Tuesday, November 27, 2012

Survivorship ain't all that and a bag o' chips.

It's been a bizarre 24 hours.

Not long after dropping off The OffSpring at school yesterday, I get a phone call from the school nurse at Gregory and AnnMarie's school. She and I have a long history and I love receiving calls from her. Yesterday was different.

She was calling to give me a heads up. Over the Thanksgiving weekend, one of the kiddos in a neighboring classroom to Gregory had Scarlet Fever. What happened next still leaves me reeling. I had an overwhelming and visceral response to this perceived threat to Gregory's health. A metric ton of adrenaline dumped into my blood stream. My brain zeroed in, found the checklist in my database and went to work.

  • How close is the threat?
  • Check in with oncology.
  • What were his last counts?
  • How recently was his body under stress?
  • How did he look/behave this morning?
  • Will this child have infected any other students?
  • Look up Scarlet Fever.
  • How does it present?
  • What are the symptoms?
  • Is his pediatrician prepared to treat Gregory aggressively enough for his unique situation?
  • If he does develop Scarlet Fever, is an admit imminent? 
  • Who will care for the other kiddos if we are admitted?
  • How in the H-E-DOUBLE HOCKEY STICKS am I going to handle something like this while going to school, myself?
  • Don't panic. Get information. Breathe. Exhale.
All of this flashes across the membrane of my brain at light speed. I can feel my feet dig into the floor. My hands and pits start sweating profusely. My gut sinks and my heart races. I fight the overriding urge to go claim him from school, this very second. Without delay. The walls go up and I find myself in Warrior Mode.

After getting what questions I could answered, I start to come down. Start to. Then the shakes begin and I pop a giant headache. My pits drenched. Tears are threatening to flow. 

Shit. We have had months of bliss. Yet, my body remembers. It's automatic. I have no control over it. Really, I don't. 

Don't tell me Scarlet Fever is simply strep. Strep can turn into Scarlet Fever in people who's immune systems are less than normal. Hello? That is my kid. Will forever be my kid. Regular illnesses are no longer 'regular'.

My brain realizes that he will, most likely, be OK and never even get close to contracting this. My body and my heart need to catch up. I can't seem to shake the headache and I find myself weeping at the slightest lowering of my guard. As I went to sleep, last night, my neck and upper back ached like I had lifted weights all day. 

The threats are real, we cannot hide from them. I am really trying to live with a balance between being protective and being free. These things sneak up and take my breath away. I am learning how to parent and caregive to a bone marrow transplant/cancer survivor. Learning how to establish a trusting relationship with his pediatrician. Trying to figure out how to manage Gregory's bodily demands, demands that we have zero indication as to what they will be. It is an intricate dance. 

Then we have a moment. THIS is what I am forever fearful of losing. DEATH is my biggest fear. I know we are all susceptible to having this happen to anyone of us. Yet, there is something unique to having stared death in the face, manage to skirt it's clutches and realize that it is still waiting around the corner. No. I am not negative or morbid. I live in the brilliant light of life and gratitude. I also dwell in the dark places. We all do. 




I NEVER want to forget that belly laugh.

Covering you in love,
MindiTheMagnificent
~Momcologist

Tuesday, November 13, 2012

Healing deep wounds.

Sister, Sis, Sissy, AnnMarie~

Hello, darling. It's late at night, on a Monday in November, 2012. You are slumbering away, in what I hope, are sweet and peace filled dreams. I am just now, finding space in my heart to devote words, now and again, to nothing but you. I had intended on writing to you in this fashion, from the time that you were born. I originally started with old fashioned pen and paper. That was so very short lived. I have a tendency to freeze on paper. Life became busy, Gregory arrived and live became chaotic.

Then in February, just two weeks after your seventh birthday, Gregory was diagnosed with cancer. This you already know and feel oh so acutely. It was at this point that I all but abandoned you. My physical and emotional presence in your life ceased to exist, for quite some time. It is now nearly four years since then and I am just now trying to find my way back to you. It's not been easy.

Over the years, I am hopeful that we will be able to have frank conversations about what has passed and how it still affects our relationship and the woman you will one day become. I struggle with connecting with you. You need and deserve so much more than I find myself able to offer to you. I struggle with being the mom you want me to be and being the mom that I am. I sometimes feel like I fall so terribly short in your expectations.

You have a gigantic heart and free flowing, lofty dreams. I want to feed your heart and soul, but still keep you a bit grounded. There is plenty of my own baggage that comes along for the ride in our interactions. I want you to be a woman who is strong, confident, independent, loving, open, practical, with a touch of big dreams. Someone who not only follows her heart, but listens to it in the quiet moments. A woman who is not afraid to look herself in the mirror and say to her reflection: "I love you."

I wonder how the last four years have hindered that development. I wonder how I can show you that I love you. I wonder how I can offer you the security that you so desperately seek. Seven years old is such a tender age to be abandoned by your mother. It is such a young age to have your touchstone yanked from your life. Especially in a situation that pulls her to focusing 100% on your little brother.

At the risk of sounding harsh and unfeeling, I will tell you this: It was the only choice I could make. Given the same circumstance to repeat, I'd make the same choice. Even with the knowledge of hind-sight. Harsh, I know. It was not a choice that I had to ponder, either. It was visceral and innate. Gregory was facing death. You were alive and healthy. You had Daddy, Nana and Papa. Not to mention our extended Montessori community. While they are not a replacement for your mom, they were there for you in ways I could not be.

My heart and my head reasoned it through. It was better for our family for me to focus 100% on Gregory for a short time. Offering him the BEST opportunity to survive and recover. Versus a lifetime of the four of us living without him. It may not have been logical. I would like to think that my singularly focused attention to Gregory did help in his survival. The truth is, I don't know. I'm beginning to think that this way of thinking was my way of bargaining and appeasing my own guilt at having to leave you. Pleading with The Universe that if I sacrifice my relationship with you and Curtis, then we might get a chance to keep Gregory a little longer. I don't know, sweetheart. I can't look back with regret or question the decision that were made. In fact, I don't.

My biggest overriding feeling when it comes to you, is an ache tinged with grief over what we missed out on together. Half of first grade, all of second grade,a large part of third grade, most of fourth grade and now, you are in the fifth grade and I am beginning to find my way back to you.

I'm hopeful that by writing to you like this, I will also be able to talk to you now. I'm hopeful that it will enable me to be a stronger presence in your current moments. I cannot undo the past. Yet it is there between us. I can only support you now and be there for you when your heart crosses places that hurt.

When I pictured my family, I had always imagined having just one daughter. You. You are that one daughter I always wished for. Today, I only wish that the years had been easier for us. They weren't, though. We were handed this really crappy and hateful thing called childhood cancer. You suffered right along with Gregory. You and I will get through this.

Five minutes at a time.

I love you, young lady. With the fire of a million burning suns.
~Mommy

Your seventh birthday. February 5, 2009
P1000257


NaBloPoMo November 2012

Monday, November 12, 2012

Squandering is not an option.

Five slight fingers, a three inch palm. The trust of a child who knows he is loved and secure. My hand wrapped warmly around his soft little hand. Reminding one another that we are OK and we love each other. This bond between Gregory and I is strong and unique.

Gregory had an appointment today to have two of his upper teeth pulled, to make room for his front two adult teeth. The last time he had a procedure at the dentist it did not go very well. I'm hesitant to admit that the dentist actually made me feel a bit small and belittled Gregory a bit. Maybe we were overly sensitive at that point in time. Maybe what we have been through just plain makes us sensitive to certain things. This experience, combined with Gregory's history, contributed to a bit of PTSD today. For both of us.

As Gregory was climbing into the dental chair, the panic, fear and anxiety started to settle in. Thankfully the assistant today was perfection. She did her best to calm Gregory, but I knew he just needed me close. I did what I do best. I climbed right up into that chair, straddled it backwards, stroked his legs and feet, simply offering my presence. As they were applying the nose piece for his 'Happy Gas' I could see thoughts flit across his face. He asked about 'Sleepy Medicine'. Having been sedated only three weeks prior, things were awfully close to the surface. We assured him that today he would not need Sleepy Medicine, just Happy Gas to help him relax. Once the nose piece was settled, he started to cry and bravely wiped away his quiet tears. Taking deep breaths to calm himself. At this point there really is not much I could do to help him. I just have to let him work it out. Which he did, though it did linger for the rest of the day.

This patient and compassionate dental assistant was also in the OR on March 25, 2009 when Gregory had his pre-transplant dental work done. He had eight crowns and four caps placed that day. This protective placement of caps was THE BEST thing we could have ever done for Gregory's mouth health. As she was walking us back to the procedure area today, she confessed to having cleaned my teeth when I was small. It was a day of full circle memories.

The Happy Gas kicked in and he started chatting between the ministrations of the dental assistants. The numbing in affect, Dr Dentist arrived and gently removed the two teeth. Long roots and all. It was actually quite amazing to watch him perform the task. He was gentle and firm in the handling of those teeth within Gregory's jaw. After a few minutes it was time for us to go. Gregory picked out his prize and we left the procedure area. We gathered our coats and headed out the door.

Not being too sure about the expiration date on my Tylenol at home, we stopped at the store. As were were walking toward the store, Gregory had his little hand in mine. There was something so startling crystal clear in that moment. His sweet little hand felt to tiny in mine. Tiny, warm and secure. As I looked down at him, I had a wave of 'Don't forget this moment!'. This moment where we were both silently and subconsciously supporting and comforting one another. We were feeling reverberations of shared trauma. His upper lip was terribly numb and he was quietly talking with me about random observations. I couldn't tell you what they were. Only that his tone was very tender. A tone I've only heard him use with me during times of intense emotions. We were both feeling the past and the present.

He feels so very small to me today. I can't help but wonder what races through his mind during times like today. He was so terribly young during active treatment and his immediate recovery. So young to have to experience what he had to endure in order to have a chance at survival. Those memories and feelings lie dormant. Too young to process them and too young to really remember the details. Yet........ some part of him remembers. I witnessed it happen today, clear as day. So I continue to be his touchstone. The one to keep him grounded and secure.

What he doesn't realize is that he does that for me, too. If I begin to have a moment of selfish, silly anger, judgement, jealousy, pity or you name it, I spend a millisecond holding the wonderment of his survival in my mind's eye and nothing else matters. At this moment he is sleeping beside me. He still does not sleep alone. He will only fall asleep with me at his side. Selfishly, I'm not ready to give up this little luxury. There will come a day when he will not want to sleep next to his Mommy. Probably about the same time he quits calling me 'Mommy'.

For now, I will take what is offered and try to engrave these moments into my rememory. The little hand in mine, the cuddling next to me, the wanting to be close together, the sweet kisses and perfect squeezes. These things have been hard won. I'm not about to squander what's right in front of me.

Crying, AGAIN and thankful.
~MindiTheMagnificent
Momcologist


NaBloPoMo November 2012

Saturday, November 10, 2012

Tight in a bud.

I don't know how to talk to you. Should I be defensive, offensive or simply open. Aggressive, respectful, loving. I don't know and it's killing me, a little bit, everyday.

I want to be angry. I want to rant and rave. Spew words that have been trapped for entirely too long. Open my chest and fling this heart at your feet. It is so broken. It is tired. It needs a break and it needs to grow.

I have been respectful, given you space. I have been patient.

My body can't take it anymore.

You won't let me in. This is what hurts the most.

I'm tired of being the one to bend. The walking on eggshells. Being left to wonder 'what's next' from moment to moment, day after day, week after week.......

I'm ready to plan for tomorrow. I'm ready to think about next month. I'm ready to consider next year.

I'm growing. I'm healing.

I'll always be a bit broken. I'll always live out loud. I'll always need to be loved and know that I am loved. I'll always ask for more. I'll always question everything. I'll always plan for the worst, but expect the best. I'll always see the best in people. I'll always avoid conflict. I'll always live in love.

The day is not here, but it is quickly approaching.


"The day came when the risk to remain tight in a bud was more painful
than the risk it took to blossom." ~Anais Nin


Comments are closed.
~MindiTheMagnirficent
Momcologist


NaBloPoMo November 2012

Friday, November 9, 2012

Drive-by

Super quick Friday Night Drive-by.

AnnMarie has her craft fair tomorrow. she is putting the finishing touches on her items, creating signs and preparing a bit for work to keep her occupied while at her table. She has a friend staying the night and she will sit with her all day tomorrow to keep her company. THAT is a great friend.

Looks like Gregory will finally get his much asked for Red Wallaby this weekend.


Alright, Gregory. Nearly complete, just need to do the hood. <3

For kicks and grins, I leave you with animated OffSpring. Yes, we are pretty much goofy all the time.




Take a moment or two this weekend to show someone you love them. You never know.

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist



NaBloPoMo November 2012

Thursday, November 8, 2012

Bullets. The only kind I love.

It's been a long, full and emotionally taxing day. What does that mean for YOU??

The simplicity of bullet points.
  • Gregory had a fabulous day at school today, although quite ravenous. Illness, be gone!
  • AnnMarie is frantically getting ready to sell her wares at a Vendor/Craft Fair at her school on Saturday. Need some new jewelry? Drop by Jefferson Elementary between 9am & 4pm.
  • We decided today that she will have a St Baldrick's donation bucket at her table! 
  • Curtis is navigating relationships with the opposite gender and has willingly and thankfully listened to what I might have to say to help him out. Ye gads, he's a keeper! 
  • Washington State has passed a measure for Marriage Equality! *squee*
  • I register for school in the morning. Seeking my BSN so I can work bedside with kiddos and their families. (see how I snuck that one in there)
  • We had our first snowfall for the season today and Gregory was beside himself with glee. That kid is LIVING life.
  • Once again, essentials oils make it all better. Love me some Two-Sisters Apothecary
  • I've happily fallen down the rabbit hole that is Heritage Makers. 'bout damn time I started doing something with all my digital images! Flickr really could care less about the people I love.
  • The fact that I need a wardrobe over-haul became a bone of contention today. Someday. 
  • People are good. People are loving. People remember you. 
"A bell's not a bell 'til you ring it, A song's not a song 'til you sing it, Love in your heart wasn't put there to stay, Love isn't love 'til you give it away!" ~Oscar Hammerstein II

I'm off to find Dreamland. Catch ya on the flip side.

In honor, in memory, in defense.
MindiTheMagnificent
~Momcologist 




NaBloPoMo November 2012

Wednesday, November 7, 2012

How's The Greginator?

It's been ages since I have done a proper update on Gregory. Shall we begin??

To say that Gregory has been thriving would be a severe understatement. He started first grade this past September and has not looked back. His state of heal continues to flourish, while I still hold my breath.

He had his first quarterly oncology appointment in September. We met with his endocrinologist and discussed what was next in terms of his adrenal function. His oncology appointment was uneventful. Which is a fabulous thing. Through endocrinology we scheduled an ACTH stimulation test to check the function of his adrenal glands. He had been tolerating daily living without hydrocortisone supplementation, yet we were not sure how his adrenals would function when put under stress. ie, illness or injury

We went in on Monday, October 15 and he was given a drug through his port that would replicate a stress situation. Prior to, a blood sample was drawn to measure his 'normal' level. At the thirty minute mark, another sample was drawn to determine his response. Results came in the next day and they were down right perfect. Baseline was 4 and post infusion it went up to 21. Perfect response. Which indicated that his adrenal glands had returned to fully functional. A-may-zing. Seriously.

Also? This was THE LAST time that Gregory would be accessed through the port in his chest. The last.

We had the OK from oncology to get that puppy out. By a stroke of coincidence, there was an opening the morning of Monday, October 22nd. If you had not already known by now, Gregory is now port free. Completely device free, actually. Since he has a paradoxical reaction to Versed, they simply sent him off to dreamland via gas, then placed an IV in his hand for the procedure. It did not take long and Dr McCarthy was able to get the line out in it's entirety. She did a fabulous job of closing the incision and even excised the scar from the original placement before closing it up. It is healing beautifully and hopefully he will only have a slim, roughly 1 1/2" line of a scar. Thank you to the GVHD gods that there has been zero evidence of GVHD.

He stayed home on Tuesday for pain management and was off to school on Wednesday with his port in a container to show his classmates. Once again, they all thought it was pretty slick.

We have been chipping away at getting his re-immunizations finished. He only has three remaining, yet two of them I am quite scarred of how his body will react. On Friday, November 16, he will receive Varicella, MMR and Menactra. Yep. Two live virus vaccines. Holy crap. Honestly did not think we would get to give these a try. Crossing my fingers that he will have a mild reaction and bowing to all that is sacred that they actually take and give him sufficient coverage for immunity. Please, please, please........

You are going to love this one. A few weeks back, he lost BOTH of his top front teeth. On time. Developmentally on time. We are still not sure how his adult teeth will look when they fully arrive, so we are monitoring them like crazy. We do know that he does not have enough room and the neighbors to his lost baby teeth will be removed by the dentist this coming Monday the 12th.

Duh-duh-duh. Another one bites the dust. Another one down, another one down..... <3
Too stinkin' cute, if you ask me.
It has been fascinating to watch Gregory 'reclaim' his body. It's not conscience and so very subtle, but there has been a difference in him. A quiet pride, if you will. He is taking on a bit of age appropriate independence, but it has such an air of confidence. As if he is wearing a huge badge that exclaims: "I GOT THIS!" Which today, in this moment, he totally does.

Yesterday when I pick him up he had a bit of laryngitis. This combined with his demeanor let me know that he was working on something. He was uber compliant and lovingly did everything I has asked him to do. Not 100% completely normal behavior! He started to develop a cough and close to bedtime it took on that barking sound that comes with croup. My sensors went into high-gear. Thermometer, Vicks and rest. Thankfully he slept soundly through the night, stayed home today and it did not worsen. In fact, he will be going to school tomorrow. These days, his body is showing us that he is OK. His spirit is showing us that he is fabulous.

I take each new development with cautious optimism. Preparing for the worst and expecting the best. I made the phone call today to oncology to find out what his 'illness protocol' is, now that he does not have a port. The return phone call was both a surprise and an expected response. The verdict?

TREAT HIM LIKE THE OTHER OFFSPRING.

Meaning, if he has an illness, treat it from home. Which means he can have Tylenol again! If I am concerned about an illness, take him to his PEDIATRICIAN. If there is something after-hours and requires an ER visit, I don't have to call oncology first. Yep. We just cut a huge slice out of his medical routine. This will require a mental adjustment from me. The first time we get to test this, I will panic a bit. So will his pediatricians office, but I am well prepared for that scenario. His last round of immunizations was kind of a mess and I learned a lesson. I will forever be Gregory's Living, Walking, Talking Medical Record. *sigh* I will tell you that he is excited to have an excuse to visit our new Pediatric ER. It is due to open soon and the crazy kid wants to try it out. 'Cause, "Mommy, won't it be so much better and easier?"

In December he has a full eye exam, hearing test and oncology. Possibly another round of immunizations, too. I feel like there is something else, too, but I can't seem to put my finger on what it could be. Maybe it's nothing. I only think it's something because it doesn't feel like there is enough.

What did I tell you. He is doing so well, today. I am taking it with such gladness, awe and wonderment.

Today? Gregory is grrrrrrrreat!
MindiTheMagnificent
~Momcologist


NaBloPoMo November 2012

Tuesday, November 6, 2012

Can't do it without you.

NaBloPoMo ~ If you were President of the United States, what would be your first act in office?


Ha! Can you imagine? 

My first act? Pinch myself. Not my scene, thankyouverymuch. As hard as it is, I prefer the grassroots stuff. Not necessarily the underdog, but the community building and working together stuff. Ya know, like St Baldrick's Foundation

There is something I need you to do. I need you to click this link over at St Baldrick's and read about the Federal Budget Sequester and how it will affect TODAY'S kids that have been diagnosed with cancer and the research that is conducted through the over 200 Children's Oncology Group (COG) hospitals across the United States. There is an action step for you to do. Please. They need your help. Gregory is at a significant risk for a secondary cancer, he  potentially could need your help, too.

What? You say Chuck Norris is weighing in on childhood cancer?? Yep. Check it

  • "Though research in pediatric cancer has historically been underfunded, pediatric cancer investigators have been on the cutting edge of cancer treatments and cures for decades. In addition, many of the principles of therapy used in treating adults with cancer were first tested and developed at the pediatric level.
    Yet pediatric cancer investigators must spend a great portion of their time sniffing out funding for their projects, which takes them away from the research lab."

Not sure what I think about this, yet, but it sounds truly promising for our kiddos that do survive and wish to have children of their own someday. Before you get too worked up, please have a basic understanding about stem cells. These are NOT embryonic stem cells. 


The holidays are quickly approaching and I know several families that choose to make charitable donations in lieu of gifts. If that is something you do, or if you simply would like to make a donation to fund life saving childhood cancer research, I am still asking for donations on my bald noggin for St Baldrick's. 'Cause hair grows back. Kids don't. My donation page is here

Jason Winston George and I, post shave.
July 29, 2012 ~ Hollywood, CA

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist

NaBloPoMo November 2012

Monday, November 5, 2012

Corners of my heart.

Nablopomo ~  What are your thoughts about tomorrow's election in the United States?




Today's writing prompt. Yeah. I know. I seriously considered leaving a blank page. I'm not about to go into my political views. Suffice it to say, I cling to the idea of LOVE. *sigh* Wouldn't that be a fabulous platform?

********************************

On the drive home from school today, Curtis was sharing that he was sad. Sad because a friend of his was sad and there was little he could do to help her. This type of sadness is a prominent theme in my life.

I am part of a very rich and diverse community of families affected by childhood cancer. The statistic is: 1 in 5 kids diagnosed with cancer will not survive. Frankly, I believe that stat to be higher. To expand on this: I have roughly 1,200 FaceBook friends. I would conservatively estimate that 75% of them are childhood cancer families. Which gives us a figure of 900 to start with. 1 in 5 is 20%. 20% of 900 is 180. I have statistically 180 FB friends who's children have died. Frightening figure. Which means I have 180 friends who grieve, daily.

I was listening to my playlist the other day and Train's, When I Look To The Sky came on.


The lyrics triggered thoughts of my friends. How it is to live a life without your child. To live a life after witnessing the cruel death of your child. To muscle through constant triggers, wonder over missed milestones, question if they 'did everything they could'........ living with the tender soreness of grief.

I can't 'DO' anything for these parents I love so deeply. I only witness and offer love. They are as much a part of my daily life as Gregory is. I cannot look at his surviving self and not see the kids who are gone. I remember them, I speak their names, I carry them in my heart. 

Donna, Ryan, Julian, Rhema, Cole, David, Mason, Max, Tyler, Kamran, AJ, Michael, Nikki, Braeden, Anjali, Keeghan, Aidan, Kendall, Cameron, Christopher, Jack, Hope, Dylan, Davey, Jessica, Mia, Rayley, Nayelis, Terria, Cameron, Bobby, Jordan, Ethan, Ashley, Anna, William, Isaiah, JJ, Parker, Kelsie, Jiselle, Javeth, Callie, Arden, Ronan, Chase, Auston, Bryce, Elizabeth, Corey, Drake, Matthew, Cory, Stephanie, Landyn, Reid, Delaney, Declan, Jessica, Katie Ann, Layla, Armstrong, Caleb, Nicky, Brandon, Isaac, Gregory, Oliver, Ellie, Travis, Tyler, Katelyn, Salvatore, Makiah, Nick, Delaney, Elizabeth, Timmy, Shea, 

The names go on and on. They all occupy a piece of my life. 


In honor, in MEMORY, in defense.
~MindiTheMagnificnet
Momcologist

NaBloPoMo November 2012

Sunday, November 4, 2012

These Are Days


Goofy Saturday Mornings
Can't help but wonder how many families are witnessing this phenomenon today. <3



Quiet Moments before Giant Moments
Just before deportation. Oct 22, 2012


Buh-Bye! Three years, seven months, twenty-six days.
Whoop! There it is! <3

Gregory had his port removed Monday, October 22, 2012. It happened in quite a whirlwind of last minute happenings. On Monday, the 15th, he had a test to check his adrenal function. His bodies ability to produce stress hormones. Results came back on Tuesday and he blew the test out of the park. Completely NORMAL stress hormone production. Which means no replacement hydrocortisone or stress dosing.

We had the go-ahead to get his DEPORTATION scheduled. Talked with they surgeons office on Thursday and they had an opening for the following Monday. Just like that. Lickety-split.

Don't let the swift circumstances fool you into believing this was a last minute decision. Doc started this conversation back in May and it has taken all this time for me to completely embrace Gregory being port/central line free. It's almost like a security blanket. As long as he has it in place, should anything happen, we can act fast. It's removal forces me to surrender to the next phase of his health. Survivorship, development, milestones...... while still holding my breath. Keeping a look out for delayed development, late effects, subtle signs that something might be off.

While loading Gregory into the car after his surgery, the panic hit me. Along with a healthy dose of PTSD. My heart sunk through the floor of my pelvis, my heart rate zoomed, my breathing became quick and shallow. I felt light headed and my vision became extremely clear. This was it, there was no going back. Port has left Gregory's building. No safety net. I have to build an internal safety net. It's coming along. It will never be truly secure, but I hope the strength of the fibers and the holes improve with time. 

Gregory gleefully took his port to school to show his classmates on Wednesday and AnnMarie took it on Friday. Pretty fascinating stuff. 

These days have moments of fear, anxiety and grief. Mostly? These Are Days to remember. 

In honor, in memory, in defense. Still basking in Awe & Wonderment.
~MindiTheMagnificent
Momcologist







NaBloPoMo November 2012

Saturday, November 3, 2012

Picture Perfect?

Totally phoning it in today. Still figuring out the collage feature, this will have to do.

October Highlights



In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist


NaBloPoMo November 2012

Friday, November 2, 2012

Working THROUGH the kinks.

NaBloPoMo ~ If you could live anywhere, where would it be?

Digging my heels in over here. I have a strange relationship with dreams. They have been pretty non-existent for the last several years. This is one of those questions that can be easily answered if one has room in their life to dream or for someone who's dreams have not been beaten down year after year.

Odd as this may sound, I don't have big dreams for myself. Nor do I have big dreams for The OffSpring. I have simple expectations, with fervent preparations for any alternatives that may come about. I expect moments of joy, togetherness, a roof over our heads, food in our belly, love, community, enough suffering to keep us balanced..... Catch my drift?

There's that saying: "No matter where you go, there you are." No matter where I live, it will still be me living there. Changing my address or dreaming of a different one won't change how I live. If I could live anywhere, I would live BETTER where I already live. My heart would be less broken and more loved.

******

OK. OK. OK. This is so not working for me. It's not flowing and I'm forcing it. I let it marinate in my brain for several hours and I'm coming up dry. Why? 'Cause this is not the type of navel gazing I find much value in. Also, there are several things about how I am currently living that I have too much anger and sadness about. I cannot dream of something better, when what I really hunger for is for my current home to actually feel like a home.

I was not too sure how writing prompts would work for me. I have not quit. I'm simply acknowledging that I am not feeling this one. Saturday and Sunday are 'free' writing days. I'll get back on the proverbial 'prompt' horse on Monday.

Wish I could have given you more, but this is all I've got. 'til tomorrow.....

In honor, in memory, in defense.
~MindiTheMagnificent
Momcologist


NaBloPoMo November 2012

Thursday, November 1, 2012

Blood Letting

NaBloPoMo November 2012 ~ Tell us your favorite quotation and why.

“There is nothing to writing. All you do is sit down at a typewriter and bleed.”~Ernest Hemingway 

This is what writing has come to mean for me. Yes, I write for posterity. Yes, I write for advocacy. Yes, I write to keep you up to date. When it comes down to brass tacks, I write for me.

I write to hear my voice. I write to purge my heart, to bare my soul, to share a piece of me. What a better way to describe this very vulnerable and personal act than as a blood letting. My writing has coagulated. It is thick, sticky and scabbed over. I pick at it from time-to-time. It itches and I am desperate to pull back that scab and let the fresh blood flow.

I am afraid, though. I'm afraid of the mess it will create. I'm afraid that it will smear all over you and stain everything it touches. I'm afraid that when I see you in person, you will recoil upon remembering my words.

I'm no longer living out loud in isolation. My world is no longer confined to a hospital room, a clinic visit, a home with four walls. I'm branching out into the great beyond. Taking risks and stretching myself into the world of flesh and blood people. My courage now needs to grow larger to match my real life reach. I'm no longer safe behind the digital screen. My vulnerability is very much alive, but I need courage to let it flow. I need strength, too. Strength to handle the emotions, expressions and conversations that come from the words that spill from these fingertips. I know you are reading these words and we will cross paths, in flesh and blood. I want to invite you to the places I dwell.

I am learning how to live a life that can have commitments, while keeping the spirit of impermanence. Making plans, keeping a calendar that is not filled only with doctors appointments. Trying not to slip too much in either direction. Too much planning and I fear I will easily succumb to The Daily Grind. Living planned activity to planned activity. Not enough commitments and I fear free falling into nothingness. With nothing to tether me to the thing called living and finding myself just trying to survive each day.

The idea that I am trying to express is ethereal. I want to keep the wonderment and awe that I find myself in these days. I want to constantly and consistently remember that THIS moment is what matters. THIS moment is perfection. Even if it is filled with pain and suffering, THIS moment is the one that counts. I can get lost in this, though. So lost that I have not done any living. I have also found that it makes people uncomfortable. It takes people out of their comfort zones. It brings to light how much of our lives are lived on auto-pilot. Just doing enough to get by. I do not want to return to living in that fashion.

Consistent writing could possibly be my lynch pin between a planned life and one of impermanence.

Which means, I continue to bleed.


I got this.
~MindiTheMagnificent


NaBloPoMo November 2012