Thursday, December 5, 2013

.




  Tonight we set up our Christmas tree. Chad strung the lights. Linley hung the few ornaments we have pulled together from friends and family and small budgets. Beck attempted to eat everything in his quick little path...and I watched. I watched through fogginess...through deliberate gratefulness and such large doses of sadness that my bones feel weak and my chest will pull unaturally. If you were to sit with me now on my couch in the dark hours, curled up and sobbing, you would see no evidence of the girl I gave birth to. No ornaments. No stockings. No artwork...simply nothing. She is gone in every sense of the word.

  Sweet eternity...she is there. I am not. 

  I miss my daughter. 

  This is the second tree we have chosen without her help. The second year where I have no need to look at what little girls would desire to see under the tree and no need to buy matching nightgowns for sisters who are both similar as well as vastly unique. No need...I miss that need. This year I am slyly being passed Christmas lists filled with rainbow looms and kindles and tiaras and I am prepared to walk through the little fellow section at Target...a few short aisles from the ones I once wandered. She is gone. She no longer has desires that this mommy can fulfill. She dances and is whole and waits for me.

  In the light of the day, I can categorize my grief. I can chant in my mind all the truths that I lean on so. I can read the encouragement of friends and scholars and preachers and be reminded that others have carried this and that I too, can. In the day I can have busy hands and hurried feet and plans and schedules and little ones with needs and spouses who are grieving and giving in and in those moments I have no space for myself. There is no compartment...I deliberately fill each up.

  But then the night comes and I am not so much tired as I am weary and my mind cannot block the memories that can both draw a smile and a sob. Over the rumbles of the man on the other side of my bed and yet miles away, I fight the noises that begin to rise in me and I swiftly find my way to the quiet couch. All the words and phrases my mind presses away in the day will come tumbling out and I will feel them pour down my cheeks. I will feel the enormity of what this life will feel like sans Piper.  And I will taste these tears and I will write the words that both choke and free and I will allow myself this. 


  I have learned quickly that grief is both what you feel and what you feel you must not give time to. 

 

Tuesday, September 24, 2013

Piper/Chicagonow.com/sleep/being kept loved and loving


  Little man Beck is 4 and a half months old. 

He's a whole lot of awesomeness but that's not the point to this post.  

Today, Beck chose to wake up at 1:30am, 3:00am, 5:00am and 6:00am. He didn't always want a bottle but always wanted me. And this made me a very tired mommy by the time my alarm went off at 6:50. I was able to put a smile on my face, surround the little man with pillows (since he finally wanted to sleep) and begin the process of getting Linley ready for school.  

I successfully got the girl to school and mentally cheered myself on for wearing pants to the carpool drop off.

And then I used an old gift card from Starbucks for a Pumpkin Spice Latte. And then I went to Bible Study, though a nap sounded better, and promptly drank 3 cups of coffee. And then I made it home exhausted and tried to lay Beck down for a nap, hoping and wishing I could squeeze a little one in myself before leaving to pick up Linley...

And that little nap he took was exactly 7 minutes.

Nobody feels rested after 7 minutes of shut eye.

So I chose to pick up my firstborn son and rock him and sing to him. I tried all the mommy tricks and finally just settled into the couch with a bottle and a blanket and the choice to seize the moment and try to remember to nap when I get old and the kids are off with their own kiddos and life will be simple.

(Maybe?)

For thirty minutes I cuddled that sweet little fellow. He slowly and sleepily drank his bottle and played with my fingers. His head was soft under my chin and his chest rose and fell steadily and contentedly as he had what his little self wanted when he laid in my arms. His warm body was especially sweet to me in that tired moment...I wasn't sure why but I found myself thanking God for allowing me to stay in the moment. To enjoy. To love. To be.

A few short minutes after I had finished his bottle, I was checking Facebook and cleaning up spit up (always) and tickling Beck and watching him roll over and trying not to fall asleep on the job when I realized that Pipers story was published today. 

She was one of 28 children chosen to bring awareness by their diagnosis and life to Childhood Cancer month. Mary Tyler Mom, over at chicagonow.com, had allowed me to share a tiny little bit of my girl...and can I tell you it took me over 6 months to write a 1000 word essay? Nothing easy about writing about death. Or tenuous lives. Or aches that grow or little girls who won't.

  I was blessed to lumber through this and even though I have read and re-read my words a million times since submitting them last month, I laid myself back on the carpet and I sobbed.

  Next to Beck and his giggles and spit up, I sobbed and snotted.

It's been seventeen months since Piper was warm next to me. I have since carried a son and delivered him and begun the process of raising him. I have held Linley and wept for what she misses and missed and will never be able to fully understand had happened to her world.  And yet, I can count on one shaking hand the times I have allowed myself to lose myself in the hysteria and ache of losing Piper. 

Each day is painful. Each reminder a kick in the gut. 

But it's these few times of losing the strength to sit up, when my mouth forms words I cannot even speak and my heart feels like it truly has cracked in two..those are the moments I most feel how significant my life has changed.


It's also the moments I most ache for my God...for eternity...for what I was created to desire.

  So today when I chose to keep moving my weary mommy body is when I chose to accept Beck and his desire to be close to me.  When I chose to not see him as a burden is when I was able to honor Piper. When I remembered how easy it is to be worn down by my role is when I was able to keep moving and loving and then when I remembered the days I truly should have fallen apart but didn't. 

  I'm thankful that God kept me today. 

  Kept me focused. Kept me on my knees. Kept me prioritized. Kept me loved and loving.



(I have no clue how to link Pipers article up...I do know to suggest a good old fashioned google search of Mary Tyler Mom, chicagonow.com and Piper Jean.) 


Thursday, August 29, 2013

Beauty in the struggle.

Tonight I came across a picture of myself, Linley and Piper from St. Jude's...and I smiled while I wept while I grieved while I chose, once again, to be joyful.

And it struck me as I was remembering the exhaustion and fear and worry that raising and treating a child with cancer brings, it struck me that those were such beautiful moments. Moments that I struggled to smile for Piper while scratching her back for hours. Moments that I encouraged Linley to join myself and Piper in our tiny little room to play and be silly. Moments when I just wanted to curl up in a corner and shut down...to hide in the shower...to run screaming down the halls in a panic because THIS WAS MY LIFE and IT WAS HARD.

So hard, my friends.

But I didn't. Gods grace kept me moving. He rested my soul when I was living on 3 hours of sleep a night. He gave
me a peace when I walked out of that hospital to join Linley and leave Piper for the night. He focused my attentions not on the depths of despair that I so wanted to fall into and wrap myself up in and give way to...my God kept me.

I am thankful that even now, more than a year since Piper left this world, that He continues to show his nature to me...that tonight while just browsing pictures he showed me the beauty in a season I lump together sometimes as simply ugly. That sometimes when I am overwhelm with what he required of me, I forget that He was making moments that were beautiful.

And I would be a fool to not use this reminder in my little life today. No struggle I wrangle with will not blessed with an aspect of beauty if I allow myself to trust the author. I have to. I must. I am thankful that God continues to teach me...that Pipers life was not meaningless and that our struggles were not minuscule.

There was beauty. She was beautiful and my God will remind me of this when I fail to chose joy.

The picture is from less than a month before Piper died. And the song is one that has rattled me and resounded in my soul more deeply than I ever have been rattled.

http://youtu.be/qyUPz6_TciY

(Shane and Shane "though you slay me" featuring John Piper)

Monday, August 26, 2013

3rd grade

How can it be? How could this little lady be the same little baby that I once rocked to sleep and read stories to? Her legs will soon match my own and she is the one who reads aloud at bedtime these days.

Third Grade is one step closer to independence. I think of this often as I raise Linley Coe...she is such a joy to have in my life and I am thankful to have the role of mother as I rear her as best I can with Gods sweet grace as foundation.

This year I am praying for her friendships. She is at the age where her peers are so important and I pray that she is as good a friend to them as she would want them to be to her. I pray that she continues to gain confidence. That she finally gets those math facts ingrained. That she learns to focus without losing her incredible imagination. That she continues to trust God in the little things because he shown himself faithful in her little life in the big things...I pray she can remember that.

I love you sweet girl. You've got this.






Goodbye summer

Linley and I wrote out a "bucket list" for this summer. Of course, with a newborn, I would have been totally contented to stay home and watch Beck while I played games with Linley but she is infinitely more social than her mommy.

And so...that is how we took our little crew into Atlanta to the World of Coca-Cola for the day. We had hoped to walk to Centennial Park across the street to play in the water fountains and have a picnic but this summer the rain rivaled Seattle and we settled on BBQ and a movie in bed.

This was do much fun. Beck was happy, Chad had fun exploring Linley and I'm just happy anywhere with my family.













3 months

I believe it has been established that my boy Beck is an amazing little fellow. At three months he has leaned how to roll from his tummy to his back. He loves to sit in his Bumbo chair and watch his family eat dinner. He loves going in the pool and kicking his legs and arms. He loves humming while sucking on his fingers, just like Piper did and he loves to watch people, just like Linley did and does. He has discovered his hands and discovered that he can bring objects to him mouth if he works real hard.

Like I said on Facebook a few days ago, "this boy loves everything"...but he does not dig waiting for bottles or being tired. He seriously gets ticked off when he is tired and fights himself from sleeping at nap time each time. Strangely, he never fights bedtime and we simply lay him in his bassinet about 9:30 and he dozes off with no help or fuss.

He sleeps from 9:30 ish to 4:30 ish, wakes for a bottle and falls back to sleep until about 8:00 or whenever I have to wake him to take sister to school. He is still drinking a 6 oz bottle every four hours during the day and he still smiles and laughs at anything and everything.


And although I am late posting this, the picture is from August 6 so I am at least getting that part on schedule...enjoy!

Wednesday, July 17, 2013

2 months (or so)

I'm slacking.

I've got the whole "two kids, don't shower, just keep moving" thing down again but blogging nor picture taking rarely makes its way onto my to-do list.

Kissing on sweet cheeks does
Listening to made up stories does
Discovering new smiley dimples does
Painting pink toes does
Braiding slowly growing hair does
Hearing early morning coos does
Holding soft hands does
Watching confident swimmers does
Cuddling snugly sons does
Feeling bedtime nostalgia does
Thanking God for simplicity does

This summer is flying by. Beck went recently to his 2 month check up and all is well (ish). His spitting up combined with his lack of big weight gain had us at the hospital to rule out pyloric stenosis. That was a wee bit nerve racking but all is clear and Beck continues to be the happiest and most contented kid out there...our days are spent smiling, then spitting, then smiling, then spitting and so on...we go back at 3 months to re-check weight.

He weighed in at 9lbs 12 oz and 23 inches long. He eats a 4 or 5 oz bottle every 4 hours though I'm certain he spits a good portion back up. He is currently sleeping a solid and consistent 8 or 9 hours at night and has a routine of bottle, play then nap that cycles through the day. He prefers to nap in the midst of activity but that's no surprise as he has spent the last two months doing anything and everything that Linley does.

And the boy laughs...

There is no sweeter sound that a baby who laughs and there is no sweeter face than the baby who wonders where that sound came from.

He lights up with Linley around and has been known to fight napping for me only to fall asleep in Linleys arms as she successfully transfers him to his crib. He loves to sleep on his tummy but not at night. He loves his pacifier but not when going to bed at night. And he loves have a blanket up to his cheek and fiddling in his hand as he drifts off...just like his sisters.

Still a joy. Still thankful.

Wednesday, July 10, 2013

...and here's to 9 more years.

9 years of marriage

8 pack it all up and moves

7 pets of varying types

6 vehicles plus a work truck

5 months spent separated

4 months spent renovating a home

3 children born in Gods timing

2 years spent battling cancer

1 death of a sweet daughter

1/2 (+ a little bit) of a bachelors degree for the Mr.

Here's to the first 9 years. You've driven me nuts and you've calmed my fears. You've hurt me and you've healed me. You watched me bring our children into the world and you help me hold one as she left this world. You've sold your belongings to make ends meet, hung 4729226 decorative things on the walls of our home and you rave about my cooking, only requesting I never make squash casserole again.


One shouldn't enter marriage assuming it shall be easy or simple. After 9 years of commitment to you, I am simply thankful that you are as damaged, sinful, flawed and broken as I am...and that God is the only reason we will continue together to walk a few steps forward and a few steps back in this marriage. Somehow we are growing and learning and perfecting this reliance on grace, God and each other...somehow, indeed.

Tuesday, July 9, 2013

Happy would be/should be 4th Birthday Piper.



I now call July 7th, Pipers "would be/should be" birthday. If she had survived the beast that is infantile leukemia and because truly, parents should not outlive their children.

She should be here.

And despite the throes of labor I clearly remember from July 7 in 2009, she is not and this is where the would be comes in. Remembering the day of her death was horrible but remembering the day of her birth is not.

Piper Jean was beautiful. And desired. And special in a million ways.

So to acknowledge her birthday is a mixed bag of emotions for me. There is the smile I get when I remember the feeling of holding my second daughter with relief and happiness. There is the pang of pain I feel when I see others who are allowed to age. There is the wistfulness that comes when I think of plans for Pre-K classes she should be a part of and size 4 dresses and the lock of very fair blonde hair that I still have from the last time she lost her hair.

Mainly there is a peace.

It's a peace that I have to consciously cling to. It cannot be frivolous. I cannot be flip in my fight to survive and thrive and live according to this loss God has brought us through. I have to deliberately and actively chose Joy and to chase peace and to trust Gods plan.

I wish Piper were here today. I wish she had never had to fight for her life and we could be unscathed as a family. Mostly I wish she had survived and I was resting up from planning a 4 year old little girls birthday party. I wish I knew what little 4 year old Piper would have liked and wanted. I wish I could have woken her up with balloons like we did for Linley and shopped for her favorite dinner to prepare...

But I cannot.

I had to settle for buying her favorite food, Strawberry Shortcake ice cream bars, and eating them in bed with Chad and Linley and Beck for breakfast. And talking about the girl we miss and loved and love still.

It's a frail substitute for holding Piper.

Even so, my sweet girl...

I will celebrate your birth each year, despite not having you to hold. Each year I will praise God that He gave us 2 years and 6 special months with you. Each year I will question Him and His plan and each year I will again, chose to cling to the promise that this life is fleeting and that you are waiting for me.

Happy would be/should be 4th birthday to my sweet Piper Jean.

Saturday, June 15, 2013

One month

Ok. Lets be honest...

Beck is actually one month and a few days but I was slacking and missed the 6th of June, though I have no idea what I was doing...here's betting it involved my son and cuddles or my daughter and swimming.

That seems to cover my lovely days.

But back to Beck and this sweet milestones. He has proven himself the most contentedly happy baby I have ever birthed much less seen. He is happy in my arms, happy in the car, happy in his swing, happy in his bouncer, happy awake and happy asleep. He has given me a 6 hr stretch of sleep every night since we came home from the hospital and he eats 4 oz about every 4 hrs throughout the day. When Beck is awake he has the biggest and most alert blue eyes I have seen and he began giving us small smiles at about 3 weeks old...he will only truly cry when he is hungry and being forced to wait and even that cry actually sounds like "huh-uh, huh-uh, huh-uh" and makes me smile.

Physically, Beck was back up to his birth weight at 1 week old and had already almost put on an inch which leaves his super short parents scratching their heads. His hair remains strawberry blonde and his baby acne came and went blessedly quickly. And he has the sweetest little knees you ever could see.

Spitting up continues to be an issue and we are concerned that he will think his name is "Oh Beck" for all the times he hears us say that as we notice him spitting up. Yet again. It's crazy-ville, I tell you. But he is the happiest spitter and we are just trying out new positions, new formulas and new ideas as we hear of them.

So here is my firstborn son. Beck has been a joy to my weary soul since the moment I knew of his conception ...and he continues to sooth me. I'm thankful he is so happy as I am so happy to have had the honor of holding him here for this month and pray fervently for many more.

Friday, May 31, 2013

Thirty-two

Today is my birthday.

I am 32...

(Born in 1981, not 1881 like my sweetly confused eight year old thought.)

I spent a good part of today crying. Some happy tears. Some sad tears. Tears while driving. Tears while hiding in the bathroom. Tears while laying out my clothes. Tears were big today, yo.

I cried today because I couldn't help but compare this birthday with my thirtieth birthday. (I scarcely remember turning thirty-one much less living the past year) When I blogged about that date two years ago I was filled with optimism. I spoke of a cancer free almost two year old. I spoke of fixing my marriage. I spoke of knowing God more closely and gaining patience in my life. I spoke out through my writings of happiness and contentment and a future...I had big plans for being 30.

Unfortunately, thirty was not the year I found myself or rested in my optimism. Thirty was the year I almost died...the year that I fought with all I had in me for Pipers life. The year I just wanted to keep my little family afloat. The year I yearned for simplicity and the year that I held my second born daughter, beautiful and broken, as she died.

Thirty sucked in such a big way.

Thirty was without a doubt, the worst year I have lived and hopefully, will live.

And now two short years later I am beginning again to scratch my way to the surface. I have felt peace and I have felt a despair that would frighten the most staunchly faithful soul.

Often within moments of each other.

Of thirty-two I have no expectations.

I have a heart filled with joy after birthing the sweet boy I call Beck. I have a heart filed with thankfulness that God is continuing to allow me to raise and love my Linley. I have a heart filled with trust as I look to my husband and learn more about how to be the wife I need to be...irregardless.

I am learning. Two years after I had an overflow of wit and optimism I fear I am left a weary but upright woman. I feel every single one of my thirty-two years and I relish them each despite not remembering large chunks of a few of them.

I am thankful for them.

For each of these thirty-two years, I have lived and breathed and even, hurt. There is a quote I see floating around the Internet and it rings so true to me...

"do not regret growing older, it is a privilege denied to many." (unknown)

So I will grow older. Perhaps wiser. Always as faithfully and deliberately as I can muster up the strength for. And here's to you, thirty-two. Be kind to me...I'm only waiting to see how you unfold and I am thankful you've arrived.


Wednesday, May 8, 2013

Welcome, Jasper Beck Needham


...I am so very happy to hold you.

May 6, 2013 at 9:20pm, weighing 8.5 and measuring 21 inches long.

We are entirely smitten with his sweet temperament and big blue eyes. Beck prefers to be skin to skin with mommy and has the sleeping gig down pat...not so much with the breast feeding but we are working through that hopefully. He and Linley have already spent many moments staring into each others eyes, he adores having his cheeks stroked and has peed on his Daddy, not once but twice while having his diaper changed.

He is a perfect addition to this small little crew and we are thankful that Gods sovereignty placed him here.

Friday, May 3, 2013

40 weeks/9 months/my due date/may 3, 2013

That's today. And unless this little man sees fit to burst out of my womb within the next 45 minutes, he will "officially" be late. I'm ok with that since I do still feel pretty good and all my appointments are showing no concerns but even so, it sure would be nice to meet him.

Apparently, I currently have two speeds I am rolling with each day:

1) frantic cleaning/nesting

2) comatose napping

Neither are a joke either...my house constantly smells so fresh and so clean and the laundry is neatly folded in the appropriate drawers. The winter clothes have been replaced with summer attire, the gardens have been weeded, quick and ready to grab breakfasts have been cooked and are frozen, and I have quite a back up supply of all things household and personal care...just in case I go into labor quickly and Chad can't find Kroger while I am nursing this new son of mine and Linley finds herself without toothpaste.

And then when these cleaning/nesting spells are over, I lay down for a short rest and wake up, drooling beautifully, 3 hours later. And I am no napper, unless apparently I am pregnant then all previous likes and dislikes fly out the window.

Except for my love of cream cheese topped with red pepper jelly and eaten with club crackers...possibly in 10 minutes or less. Possibly. Very possible.

I feel quite ready.

Linley spends a lot of time talking to my womb and asking Beck to "please give mommy some contractions soon" and Chad kind of eyes me from the other side of the bed each time I attempt to roll over...I think it's safe to say I am frightening to him, though he hides it well when he tells me I am pretty.

He's done this a time or two before.

So we continue to wait. My next appointment is Monday afternoon and I wouldn't mind missing it for having had Beck or being in labor but I have a feeling I will be waddling in as planned.

He is coming so the details are all ok. I have prayed that he will be a contented little man and if his lack of desire to have more space is any indication, then I may have had an answer to prayer indeed.

I cannot wait to meet you son.

Monday, April 22, 2013

The art of grief

There is an art to grieving. I didn't know this and even as we began our efforts to grieve well last April, I was unaware of the magnificent attempts I was going to need to make it each day. I just figured I would cry a little, laugh when forced and the earth would rotate on, oblivious to to my new role.

Sometimes grief numbs and sometimes it floods with more emotions than are easily worked through.

A friend who recently lost a child was telling me how hard it is for her to simply get out of bed. That there is little to no desire to thrive and surviving is simply because other babies rely on us. Living lacks joy and brings tears.

She no longer feels her worth as she did before losing her flesh and blood.

And I get that.

See, when you are still alive and your child is not, you will despair. You will feel helpless and overwhelmed and sad. A sadness so deep that you probably just nod at it in acknowledgment every once in a while knowing full well that if you were to fully acknowledge it you simply would die.

This is the truth and it is ugly.

People who have not lost this magnitude cannot comprehend. I have learned to be selectively honest when asked how I am doing...many women who would hear me talk would be concerned. They cannot understand and they somehow need to still see me moving on and praising God and smiling. They need this almost more than I do, if that is possible.

And that is where the art comes in.

Where being honest collides with being depressing and I am left a grieving but emphatically/weakly faithful woman. Where I can tell you all about how dark my thoughts grow at times and still show you that I am wearing pants and my hair was recently washed .

This is the art.

Grieving honestly while breathing still.

Sobbing then showering.

Staying in bed for the extra moments so you have the strength to mother.

Again, people want to see me as strong. I imagine in the dark parts of their fears they need to know one can survive loss like this...they don't want to know that it is simply by the Grace of God that I am still here.

Still grieving.

Still making the decision to live.

So when you hear a woman say she is okay, she may be in that moment. And in the next she will be hiding in the bathroom at church because there are way too many almost 4 year old little girls running around, reminding her.

Love this woman.

She doesn't have a clue how to be this sad any more than you do, but she was thrust in to the balancing act of remembering how much breathing hurts and how much and many rely on her to do so anyways.

One year later this hasn't changed.








Sunday, April 7, 2013

"there's a whole lot of you there"

Someone said this to me the other day.

I'm not easily annoyed or offended so I just laughed and asked them to bend over and pick up the pen I had dropped because there's not sense in not getting some sympathy help from someone who can see me large and in charge.

And I love it.

My hips ache, my left foot is often swollen and my right leg twitches none stop. I have heartburn just about every day and a little boy with constant hiccups.

And I'm not waddling....

Ive got pregnancy swagger...

Would you believe me if I said that I love this beautiful opportunity? That even as I complain about a physical ailment, I am rejoicing because I am having a child. You best believe I don't take that for granted and I appreciate it.

I "swaggered" out to the front yard today to water these beautiful red tulips that Chad planted for me last fall and then roped him into taking a picture of me...waiting at 36 weeks...for my son.

Indeed there is a whole lot of me. Both girls were pretty petite and I never got this large with them, I am certain.

Four weeks to go...




Easter pictures

I have a beautiful daughter.

Inside and out, Linley is quite stunning and I forget sometimes to document this in both photos and stories. Our church had an Easter Egg Hunt the day before Easter and we were able to participate this year...unlike last year, which I do not remember, but apparently they chose to not have in honor of my daughters funeral a few hours later.

Have I mentioned I am in a good, good, good church?

I am.

And I am thankful so many times over.

But this year we were all about Easter Egg hunts and Linley had 3 separate ones (church, school and Nanas house) and did a great job of scoring Mommy and Daddy some good loot that I now have stashed up on the fridge so it's relatively "out of sight and out of mind" until I find Chad digging through it which makes me need a jelly bean that I hadn't even thought about 2 minutes before.

Here she is. This is not an aggressive child in any way, shape or form...in fact she might have forgotten the entire hunt for the way she tends to people watch. The little guy lined up next to her was asking how was she going to get the most eggs and she looked totally taken aback...

Again, not aggressive but beautiful.

Thursday, April 4, 2013

And I miss you Piper.

Most mothers don't have to ever experience having a child die, much less the frustration of how to acknowledge the literal day. They get to celebrate birthdays and first steps and report cards. Me? I get to stumble over the wording of mentioning the anniversary of Pipers death. We sure as heck won't be celebrating it, not as we were able to both celebrate and mourn her birthday but it's not exactly a date one can just skip over.

Especially when it is the completion of the first year. The one I wasn't entirely certain I would survive in one piece.

But I did. And Chad and Linley did. Heck, we are soon bringing Beck into the fold as a sign that life hasn't entirely stopped around here. We have survived and at rare moments, we find ourselves thriving, albeit only by the grace of our good God.

Even so, as we found April 3rd rolling towards us not unlike a long black train barrels towards its destination, we mulled over what to do with ourselves. When we realized it was smack dab in the midst of Linleys spring break and it was a Wednesday, which is Chads only guaranteed day off each week, we quickly put two and two together...

And drove to the beach together which was the perfect place for 3 sad faces to hunker down and simultaneously weep and smile for who once was in our world 365 days ago.

For just over 365 days I have woken without Piper. It has not gotten easier. I did not cry less today than I did April 4, 2012 after that first night without her. I still feel an overwhelming sense of forgetting something each and every time I pull out of my driveway. I still want to buy Bugles at the grocery store. I still hear her voice in my dreams and I still hold my arms as though she were securely settled into them when I shower each and every morning and I rock in grief.

I've been told the second year is the worst...Im simply not certain that is possible.

Thank you all who remembered.

And I miss you Piper.


Saturday, March 30, 2013

It was promised to me

"Once more heed the exhortation- stand close to the cross of Jesus! It is the most accessible and precious spot this side of heaven- the most solemn and awesome this side of eternity. It is the focus of divine love, sympathy and power. Stand by it in suffering, in persecution, in temptation. Stand by it in the brightness of prosperity and in the gloom of adversity. Shrink not from it's offense, humiliation, and woe. Defend it when scorned, despised and denied. Stand up for Jesus and the gospel of Jesus. Oh, whatever you do, or whatever you endure, be loyal to Christ's cross. Go to it in trouble, repair to it in weakness, cling to it in danger, hide beneath it when the wintery storm rushes fiercely over you. Near to the cross, you are near a Fathers heart, a Savior's side."

Yesterday was Good Friday and tomorrow will be Easter Sunday. Last year we squeezed the funeral service of my second born daughter in the middle and I hardly remember a detail.

That is mind numbing grief.

And yet last night as I sat in church and heard scripture read about the magnificent sacrifice that my God gave for me and my family and you, I was choking back the word "thankful". Not yet thankful for so many details that my life has held, but immense thanks that all is not in vain. Not all is loss.

It was promised to me.

This week we will acknowledge with the heaviest hearts I ever could imagine carrying with me, that it has been a year since Piper was here in my world. I am not certain that I ever even noticed that she died so closely to Easter, the holiday that once was my favorite. Now it holds a meaning and a reminder much deeper than just a "holiday"...it is a season I will grieve both my daughter and my God. It is a season I will ache and yearn for both my daughter and my God. And it is a season that will remind me that I will indeed, be reunited with both my daughter and my God.

It was promised to me.

This me that hurts so deeply and consistently that I should have died many months ago from the sheer weight of trying to carry it with me...of forgetting so many of the steps are not mine to take and the burden is not mine for eternity. That if I stay close to the cross, I am strengthened and encouraged and reminded of how good that the ugly of the ugliest can be.

That when Jesus was hung on that cross with my face in his mind and He chose to carry my sins although He knew, he knew, he knew that I would never be able to repay him or fully appreciate what he had done....that He still did this. And when I remember the details of holding a daughter who is breathing her last breathes and I knew, I knew, I knew that there was simply nothing more I could do to buy more time or fight any harder...and still I would do it again if only I were allowed. I was able to fully love this girl simply because of the strength of my God and the hope and trust in His words.

And so last night as I was weary, grieving, aching for so much, I chose yet again to stand close to the cross. To be thankful that all is not lost and all is not in vain. It is indeed the most "accessible and precious spot this side of heaven" and I will simply fade away if I chose to lean on anything else and to forget that Jesus's death gave life.

Saturday, March 23, 2013

Fireplace traditions

Over the summer my father made the investment in a small home. Chad and I quickly accepted his offer to rent it to us, to enable us to have some of that much sought after stability after lacking for so long.

And maybe our standards are super simple but we have been blessed to have an indoor laundry room, three good sized bedrooms and two bathrooms as well as covered carport and a beautiful yard. These are not fancy things and I know this but we have lived in some decidedly less fancy places in our almost 9 years of marriage and I know a good home when I move into it and paint it up.

Oh yeah, my conservative and common sense father also let me have the inside painted top to bottom in my own colors as well as the most amazing chartreuse front door. He may not understand the way his artsy fartsy daughter works but he sure does love me. But while I am loving the closet space and the tulips I planted and the crown molding I have one thing that I adore more than I thought I would.

A fireplace.

In my living room.

This fireplace has helped our family reconnect and helped our tenuous rebirth of traditions. Since the cold weather has moved into the south where we reside, we have made it a frequent treat to pull Chad and I's bed into the living room and starting up a big fire and watching movies while feeling a contentedness that could almost pass for happiness, if I were to allow it to. Because Chad works nights and weekends at retail, this sometimes is hard to work out but is always worth it for weary parents who are trying so hard to keep moving and parenting and loving when every fiber in us wants to just stop.

Weather is slowly beginning to improve and our firewood supply is dwindling but the excitement that crosses Linleys eyes when we mention the evenings plans is heartwarming and makes me almost sad to see spring springing up. I love the process of watching Chad teach her how to make a fire, I love the gut giggles Linley gets when watching Duck Dynasty curled between her father and I and I love feeling the bed shift in the night as Chad rises to stoke this fire and Linley leans into me and the world seems right somehow in the inky darkness of night. Now how this will work with a new little man rolling around next fall and winter will be interesting but when has interesting ever slowed us down?


Thursday, March 21, 2013

34 weeks

I often forget I have a blog.

I found writing to be such a perfect tool the past few years of chaos, now I cannot face those emotions or the possibility of remembering depth. This is probably why so many of my posts are sad or discouraging...I am sad and discouraged and I don't remind myself of this little fact often enough.

But in the midst of this sadness are lives that continue to march on. Not nearly enough little lives or heartbeats that I can hold in my arms or feel the pulse of, mind you, but lives that mean the world to me none the less.

Including the little life I have yet to meet, though the countdown has begun. The little life I feel roll around in my womb and the little life that has single-handedly kept me from becoming a full fledged grieving alcoholic mother the last (almost) year. The little life that fills up the space between me and the steering wheel as I drive and the little life that gets the hiccups daily, which I still can't get used to.

This little life is a little boy.

That little fact is more than a little frightening to me as I have mothered little girls for 8 years and really, why can't little boy clothes be nearly as cute as little girls? And am I really going to get peed on as often as I am told I will? And will he really ever find a woman who can compare with all this that I am? All this keeps me on my toes and I am certain will not stop for a while.

This little life is named Jasper Beck.

You can just call him Beck.

He is due May 3, though I hope he will arrive early and allow me to stop the twitching my right leg has done since 19 weeks. He is also measuring bigger than the girls but in the 4d ultrasound that I had last week he has the same round cheeks and button nose as his sisters...we obviously have a Needham mold our children fit into.

Last week after I returned home from a hair cut, I was greeted by the ever lovely Linley. Apparently she is also expecting a little boy and is quite tired as she waddles around the house. She has dinner to prepare and a load of laundry to fold and then she is looking forward to eating her nightly dose of Fruit Roll-Ups.

( ok, the last part is all me)

( the rest of it was all her and I now have confirmation that she is indeed, paying attention to her mother)

Chad took these pictures and they make me smile so you should as well.

Friday, March 8, 2013

Piper Jean Needham and her story

Recently I was asked to write a letter to be included in a presentation to the Penn State Research and Development team. This presentation was intended to bring real life stories to those who actually have the ability to start change...new treatment options for pediatric cancers and new hope for families.

My Pipers story was part of this and it was a pleasure to be asked...though gut wrenching to remember things that I must block out in my attempt to continue surviving. This is my letter. I hope it touches people and ignites the change so needed.



To whom it may concern,


After the birth of my second daughter I remember sitting for hours, staring at her. She fascinated me with her bright blue eyes so like her older sister. Her cheeks were the perfect plumpness to kiss on and her petite fingers naturally folded over mine. However each of these physical attributes paled in comparison to how much hope I felt when I held her. Who would this sweet girl become? What sort of personality would she have? What would her favorite color be or her favorite movie and how would she dance when her daddy pulled out the guitar and played for her and her sister?



What would Piper Jean Needham be when she grew up?



Many questions and dreams and hopes that I held for my daughter are left unanswered. Piper Jean Needham was diagnosed with a rare cancer called Infantile Leukemia at a mere 10 weeks old. From the first moment we heard “she has leukemia…and it’s not the best case scenario” we lived with a strangled fear. Piper’s cancer has few survivors. It most times includes a gene rearrangement called the MLL rearrangement that gives each of her leukemia cells partial characteristics of ALL and partial characteristics of AML. This was a crafty beast of a cancer. Each oncologist that we saw walk through our hospital room those first fearful days, came in with trepidation. Here I was a mother barely over birthing this sweet life and now I had to fight to keep this sweet life…how could they encourage me and my stoic husband when there was simply so very, very, very little information and research to show me in Pipers favor? There simply were few answers to our battery of questions and ugly answers at that.



So they came up with a plan. It was motley at best. It would consist of massive amounts of high dose chemotherapies as well as massive amounts of steroids as well as massive amounts of medications that would keep her body as safe as possible as we broke it down with the small hope of fixing it. Piper began treatment in September of 2009 and spent 80% of the first year of her life in that same hospital. Treatment did indeed break her down. The high doses of Methotrexate caused severe burns where it seeped out of her skin and broke down her fragile epidermis. This, despite the catheter she was given and the constant fluids to get the poison out of her system quickly without damaging organs. Piper would receive adult doses of Daunorubicin, Cytarabine and Vincristine in rotation as well as Dexamethasone and Prednisone.



Each chemotherapy that my spouse and I had to sign consent for included a list of possible and probable side effects. And each time chemotherapy was administered we knew it was damaging something, somewhere. But what else could we do…we must continue to follow the plan. As a result of monthly steroid use, Pipers bones were brittle and she broke her elbow at 8 months old. As a result of Vincristine, she struggled with neuropathy and never walked independently. After about 14 months of non-stop, intensive treatment Piper contracted a virus called Cytomeglovirus which caused her sixteen month old form to drop to a shocking 14 lbs. and once diagnosed, gained her almost two months inpatient on the rehabilitation unit to relearn the eating process and the strength to even sit up unattended.



By the time Piper turned two, she had completed treatment. Having been in remission from the very first round of chemotherapy, the doctors were finally smiling when they spoke of her future. She was plump. She had fine, wispy blonde hair that I daily pulled into the sweetest little piggy tails you have ever seen. She spoke and comprehended as well as any other little girl and used a significant amount of sign language in addition. Piper had a walker that we covered in pink polka dotted duct tape and attached a small purse to the front for her to carry all the normal treasures that a two year old comes across. Chemotherapy was over, clinic and blood counts were less common and life was as normal as it could be and as sweet as it ever got to be.



Unfortunately this sweet normal was quickly upended when a UTI causing a fever caused a CBC to be ordered and showed “suspicious cells”. Relapse was confirmed within 24 hours and once again we found ourselves struggling to breathe and walk and hope. Like Pipers first diagnosis, we were stunned. Unlike Pipers first diagnosis, we were not in uncharted territory. This time we knew too much. While an Infant Leukemia diagnosis typically had a less than 30% survival rate, we knew that a relapse Infant Leukemia diagnosis would halve that. So the there was more chemotherapy, some experimental and some not. There were more hospital stays, more medications, more hair loss and more unanswered questions. Piper prepared for and had an unrelated Bone Marrow Transplant on December 28, 2011 following a week of twice daily Total Body Radiation. At this point each doctor who cared for Piper was clear that they were putting all their proverbial eggs in the one basket. This was the final attempt to cure my daughter. The transplant process took our battered family and beat us even more. My husband and I took turns being with Piper in her solitary room and being home with our very busy 6 year old daughter. My husband dropped out of his Engineering program at the University of Georgia. Our first born cried for whichever parent was out of her arms and Piper physically needed us for every little thing.



And then, a month and a half after transplant my Piper relapsed again. This time there were no fragile hopes to offer to us. Her cancer had outwitted each of the cocktails of chemotherapy, total body radiation and a bone marrow transplant. We were sent to St. Jude for a experimental Natural Killer Cells transplant which further damaged her fragile body. After 4 weeks of treatment on the Bone Marrow Unit, Piper was transported to the ICU and sedated the next day. Her lungs were sick, her heart was weak and her blood pressure was unstable. For three weeks, we sat by her bedside and sang to her and prayed for her and waited for more lab results or blood work or a miracle of the biggest demand.



When your child is diagnosed with a rare cancer, you are isolated. Miniscule amounts of hope or information or successes are what you cling to. There are no other options when you are fighting for the life of something you conceived, carried and delivered into this world. There is always the knowledge that not enough has been done. For Piper and for children before her with pediatric cancers and for children who will battle pediatric cancers in the future. When it came to my own daughter, enough was done to give us some beautiful days in the midst of the ugliest of ugly and even this could not satisfy this broken mothers’ will to find a cure.



Healing. Hope. A cure and a future.



Three weeks after Piper was sedated in the ICU, she breathed her last breath. I was holding her in my arms just as I had shortly after she was born to me. This time there was few thoughts of whom she could or would be and in its place was a grief so tangible I still cannot believe I have survived. Piper was covered with IV lines and tubes and her beautiful blue eyes were closed to me though I spoke to her of my love, of the love of her Daddy who held her hand and the love of the big sister who wept openly. As I passed her battered and beautiful body over to the nurses I knew that we had done all we could.



But there is still so much more that you could do. You can support research. You can set aside money and time to learn more about rare cancers as you do common and popular cancers. You can chose to not turn away when you see a bald child and you can chose to instead save that child through new treatments, new medications and ways to lessen the risk of secondary cancers or side effects. You can do it. I could not do any more than what I did…love my daughter fiercely and daily but I sure as hell can ask you for more. I do and I always will. I’m thankful that some have not given up on these children. They are the reason I had the years I did have with Piper and not mere hours or days. They are the reason I was able to hear a sliver of hope and cling to it and for that, I am grateful. Grateful but never satisfied.





Piper Jean Needham lived two years and nine months. She will never see three years old or four or twenty-two. Piper will never have a crush on her next door neighbor or the chance to walk into her elementary school behind her big sister or the chance to scare her father while he teaches her to drive. Her life ended April 3, 2012 and though I do know that she was a spunky and fancy little thing that loved the color pink, the movie Annie and to sing along with Allison Krausse, and a million other details forever etched in my memory, this is not enough. Because when her Daddy pulled out his guitar and sang to his girls, Piper was the first to shake her hips and raise her arms and giggle and bring sweet tears to my weary and worried eyes each and every time and that memory shouldn’t be just a memory.

Thank you,
Susanna Needham

Tuesday, January 22, 2013

Trust

Sometimes it baffles me what God has required of me and my family. Because yes, I do think He chose this adversity, the loss of a child, the magnitude of grief, for me and mine.

I will still often hear myself saying something about having a daughter who has died and I stop and have to wondered...is this for real? Did I really survive the chaos of the last 3+ year and am I really now required to continue breathing? When the hurt is so huge I could cover up with it and never move again?

As I am writing this, there is another amazing little fighter at St Jude who is in critical condition. Same disease. Same diagnosis. Same doctors and many of the same treatments. Medically he is fragile as it can be and emotionally his family is worn.

I remember those days.

I cannot describe them to you.

They are the emotions that nightmares are made up of...the reason I haven't slept though the night since Piper died and the reason I wake in a panic multiple times a week.

Nightmares.

And I hurt for each family who has this to face. Who is required to grieve. Who loves as deeply as is possible and as tenuously as necessary.

When all is said and done this often feels like a nightmare. Not like something that somehow (and I wont even pretend to know why) will work out for Gods glory. That this loss was part of something bigger. That I am required to trust and rest and believe that things are redeemed.

Each face I see in my mind, each family that grieves, each startle that awakens me...all are a part of something bigger than I have yet to comprehend.

This won't change my hurt and surely won't bring a smile to my lips but it will keep me moving and breathing and someday, I hope we will begin to thrive...not just survive this.

This is what God has required of me now. Now that the die has been cast and the girl I loved has been taken away...

Trust.