. I will call you tomorrow, Friday to find out if I can still come see you and find out when, where, etc. I'll call tomorrow! Until you my friend.

Monica said...

You are a beautiful mother Heather.

Heavenly Father, we humbly beseech Your mercy. We pray that You take the hand of every parent caring for a sick or disabled child. Even though we understand that You don’t give any of us a burden we cannot bear, Lord, sometimes the road seems long and the journey arduous. Be with us, O Lord, and strengthen us as You did those who came before us. We call on Your name for our daily bread—for the medicines, care and support we so desperately need to fulfill our responsibilities as good parents.

We ask not for ourselves, but for the sake of our children, who depend on us just as we depend on Your grace and unfailing love.

The Lord will help them when they are sick and restore them to health. Psalm 41:3

Help me Jesus
Know Your ways
Through the night
Through the days
Give me love
To show a friend
You’re always there
You never end.

Hang in there Heather!

My name is Sarah said...

Miss Zoey, The Girl in the Striped Pajamas, brave little soul with the dearest mommy ever. Hugs and kisses from me - Sarah.

Judy said...

Heather~ You can't do this alone but He will give you strength to press on. Lean on Him.

Zoey looks beautiful. I can't help but smile and tear up every time I see a picture of her. She is so full of life and love.

I am praying for you, my friend!!

Googsmom said...

Continued Prayers and {{{BIG HUGS}}}}