Easy.

Loving this girl is easy.

Since her birth she has been simply a blessing and I'm not the only one who recognizes her as a lovely girl.

These pictures were taken this morning before church. She was decked out in her bathrobe, head turban and slippers. Her church dress was already on, though totally covered, and she was lounging on the couch in between fixing herself up in her small bathroom. Apparently this is how movie stars get ready for their days and she is currently fancying herself a diva of sorts.

Although she may not love having her pictures taken she is in trouble for she is currently my favorite subject to snap. Her smile is beautiful, no doubt. So anytime I become overwhelmed with how hard life continues to be, she is my centering. She makes it easy to focus on the beauty that still exists among the ashes we are walking through.

I received a gorgeous mosaic style cross in the mail recently. It is detailed and easy on the eyes. When you are at a distance you can see multiple colors and a bold red heart in the very center of it all. When you step closer you see that the heart is in fact small pieces that have been placed in the shape of a heart, although its obviously been made from broken pieces. The verse accompanying it is from Psalms 147:3

"He heals the broken hearted and binds up their wounds."

I love this verse because I know it to be true as it is Gods word. This is not merely a comfort or an encouragement to be passed around but this is a specific promise of what God will do. Because it is a promise I do find comfort and encouragement in it.

Just as I do with my Linley who continues to grow and relate and just make loving her so easy to do for me.

Hard.

Since Pipers death my moments of being sad and tearful are brief. While I may cry or allow myself to feel that ache in my heart multiple times a day there is inevitably something or someone who comes along and disrupts my train of thought. Usually I welcome this reprieve from the potentially steep decline into grief and allow myself to clamber out quickly.

But I cannot tell you how many times a day I hear my chirpy mommy voice talking about details of Linleys day while my mind remembers the way I struggled to kiss Piper little lips around the breathing tube. I will be eating lunch out and instead of following the conversation I will be missing the way Pipers cheek fit perfectly in the cup of my hand. Children make me tear up and for some reason they love me lately. Make up seems frivolous and food tastes only slightly better than cardboard.

My daughter is still gone and there is not a damn thing I can do about it.

Nothing is getting easier and in fact I am hurting more each day that passes.

Tonight Chad and I fought. Because it is us, it was a good fight filled with words and thrown pencils and hurt and anger. It was stupid, this fight, as they aways are and yet as I got in my car to leave I found myself hysterical. Sobbing so heavily that I had to pull over in the parking lot of a local church for fear of running off the side of the road even after 45 minutes straight of crying. And I realized that although I am hurt by Chad and I am mad at the way we continue to struggle with connecting and communicating, I really was just so very mad that so very much in my life is hard.

Marriage is hard.

Having your daughter die is hard.

Waking up in the morning and choosing to shower and put pretty earrings on and vacuum and do the dishes and drink coffee and do math facts and participate in the car pool and take a walk and plan dinner and meet up with friends and check your email and read books to 7 year olds and paint your toes and fill up the gas tank and make sure there are clean clothes for all who need them and watching Mad Men and blogging and breathing....

Over and over and over.

It's hard.

And I don't want to.


No, I want to stop this anguish.


And it's even more overwhelming to know that despite my best efforts at compartmentalizing, my grief and sadness are not fading but growing more difficult to handle instead. One can only wander Target so many times or meet up with friends for coffee so many times or drive with loud music pounding so many times before you realize that you are just about to burst and all in the way will see your core.


I wish grief were more like an exorcism. Where if I were to focus hard enough I would be able to spit it out on the floor and walk around it and right out the door. Purge myself of it, of you will. But it doesn't work like that... it goes on and on and on and on.


And it leaves me wondering how to deal with this huge gaping hole that Pipers death has left in my life. I truly do not know how to deal with the hard things in life because I'm still brought to my knees by just how very hard they continue to be.


My marriage is hard and hurting.

We deal with life in very different ways so it's no wonder we are dealing with death in our own styles. Chad allows himself to feel and question and be alone. I think a little too deeply and quickly rearrange the living room before the tears come. Chad rails and I simper. Chad goes as a slow pace through the day while I entrust my OCD to kick in and keep me racing.

With this thing called grief I see Chad allowing himself time. Time to cry or think or rant while I just want it all to go away. I want to busily avoid it when in reality, this depth of sadness only gets deeper when ignored. And despite how differently we are dealing with it we are both feeling it so much more than anyone else in our circle can imagine.

Most of all I allowed myself to have a five minute release which actually lasted over two hours and used up my normal yearly rate of tears. And it has changed nothing except serve to remind me that I am a hurting woman...that I am in a marriage that has been in the midst of a battle for 2 years and I am the mother to one daughter who needs me sober and upright and another who will never need me again.

This is why life is hard.

This is why I was not created for this.

Why I yearn for the eternity created for me and those whom also lean so heavily on my Jesus when life is hard.

Target (again)

So yesterday I may or may not have hypothetically sucker punched some poor local lady and her weary but good intentions.

Maybe. Hopefully not.

It began in Target as most of my stories do. I've mentioned before that it is my happy place, only now I must give the toddler and toy section a large berth to keep from being sick. There's still a whole lot of Target left to loiter through despite this detail. So I went. I needed a front door welcome mat and nothing else.

I spent 52$ and brought many other unnecessary treasures home but that's neither here or there.

When I was through thoroughly perusing as many aisles as I could handle I stepped in line to check out. Remember all those unnecessary but happy treasures I had discovered? Me too. I was in front of a young and frazzled mother although it took me a minute to notice anyone which is normal for me. I currently have the attention span of a gnat or a middle schooler in algebra or a grieving discombobulated mother. She was handling two kiddos who were not enjoying Target as it deserves to be enjoyed but I smiled at the mom because I have been there. Of yes, no judgement from me...I get frazzled.

When she caught my eye she smiled wearily and said "I look forward to shopping alone like you someday".

So truth be told she sucker punched me first.

I stood there a wee bit tongue tied and everything got real quiet in my head despite the kiddos screaming and I got a little numb. Then I stuttered, which is nothing new for me, something about it not being nearly as wonderful as she would think and turned around quickly.

From the corner of my eye I could see her face fall and I knew she must have sensed that I was on the verge because nothing else was said and no looks were exchanged and I paid quickly and got the heck out of there.

I made it to the car before the tears began and when I slammed my door I rested my head on my steering wheel and sobbed. I hate shopping alone and quietly. I hate having to miss my Piper and be expected to somehow breathe still. As the tears fell and my shoulders heaved I looked up just in time to see this poor lady settling her kiddos into her minivan... Which was directly in front of my Camry. And she was sliding me looks like she wanted to say something and she looked horrified and I am certain she will never, ever shop at Target again without fearing a meeting with this wreck of a mommy.


So thats how I flipped out again at Target and that's how I may or may not need to find a new happy place.

Memories and musings and no place for despair.

I've missed Piper a little extra today.

And by "a little extra" I mean that I am allowing myself to remember things that are both difficult and beautiful. Just like her little life was. And I am allowing myself to cry a little more than I usually do and I'm finding it to be good for me.

I'm often asked how my day is going and it's just not that easy. My days are fine...I'm sober and upright and frankly there are many moments that that even seems like too much. But I am.

It's the moments that catch me.

I'm fine.

I'm fine.

I'm fine....

And bam.

I'm walking down the stairs and remembering how many millions of times I held Pipers hands and took steps slowly with her and praised her her desire to be such a big girl.

Moments hurt.

The days and nights are too big to handle in theory and so I continue to just do the moments. Thankfully Pipers life, while difficult no doubt, was filled with beauty. She was a blessing to us in every single little way and her absence is a glaring void in my life.

Imagine losing a child.

Some of you have and my memories and musings scrap off the scabs of your own loss. Most of you haven't and while you fear and possibly fret over the possibility, fact is you will probably walk to Jesus long before your children.

As it should be.

But some of us are left to maneuver the living room when your minds eye remembered your two year old walking towards you with pride in her eyes, you shower quietly and wish you could hear your daughter plead to join you. You have to daily, sometimes hourly, remind yourself to not say "daughters" but instead to put your "daughter" in bed. When someone knocks on the door there is no sharp intake of excited breathe and the swift hustle of a toddler hauling herself to see who is visiting.

Pipers memories are everywhere. And on the brief moments that I relish the breeze and the sound of Linley playing and think to myself how good life is... there is the inevitable sucker punch of reality and the knowledge that Piper is gone. Never to return to my arms or my stairs or my living room or my shower or my bedtime routine.

That's a moment that hurts.

So imagine not having that child next to you. Today when going about your to-do list allow yourself to have no responsibility for one of your children. Make yourself think how horrible it would be to kiss them goodbye and never ever kiss them hello again, this side of eternity.

And when you feel like you cannot breathe for how heavy this feels on your parental soul, I want you to have the moment that relieves this ache because you do still have your beautiful daughter or strong son. I don't have this relief and I do have much sadness.

There is a verse that has soothed me since Pipers death. Each time I feel overwhelmed or hurt or angry, I force myself to refocus my emotions around the pit that is called Despair. If I despair I lose hope and if I lose hope I lose my foundation for survival. I just can't do that and make the struggles of the last two and a half year seem in vain.

So I rail and I cry and I sit quietly in each moment that comes. But I do not despair...eternity is sweeter with Piper leading the way for us all.

Psalms 27:13
I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living.

St Simons Island 2012

First vacation as a family of 3.

Felt a bit fuzzy and a whole lot of surreal. The struggle to keep myself moving (albeit slowly and sadly at moments) along is very real unfortunately. Baby steps, I'm told.

And still we had a good time. Linley tried and liked fried calamari and butter pecan french toast. We swam often. There were piers to walk and lighthouses to climb and bike trails to explore. My Linley is a joy to be around and I noticed her sweet demeanor accentuated. She has always been my independent little one and she is not typically a touchy girl... Have I mentioned that she is very much like her mother?

She is.

But on this vacation we noticed her reaching for my hand when walking along. Linley was content to cuddle up with us and watch television. She never asked me to stop touching her fuzzy head or stroke her face and I truly think she just knew mommy needed a little extra of her. I also think that Linley just needed a little extra of me and Chad.

While I know how much my girls adored each other, Linley was very often gently nudged out of the way. All of her needs were met but too often her wants went overlooked...and while I know this may not seem like the end of the world, it's not really fair to have this be the normal for over two years.

This vacation, while having its share of tears and sadness, was a time to refocus on Linley. She's now an only child and this was never my intention when I first began bearing children. But instead of thinking on the whys and how's of the past few years we chose to hope and plan for a future.

Linley is worth it.

This vacation was a wonderful reminder of who we each are to each other... A family.

I love you Linley.
And I miss you Piper.

3:35 am

There was a little irony in being awoken this morning at such a time. If I were to be a little more awake or lucid I imagine I could count down the hours it's been since Piper died.

I'm not so I won't.


The room is hot and my spouse is sound asleep. I know this by the snoring from the other side of Linley...who is on me like white on rice. She sleeps with her arms flung across my chest and her fuzzy head in my neck. Not unlike Piper did.


I am missing Piper.

Right now.

Too many nights that I've been given the option to sleep through and truly, I'm no good at that. I miss hearing her little voice in the night needing me. And I miss feeling her arms and her fuzzy head. God, the ache to hold her again could kill me if I allowed myself to fully feel it.

I cant so it won't.

Today I told Patsy down at the pool that my daughter died. I teared up a little but muddled through an explanation. I told her Piper had died a week from Tuesday and she responded how she was supposed to. I think the more politically correct thing would have been to say that I "lost" Piper but I didn't. She died. I couldn't have lost Piper if I had wanted to... That girl was with me all the time.


In my arms.

Walking next to me with her pink walker.

In the backseat of my Camry, singing Adele.

Snuggled under my chin and across my chest.

I didn't lose Piper.

She died.

Dying also allows me to focus on where she is now. Were I to have lost Piper I would be spending every moment of my remaining years seeking her out. But I don't have to do that. She's gone from my arms but she's settled into better ones. And while that doesn't stop me from reaching for her at 3:35am, it keeps me from collapsing in a puddle of grief from missing her.

Piper died.

I miss my daughter.

3:35am is a lonely time of the night.

One week today.

It's one week today.

I have yet to have the major emotional meltdown that I thought I would have had. And surely can deserve. Perhaps it's that I have little time. Perhaps it's that I have a seven year old who keeps me busy. Perhaps it's because I tend to compartmentalize things to an extreme and there simply is no proper place for hysteria when one needs to keep their life as orderly as possible.

I think I am feeling this loss in an odd way...One minute I am planning out a vacation to do list with my spouse and the next I am curled up around Pipers no longer necessary carseat and weeping. One minute I am watching Linley cannonball into the pool and the next I am throwing my whole self into the water in an attempt to not miss holding Pipers wiggly two year old self. And when we are asked if we need seating for "just three" I want to stop that person and explain why...although I have yet to begin to ask God why and am only able to survive by necessity. I can do this.

But I'm not sure how much longer.

Last night was so very fitful. I woke no less that 6 times just to look at the clock and reorient myself. When I finally woke for the day it was with the biggest sense of dread I have ever felt. I was certain I was full of lead as I drug my weary body from the bed and pasted a smile on my face for the family waiting for me in the kitchen. And the day has just gone on and on...pleasantly but still with that sense of dread and sadness that I cannot either shake nor deal with correctly.

Its this ability to compartmentalize things that has allowed me to cope with the past two and a half years. Some may call it OCD, some particular, and others will just smile and understand my need to keep as much control over as much as I can at all times. My child has chemo in the morning? Let's clean out the fridge. Tomorrow we move out of state? Let's paint a dresser. I realize I will never hear my youngest ever call me "mommy" again? Let's paint my toes.

I just cannot always deal with the weightieness of what has encompassed my life. I cannot do it. So I continue to deal with the little things around my house and with Linleys life and at one point I would have spent more time packing Pipers diaper bag with things to do for a whole day in clinic than I would even have allowed myself to think about why we were even going to be there.

Compartmentalize. Organize. Redirecting my emotions and plans. This is how I am coping. How I have coped for the past two and a half years. I am planning to force myself to remember and mourn and ache for the details revolving Piper and her sweet little life when Linley begins school again. When I can freely weep and possibly yell and most definitely miss her. Perhaps losing control, even a little, will help this process. Perhaps.

Until then I will keep my eyes from excessive pictures of Piper. I will only smile when her name comes up. And I will compartmentalize the details that I miss and throw myself into today.

And yes. I pray often.

Today I was praying while laying on the beach and I found myself asking the Lord for big signs of his love for me. For him to bless me with this or that or the next thing. And it dawned on me that what I really need is more of Him. Lots of Him. I need to be flooded with Him in order to not be flooded with fears and dismay... That while I begin the grieving process that I also begin the process of finding out more of the God who has carried me for the last few years. I want to know Him and love Him and then know Him more.

One week today. A lifetime left for me to miss Piper and learn to love this big God more. A lifetime seems too much.

For missing Piper, not loving God.

Never.

Unfair

We rolled into Athens about 3:00am on Friday morning. Up early a mere few hours later and then I promptly lied my way through 75% of the retail stores in town.

Looking for a dress for myself.

For my daughters funeral.

I answered "yes" when asked if I were having a good day. I smiled when forced to make eye contact. And I somehow managed to say that I was indeed doing okay when in actuality I was fairly numb and a little disoriented.

Thankfully I saw no one I knew.

I'm certain I would never have held it together if I saw pity on anyone's face. I found a lot of comfort in the anonymity I had throughout the day. I survived while going about my errands and found something I deemed appropriate for something that I never wanted to do. Unfair comes to mind.

So that day passed and Chad and I attempted to keep ourselves together while still allowing Linley to see us hurt. She is tough...more tough that I wish she were. I fear she is like me as she speaks little of her feelings and redirects questions about her thoughts and such...I pray she will allow herself to cry soon because I am willing to cry alongside her sweet, strong self.

Pipers Celebration of Life service was beautiful. Our desire was to both recognize the fabulousness of Pipers shirt life and to point towards the great Hope we have. And we do. I cannot fathom the depths of despair I would feel if not for the knowledge that eternity will enable me told hold my Piper again. And again and again.

Each moment that goes by without Piper can be either difficult or filled with with this severe numbness I need to keep moving. Memories abound as we settle back into our home. Her play kitchen is sitting unused in the corner and her stuffed animals are collecting dust. When I peruse notebooks or coloring books on the counter I am struck with little scribbles she made for me. My cabinets are filled with the specific snacks Piper liked and the bowls and sippy cups she would go and retrieve when we prepped for dinner. And it's so quiet. Too quiet for my soul...not only are my arms empty but my ears ring when the quiet permeates.

Again. Unfair comes to mind.

And when I say unfair I mean it. This entire process is painful and unfair. I'm sorely disappointed that this is how Pipers story has gone and yet I am so blessed to know that God is not phased in the least bit by my disappointments. Oh, I do believe that He cares and that He loves me and hurts with me but I also believe that He wants me to be totally honest with Him...not that He doesn't see my heart and love me anyways. He loves me as I love Piper.

Fervently and sincerely.

Pipers Celebration of Life

Pipers Celebration of Life service will be this Saturday the 7th of April, 2012,
11am eastern time.

The service will be held at
Redeemer Presbyterian
165 Pulaski Street
Athens, GA 30601

It is open to all. There will be a reception immediately following the service and we look forward to seeing all of you who have so wonderfully supported our family and loved our girl.

Please remember that while we mourn not holding Piper in our arms anymore we are rejoicing that she is well and strong and happy and in better arms than we can provide. Because of this we want this to be a fairly casual celebration service. Do not feel you must arrive in dark colors and and do not feel you must worry about how we will handle talking about her.

We are asking in lieu of flowers that you support CURE Childhood Cancer in Atlanta in honor of Piper Jean.

Grief

I never knew that grief was so fluid.

That it would absorb my every fiber.

That one minute I would be shopping for toothbrushes at Target and the next I would be leaning against the wall, struggling to breathe deeply. That I would be absorbed in a dinner with the family and suddenly remember the warmth of her skin and find myself staring off into the traffic passing us by. That my arms, which have either caressed a swollen belly or held a needy little girl for three years, will feel empty by my side. And that when this grief begins to wash over me that I must brace myself for fear of falling with the weight of it and never getting back up...

Never.

Content to just lie prostate and weep.

Oh this grief hurts like I had never allowed my weary self to imagine. When Piper was first diagnosed I remember thinking that I would either spend the rest of my life worrying or the rest of my life grieving...

And here I am. Grieving.

I so wish I were worrying...I can fix worrying with the sweet smile of the best two year old out there. I could throw parenting rules into the wind and pull Piper into bed with me at midnight to smell her throughout my night. I could count her toes and kiss her fingertips. Her steady breathe could easily help me to focus...on the now.

Not grief. Grief numbs you. And when you spend the majority of your day staying as busy as possible, with this blessed numbness you are okay. But at some point another wave comes...and grief once again fills you to capacity and leaves you gasping for air or hope or some sort of lifeline. And once you feel as though you may never breathe deeply again you are drained into that numbness that allows you to walk. And eat. And shower. And smile. And be.

I wish I was worrying. I wish I was not simultaneously missing the child I raised and grieving the young lady I will never get to know. I wish grief was not an option but I know it is...it's a necessary step to relearning my life and to loving the husband who stands by his weeping wife and the seven year old who needs her mothers adoration.

I must learn to grieve properly so that I can live properly. I cannot allow myself to remain numb, however easy it may be, when it only keeps the waves from toppling me for a minute. When the minute is done being delayed I will once again feel my fingers tingle and my heart seize and my ears burn and every single fiber of my physical and mental and emotional self will go under the wave that grief brings. I've heard that time helps... I imagine that I will know this to be true or false on the days, months and years to come.

But right now...thirty two hours after last seeing the blue of Pipers eyes and feeling the squeeze of her hands, I simply grieve her loss. I simply miss being her mommy and I sob for it.

Piper Jean

"The Lord gave and the Lord has taken away; blessed be the name of the Lord.". (Job 1:21b)

Piper Jean Needham ran into the arms of Jesus April 3, 2012 3:35pm.

Our hearts and empty hands hurt more than we ever imagined possible...but Gods grace will continue to carry us. He will no more forget us in this time of grief and sorrow than we will forget how much we love our fabulously spunky Piper...


And we do love you, Piper Jean.

Update 4/2/12

I'm typing this with my left hand... My right hand is filled with the sweet warmth of Piper. I cannot seem to break apart from her so long as she breathes the short breathes the oscillator allows. She will squeeze my fingers at times or nod her head when asked a question she likes, such as " do you know we love you?" and will shake her head "no" when we ask her if she is wonderful... Because my spunky girl prefers to be called "fabulous" or "amazing". Both which she is so I shower her with these true confidences.


Pipers room is filled with family and friends who love her. We pray over her. There is worship music playing and the truths of God flood us. Despite the grief I cannot wish away, knowing that the words I hum along with are constant brings the sweetest peace I have ever experienced in my life.

Our room here at St. Jude looks out over the main entrance. When I feel my heart seize up, as it does at times, I walk to the window and watch the families and patients walking to the door. Some skip and some trudge and everyone is comprehensive of what battles are fought here daily. I have seen fellow infant leukemia fighters Wesson, Matthew and Phoebe and I plead for their sweet miracles...knowing they are in the very best place for one.

I last heard that our St. Baldricks event raised over $16,00. This is amazing and a wonderful encouragement to me as I sit with Piper. I would never wish this pain on any other mother and with this money raised we are trending closer to funding cures and treatments for pediatric cancers. That would be a balm to my blistered heart if anything could.

So we continue to wait. Feeling Piper and her soft self, so unlike the girl in the past and yet still fabulously alive. I find myself sitting with her and crying while smiling. Praising while pleading. Lovingly letting my daughter loose into the arms of the only One who can possibly love her more than I have.

Update 3/31/12 (pt 2)

Pipers blast are now at 90%. She no longer is peeing much, signifying her kidneys shutting down. Her abdomen is huge...filled with her leukemia swollen liver and spleen. With the help of the oscillator she continues to breathe and fight.

We asked outright today what were her chances of survival and were told nearly zero...barring a miracle. Her organs cannot tolerate the chemotherapy necessary to combat this magnitude of leukemia. A transplant is not an option and Piper will not live much longer.

We met with a quality of life doctor today to speak about our wishes...more choices that we are forced to make. Emotions run high and tears are flowing. Disbelief courses through me...I truly hoped my Piper would be the one to defy the horrible odds stack against her.

Our nurse tonight lost her own daughter to cerebral palsy 11years go. To say she is compassionate would be a gross understatement...she has finagled Piper and the multitude of lines she needs in a way that enabled me to crawl up here with her in her bed. And that is where I have been for the past 2 hours...cuddling and kissing on my youngest daughter. Chad leans across my body to touch Piper and we silently cry so as not to frighten her. I will stay here as long as I am able. Whispering that I love her, adore her and am so very proud of her. Singing every song I can think of and a few I am making up. Stroking the smoothness of her head and the taut skin across her arms and legs...each limb is being cemented in my memory and each contour is beautiful despite it's wear. She is beautiful...I can still say this with conviction.

My Piper radiates beauty and hope and simple love. If I already miss her, while she lays warm against my arm and with her fingers clasping mine, how much more I will miss her when she goes and I cannot reach her at all.

Praising the Lord that where she is going, I will be as well someday. That Piper will feel no pain and will simply blink before she sees me walking towards her... Eternity will be sweet when I see my girl well and our family is together again.


What a beautiful someday.