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
Friday, March 8, 2013
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.
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.
Saturday, November 24, 2012
11/24/12
Eight months ago my sweet Piper died. We packed up our hotel room and came back to Georgia and planned a funeral. We spent the next few weeks in a daze...and I am not kidding. Chad and I have often looked at each other and been amazed at how little we remember from spring and summer.
Survival is like that, I guess.
And you know what? It gets harder. Every day it hurts more. Less people ask after you. The every day list of things to do becomes more daunting. Expectations begin to rise again and you feel the need to be less sad and more joyful when in reality there is little more than you would like to do than hide.
It's tricky to hide.
On top of grieving, which I would love to do emphatically, are responsibilities. And I for one am hating responsibilities. I am hating that Chad must go to school and work when he hurts so deeply. I am hating that my heart is so heavy I feel like I am constantly letting people down. And that's if I am around people because the more I hurt, the less I want to be around anyone. I want to hibernate and sleep and putter around my home which feels like a sanctuary.
Until someone breaks into our storage shed and steals Chads tools and drills and tackle boxes and my already fragile sense of security and leaves my Linley fearful of sleeping alone and wondering what exactly is God protecting us from if not death or theft.
Yes, that happened.
And when bills are piling up and health issues are arising and hearts are already so very heavy and disappointments abound and you feel frantic in your attempt to JUST KEEP YOUR SHIT together...you realize you are not, indeed, keeping much of anything together. Despite trying. Despite hoping. Despite your scuffle to do all you can you are only treading water with a leaking life vest.
This is where we are.
Or at least this was where I was before today.
Today I planned to begin the process of decorating for Christmas. Last Christmas was filled with equal parts fear and hope...a tenuous balance at best. And yet we made ornaments with handprints and both Linley and Piper picked out their yearly ornament. I made 4 stockings and we placed the Nativity on the shelf. After doing all this the girls would spend each evening next to the tree checking out all the different and meaningful ornament and it was beautiful and it was normal.
Again, we were flooded with fear and hope.
And today when I went to pick up my decorations from the last place I remember seeing them, they were not there. And no one can remember where they went to. Rubbermaid containers filled with homemade ornaments and 1st Married Christmas ornaments and tree skirts and handprint decor and plastic candy canes and photos with smiling little girl faces....are all gone.
It was like losing all over. I am already aching to reach for Piper...there are no more memories to make with her, ever. I am missing the small years with Linley...I am yearning to see her color with the same intensity that she did when three years old. And the symbols of these brief moments with the girls are gone...I cannot find them and my home at Christmas this year will be stark.
Stark when I really, truly needed to feel full and really, truly needed to be reminded physically of some sweet moments.
So before today we felt beaten. Floated. Forgotten. Hurt. Fragile. Pick a painful adjective that works best for you.
And now, I am struggling to push, push, push down the despair that is creeping at me. The despair that threatens to outshadow my weak contentment with what little I do still hold. So often I feel the pressure to extoll God and his goodness and his mercy and joy and hope and yet, today I am putting all that in my pocket and sobbing for the hurt of it all.
So much is lost. My daughter, my security and some sweet symbols that once we held hope while living fear.
Survival is like that, I guess.
And you know what? It gets harder. Every day it hurts more. Less people ask after you. The every day list of things to do becomes more daunting. Expectations begin to rise again and you feel the need to be less sad and more joyful when in reality there is little more than you would like to do than hide.
It's tricky to hide.
On top of grieving, which I would love to do emphatically, are responsibilities. And I for one am hating responsibilities. I am hating that Chad must go to school and work when he hurts so deeply. I am hating that my heart is so heavy I feel like I am constantly letting people down. And that's if I am around people because the more I hurt, the less I want to be around anyone. I want to hibernate and sleep and putter around my home which feels like a sanctuary.
Until someone breaks into our storage shed and steals Chads tools and drills and tackle boxes and my already fragile sense of security and leaves my Linley fearful of sleeping alone and wondering what exactly is God protecting us from if not death or theft.
Yes, that happened.
And when bills are piling up and health issues are arising and hearts are already so very heavy and disappointments abound and you feel frantic in your attempt to JUST KEEP YOUR SHIT together...you realize you are not, indeed, keeping much of anything together. Despite trying. Despite hoping. Despite your scuffle to do all you can you are only treading water with a leaking life vest.
This is where we are.
Or at least this was where I was before today.
Today I planned to begin the process of decorating for Christmas. Last Christmas was filled with equal parts fear and hope...a tenuous balance at best. And yet we made ornaments with handprints and both Linley and Piper picked out their yearly ornament. I made 4 stockings and we placed the Nativity on the shelf. After doing all this the girls would spend each evening next to the tree checking out all the different and meaningful ornament and it was beautiful and it was normal.
Again, we were flooded with fear and hope.
And today when I went to pick up my decorations from the last place I remember seeing them, they were not there. And no one can remember where they went to. Rubbermaid containers filled with homemade ornaments and 1st Married Christmas ornaments and tree skirts and handprint decor and plastic candy canes and photos with smiling little girl faces....are all gone.
It was like losing all over. I am already aching to reach for Piper...there are no more memories to make with her, ever. I am missing the small years with Linley...I am yearning to see her color with the same intensity that she did when three years old. And the symbols of these brief moments with the girls are gone...I cannot find them and my home at Christmas this year will be stark.
Stark when I really, truly needed to feel full and really, truly needed to be reminded physically of some sweet moments.
So before today we felt beaten. Floated. Forgotten. Hurt. Fragile. Pick a painful adjective that works best for you.
And now, I am struggling to push, push, push down the despair that is creeping at me. The despair that threatens to outshadow my weak contentment with what little I do still hold. So often I feel the pressure to extoll God and his goodness and his mercy and joy and hope and yet, today I am putting all that in my pocket and sobbing for the hurt of it all.
So much is lost. My daughter, my security and some sweet symbols that once we held hope while living fear.
Monday, November 5, 2012
Numbers
If I have said it once, I have said it a million times.
I am no good with numbers.
And by numbers I mean math, or dates or anniversaries or at times, even reading a watch. It's not my vibe and is the sole reason I do not have a college degree. If you think I am kidding, ask my parents about all those lovely colleges I tried out in my quest to be educated.
It's bad folks.
And it's also a big part of why I married my number happy spouse, though we agree to disagree on the difficulty of adding or algebra. That's how we stay married.
But like I said, it's not just math, it's also dates or anniversaries. My number-happy spouse knew this and had our wedding date inscribed on the inside of my wedding band so that I can simply pull my bling bling off and read that date when asked how many years we have been married. It's 8, by the way...you're welcome.
Which is why I am supremely impressed with myself when I can so easily quote you both Linley and Pipers birthdays, birth stats and birth times. I'm certain it's a mother thing as I am certain no love compares but none the less the importance of those two beautiful dates and details will be burned into my fragile mind forever.
What I had never expected when I delivered either of those beautiful girls, was that less than three years post Pipers birth, that I would hold her in my arms while she breathed those last sweet breathes here on earth. And that I would not remember the time she left this earth or the days she was blessed to live them.
Or that a mere 7 months later I would forget the day. That the 3rd of this month would pass without preamble or emotion or even recognition. When this dawned on me today I felt immediately sick...that the tediousness of living allowed me to forget just hurts.
As I said, this number phobia runs deep. And yet today I learned that I am indeed, clinging to numbers more than I ever thought I would. While the letters and words I write flow so easily, the numbers are stoic. Unchanging and bringing with them memories whether I chose to remember or forget to acknowledge. Each month the 3rd will happen, whether I notice or not. Whether I write something. Whether I want to remember or not will not matter. Whether I like numbers or not will never matter because they are very obvious in my world and when they aren't obvious they are all the more painful.
I am no good with numbers.
And by numbers I mean math, or dates or anniversaries or at times, even reading a watch. It's not my vibe and is the sole reason I do not have a college degree. If you think I am kidding, ask my parents about all those lovely colleges I tried out in my quest to be educated.
It's bad folks.
And it's also a big part of why I married my number happy spouse, though we agree to disagree on the difficulty of adding or algebra. That's how we stay married.
But like I said, it's not just math, it's also dates or anniversaries. My number-happy spouse knew this and had our wedding date inscribed on the inside of my wedding band so that I can simply pull my bling bling off and read that date when asked how many years we have been married. It's 8, by the way...you're welcome.
Which is why I am supremely impressed with myself when I can so easily quote you both Linley and Pipers birthdays, birth stats and birth times. I'm certain it's a mother thing as I am certain no love compares but none the less the importance of those two beautiful dates and details will be burned into my fragile mind forever.
What I had never expected when I delivered either of those beautiful girls, was that less than three years post Pipers birth, that I would hold her in my arms while she breathed those last sweet breathes here on earth. And that I would not remember the time she left this earth or the days she was blessed to live them.
Or that a mere 7 months later I would forget the day. That the 3rd of this month would pass without preamble or emotion or even recognition. When this dawned on me today I felt immediately sick...that the tediousness of living allowed me to forget just hurts.
As I said, this number phobia runs deep. And yet today I learned that I am indeed, clinging to numbers more than I ever thought I would. While the letters and words I write flow so easily, the numbers are stoic. Unchanging and bringing with them memories whether I chose to remember or forget to acknowledge. Each month the 3rd will happen, whether I notice or not. Whether I write something. Whether I want to remember or not will not matter. Whether I like numbers or not will never matter because they are very obvious in my world and when they aren't obvious they are all the more painful.
Thursday, November 1, 2012
Halloween 2012
Yesterday was a normal day for me. I was babysitting, like I often do. I planned a playdate, like I often do. I vacuumed and swept and moped, which I don't often do but I got a little dose of housewife while I was hiding inside from the cold and wind.
This cold and wind made me continue my search for my winter boots. I have small feet so I was fairly confident that my sister had not stolen them and I have a 1400 sq ft home that lacks excessive storage. The blasted boots were no where to be found and I was beginning to realize I was going to have to search the trunk of my car.
I really don't like doing that.
When I get groceries I sort of throw them in there and that's only if I have no room in the back seat. My goal is to not look in the trunk of my car until I am good and ready, though when that will be I have no clue.
Good and ready for what, you say?
The trunk of my car is still filled with the things that we packed to stay those long and sad and hopeful weeks in Memphis. When I shove milk in there I can see the backpack with Pipers name on it. I see little shirts that she will never wear again and the soft blanket that she and I would curl up under while watching movies and napping.
As soon as I popped the trunk open, I saw one boot and kept looking for the other as I began to cry. I was sobbing by the time I located it and slammed the trunk shut. Such sweet toys and books and the little phone she liked to chat away on...things I am not emotionally stable enough to touch.
I drove through the carpool line at Linley's school while attempting to get my mess under control and chatted with Linley about her excitement for the Halloween activities planned for the night. She had put together one adorable cat costume, complete with a tutu, a collar and this mommy painting her face.
After getting off work, she and I met up with friends and my tears, though gone, sort of clung to the back of my throat. Last Halloween it was Piper and I inpatient getting chemo and she had not one, or two but three costumes she would wear for a few laps around the unit in order to get the smiles and the attention. I would follow her holding her IV pole and she would smile and show up.
As wrong as it truly was, it felt incredibly right.
This year it was Linley and I. She got her fill of candy and she was beautiful and she reached for my hands often.
There were no IV poles, not even any tears since I was determined not to rain on her excitement of the day.
As right as it looked to an outsider, it felt so very, very, very wrong.
What a difference a year makes. This is the first holiday of the first holiday season without my sweet girl. And I will tell you now that Chad and I are deliberate in our plan to keep tears to a minimum and happiness on our faces for Linley despite the memories each special day brings up.
I will wear the boots that brought on the tears and I will keep my trunk closed as long as I darn well please.
This cold and wind made me continue my search for my winter boots. I have small feet so I was fairly confident that my sister had not stolen them and I have a 1400 sq ft home that lacks excessive storage. The blasted boots were no where to be found and I was beginning to realize I was going to have to search the trunk of my car.
I really don't like doing that.
When I get groceries I sort of throw them in there and that's only if I have no room in the back seat. My goal is to not look in the trunk of my car until I am good and ready, though when that will be I have no clue.
Good and ready for what, you say?
The trunk of my car is still filled with the things that we packed to stay those long and sad and hopeful weeks in Memphis. When I shove milk in there I can see the backpack with Pipers name on it. I see little shirts that she will never wear again and the soft blanket that she and I would curl up under while watching movies and napping.
As soon as I popped the trunk open, I saw one boot and kept looking for the other as I began to cry. I was sobbing by the time I located it and slammed the trunk shut. Such sweet toys and books and the little phone she liked to chat away on...things I am not emotionally stable enough to touch.
I drove through the carpool line at Linley's school while attempting to get my mess under control and chatted with Linley about her excitement for the Halloween activities planned for the night. She had put together one adorable cat costume, complete with a tutu, a collar and this mommy painting her face.
After getting off work, she and I met up with friends and my tears, though gone, sort of clung to the back of my throat. Last Halloween it was Piper and I inpatient getting chemo and she had not one, or two but three costumes she would wear for a few laps around the unit in order to get the smiles and the attention. I would follow her holding her IV pole and she would smile and show up.
As wrong as it truly was, it felt incredibly right.
This year it was Linley and I. She got her fill of candy and she was beautiful and she reached for my hands often.
There were no IV poles, not even any tears since I was determined not to rain on her excitement of the day.
As right as it looked to an outsider, it felt so very, very, very wrong.
What a difference a year makes. This is the first holiday of the first holiday season without my sweet girl. And I will tell you now that Chad and I are deliberate in our plan to keep tears to a minimum and happiness on our faces for Linley despite the memories each special day brings up.
I will wear the boots that brought on the tears and I will keep my trunk closed as long as I darn well please.
Saturday, October 27, 2012
Jewels.
Last Thursday, I was running errands with Linley. We were on a hunt for some Halloween accessories and found ourselves in Micheals craft store. I quickly gathered all I would need and we began walking to the check out.
Then there was the clearance aisle.
Which I am physically unable to pass by so we wandered around and I reminded myself that I had no clue how to decorate cakes despite cool tools being 85% off or that I probably would not be scrapbooking, like, ever. Then Linley saw this huge faux green diamond. If there is anything my 7 year old digs, it's bling. She gets that from my sister...definitely not this lady. And it was "a fabulous deal" at .79 so I kissed her sweet little head and splurged like only a tired mommy can.
After she was settled into her booster she was just in awe of the awesomeness of this gift. Over and over she talked about how smooth it was, how shiny things looked when she looked through it and finally she said "mommy, when I look through this beautiful diamond it makes my yellow jacket sting hurt less".
Those little words struck me so.
I know pain now. It is both emotional and physical. It can keep me so bottled up that I will surely burst from the massiveness of it all. Linleys yellow jacket sting is painful and even so, just by looking at something of beauty she is distracted enough to have that pain lessen a bit.
My Linley is my very own green faux diamond. She is the thing I can be so distracted by that I can momentarily forget the depth of pain. Never for long...but just enough to be reminded that beauty and good and happiness continues. And now this little bean that rolls in my womb will be a second jewel to lay my weary eyes on. I'd give anything to have my three jewels holding hands but this is the life we have been dealt and I chose daily to look at this sweet seven year old jewel to encourage me when the sting of death becomes overwhelming.
Then there was the clearance aisle.
Which I am physically unable to pass by so we wandered around and I reminded myself that I had no clue how to decorate cakes despite cool tools being 85% off or that I probably would not be scrapbooking, like, ever. Then Linley saw this huge faux green diamond. If there is anything my 7 year old digs, it's bling. She gets that from my sister...definitely not this lady. And it was "a fabulous deal" at .79 so I kissed her sweet little head and splurged like only a tired mommy can.
After she was settled into her booster she was just in awe of the awesomeness of this gift. Over and over she talked about how smooth it was, how shiny things looked when she looked through it and finally she said "mommy, when I look through this beautiful diamond it makes my yellow jacket sting hurt less".
Those little words struck me so.
I know pain now. It is both emotional and physical. It can keep me so bottled up that I will surely burst from the massiveness of it all. Linleys yellow jacket sting is painful and even so, just by looking at something of beauty she is distracted enough to have that pain lessen a bit.
My Linley is my very own green faux diamond. She is the thing I can be so distracted by that I can momentarily forget the depth of pain. Never for long...but just enough to be reminded that beauty and good and happiness continues. And now this little bean that rolls in my womb will be a second jewel to lay my weary eyes on. I'd give anything to have my three jewels holding hands but this is the life we have been dealt and I chose daily to look at this sweet seven year old jewel to encourage me when the sting of death becomes overwhelming.
Monday, October 22, 2012
Bittersweet; doesn't work for me.
Someone asked me the other day if this pregnancy, in the aftermath of Pipers death, was Bittersweet.
That pretty much caused me to mull that word over and over. Bittersweet. I wasn't sure why it didn't quite fit the image and feelings and experienced we have had or are having. Why it left my mouth twisted or my stomach unsettled...but it did. Each time it's mentioned.
So I mulled. I thought. For twelve weeks I have cried because I need a way, or a word to verbalize how all this strikes me because nothing, nothing quite causes a few emotions like holding a daughter while they die and then finding you are having another child one year later. But Bittersweet doesn't cut it...doesn't touch it.
Then I had an image of those wooden puzzles you do with kids. You know the ones with different types of vehicles or of the different sizes of circles; small, medium, large etc. Bear with me, I've been a mommy, a babysitter, a preschool teacher and a nanny...wooden puzzles are my thing. And you know that the choo choo train isnt going to fit in the dump truck spot. It's not going to happen. But sometimes you get stuck with the puzzle with those different size circle shapes. And the small wooden circle isn't going to bump up against lots of points and angles and such like the vehicles will, it's going to sit in the midst of the size large circle...but it won't be suffice. It will not fill up the space needed to be correct and that my friends is why Bittersweet doesn't work for me. Why it tastes sour on my tongue. It doesn't move me. Why I chose not to use it.
It is not suffice to fill up the magnitude of emotions...it minimizes the sweet part of expecting and it minimizes the bitter part of losing Piper. When verbalized, it simply sits in the correct space but won't fill it out. It's too small...it needs to be Agonizing-Jubilation or Devastating-Elation or Miserable-Happiness. Those work. Perhaps not quite as pretty to say but much more apt to be used, my friends.
Those fit the range of emotions. The depth of sadness or despair of losing Piper in direct correlation with the excitement and joy that comes with expecting #3 (and raising Linley).
Perhaps that sounds too complex but the reality is that my life now is a terrific mess of complex emotions. One word, Bittersweet, will not work. It's too small...perhaps in the right line of thought but grossly insufficient.
So no, this pregnancy (and the role of raising Linley) is not Bittersweet. It's excitement unleashed to be allowed the blessing of new life. And it's heart crushing sadness that requires me to do so without Piper in the picture.
Complex.
Chaotic.
Deep.
Not ever, ever, ever Bittersweet.
Not ever so trivial.
That pretty much caused me to mull that word over and over. Bittersweet. I wasn't sure why it didn't quite fit the image and feelings and experienced we have had or are having. Why it left my mouth twisted or my stomach unsettled...but it did. Each time it's mentioned.
So I mulled. I thought. For twelve weeks I have cried because I need a way, or a word to verbalize how all this strikes me because nothing, nothing quite causes a few emotions like holding a daughter while they die and then finding you are having another child one year later. But Bittersweet doesn't cut it...doesn't touch it.
Then I had an image of those wooden puzzles you do with kids. You know the ones with different types of vehicles or of the different sizes of circles; small, medium, large etc. Bear with me, I've been a mommy, a babysitter, a preschool teacher and a nanny...wooden puzzles are my thing. And you know that the choo choo train isnt going to fit in the dump truck spot. It's not going to happen. But sometimes you get stuck with the puzzle with those different size circle shapes. And the small wooden circle isn't going to bump up against lots of points and angles and such like the vehicles will, it's going to sit in the midst of the size large circle...but it won't be suffice. It will not fill up the space needed to be correct and that my friends is why Bittersweet doesn't work for me. Why it tastes sour on my tongue. It doesn't move me. Why I chose not to use it.
It is not suffice to fill up the magnitude of emotions...it minimizes the sweet part of expecting and it minimizes the bitter part of losing Piper. When verbalized, it simply sits in the correct space but won't fill it out. It's too small...it needs to be Agonizing-Jubilation or Devastating-Elation or Miserable-Happiness. Those work. Perhaps not quite as pretty to say but much more apt to be used, my friends.
Those fit the range of emotions. The depth of sadness or despair of losing Piper in direct correlation with the excitement and joy that comes with expecting #3 (and raising Linley).
Perhaps that sounds too complex but the reality is that my life now is a terrific mess of complex emotions. One word, Bittersweet, will not work. It's too small...perhaps in the right line of thought but grossly insufficient.
So no, this pregnancy (and the role of raising Linley) is not Bittersweet. It's excitement unleashed to be allowed the blessing of new life. And it's heart crushing sadness that requires me to do so without Piper in the picture.
Complex.
Chaotic.
Deep.
Not ever, ever, ever Bittersweet.
Not ever so trivial.
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