Hope4Peyton

I’m sure you were expecting sometime deep, remarkably thought provoking for my next post….but, seriously, I’m in Alabama right now and this is as good as it gets. Plus, I have plans to spend some great quality time with those aforementioned neglected kids.  But this just couldn’t be passed up.

Peter has been living here ALONE for almost 7 months now.  This is the basket of supertechgeekery found in his bathroom reading basket.  “How to be the supertechnogeek your friends will envy”, “Can your supertechnogeekness make it to the next level?”, and YES that is a ROBOT magazine there.  

I’m leaving right this second to buy him a Playboy.  

–Anissa

Dear Nathaniel and Rachael,

Although many, if not most, of the things I’m going to talk about here were far beyond our control, our ability to do differently and no one’s fault, I feel the need to address them.

I’m sorry your sister got cancer.  I’m sorry for what this meant for the past years of your lives.  I’m sorry your childhood was marred by the knowledge of cancer, chemotherapy and loss.  I’m sorry for the time that can never be regained and the innocence forever gone.  I’m sorry for all of us, but especially you.

I’m sorry I asked you to be forgiving when your sister treated you in ways that would have gotten a stranger laid flat out with a mama-given sucker punch.  I’m sorry that you had to be afraid in your home, fearful of awakening the beast that slept inside your sister more times than I can count.   I’m sorry for the times she yelled hatefully at you, pinched you, made ugly faces at you and generally made your life a living hell. I’m sorry that you lost that sweet baby sister for so long, to have her replaced with the angry, cranky, sick child that came home from that first hospital stay. I’m sorry that THIS became your new normal life.

I’m sorry for the mornings I wasn’t there to make your lunch and kiss you goodbye in front of the school.  I’m sorry for the nights we had to say goodnight over the phone and I could hear the tears you were so bravely holding back….or not holding back.  I’m sorry for the times when you woke up in the night to find that I was gone with your sister to the hospital, the days you were picked up from school by someone telling you that we were inpatient. I’m sorry I wasn’t there every bedtime to hug your freshly bathed body and get a toothpasty kiss. I’m sorry for the nights you went to sleep wondering what was happening, what was wrong with your sister and I wasn’t there to explain and comfort.

I’m sorry for the menu plans that heavily rotated around McDonalds and Cracker Barrel.  I’m sorry for the mornings we woke up to realize there were no clean uniform bottoms and you had to wear the least dirty ones to school.  I’m sorry for not realizing your shoes were too small until they’d given you a blister.  I’m sorry for the mornings you woke me up instead of the other way around.

I’m sorry for the times you felt jealous when cards and gifts came for your sister and you got nothing.  I’m sorry for those moments when you stood there unnoticed as another person asked, “How’s Peyton?” and didn’t ask how you were doing.  I’m sorry for the times when your own friends said hello to Peyton first and oohed and ahhed over her when they should have been clustering around you.

I’m sorry for the last-minute book reports and projects that were forgotten. I’m sorry for the field trips and competitions and sports days that I wasn’t there to be a part of and to cheer you on.  I’m sorry for the day you lost that math competition and needed me to hug you and tell you how proud I was of you for even being chosen to go but I could only talk to you on the phone. I’m sorry for the cupcakes I couldn’t bring, the cookies I didn’t bake and the class parties that I made you take Publix baked good.  I’m sorry for the birthday parties we missed, the playdates we couldn’t make.

I’m sorry for the times I bought gifts to keep you busy instead of spending the time with you that I should have.  I’m sorry for the nights when I didn’t have any more to give than to kiss your lips goodnight and tell you I’d read you a story the next night.  I’m sorry for the many MANY nights your sister was allowed to sleep in our bed and I told you that you couldn’t.

I’m sorry for the too-many-to-count trips to the hospital.  I’m sorry that you had to see your sister sick, weak, looking rather scary.  I’m sorry for the times you had to eat hospital food for dinner, but those cheese sticks are pretty good.  I’m sorry you had to watch your sister go bald, get fuzzy, go bald again so many times.  I’m sorry you had to learn that cancer kills people and understand that your sister had THAT.

I’m sorry you had to see and hear me cry so many times.  I’m sorry I wasn’t a stronger mother and able to suck it up until I was alone.  I’m sorry you had to make friends at support group who could identify with what your life was, although those are super friends and you would have loved them anyway.  I’m sorry for the times you comforted me and were responsible for the only bright moments in my day.

I’m sorry for the times I yelled, snapped or barked at you for minor things. I’m sorry that I projected my anger and frustration at our situation onto you way too many times. I’m sorry for all the times I was at the end of my rope and left you dangling by a string. I’m sorry for the times I should have spent time with you and I had to leave instead, had to go do something for me.  I’m sorry I couldn’t be the mother I should have been over the past 24 months, that I had to focus so much of my attention on your sister and never had enough for you. I will be eternally sorry for that.

I’m sorry for those conversations about Heaven and where our friends went….you’ll never know how sorry I am for that.  I’m sorry that you have to understand what death is. I’m sorry that I couldn’t put it all back together. I’m sorry that you lost that “my mom can fix anything” way too early in life.

I’m so sorry that I can’t tell you it’s going to be ok.  I’m sorry I can’t tell you that our lives will ever go back to normal. I’m sorry that I can’t promise you that your sister will always be with us.  I’m sorry that when you ask me now, I can’t promise that your world will ever be right again.  I’m sorry I can’t tell you the cancer is gone for good and will never come back, I wish I could.

I hope you know that although it might have felt differently, I love you two every bit as much as it is possible to love another human being, as much as I love your sister.  You are just as precious, treasured and adored.  I am thankful every day for the privilege of being your mother and I could not have gotten more perfect children.  I pray that someday you will understand what happened during this time and that you will be forgiving of the many upsets and mistakes that were made.  Mostly, I just pray that you always know how much you are loved.

Love,

Mom

I’ve spent the day back and forth between my computer and packing for the kids and me to leave for Alabama.  We were supposed to leave today but mommy had a little too much fun Saturday night and decided to sleep in today.  Don’t judge me!

Last night I met up with some friends from the Children’s Cancer Center at a party to celebrate Warren Sapp’s retirement and the ticket sales were benefiting the CCC.  If that’s not a reason to go out and have cocktails, what is?   The party itself wasn’t that exciting, the most interesting part of that being when we mistook Warrick Dunn for Warren Sapp…because obviously we are HUGE football fans, right??  Still, we managed to have a lot of fun because we cancer parents don’t get out a lot but when we do WATCH OUT!  The party was held at the Hard Rock Casino and I’m proud to say I played the slots and won! Yessir, I put in $20 and came back with $20.30 cents.  Pretty proud of THAT.

But after the night had ended and I was on my way home, I realized I was tired…not like tired tired but EXHAUSTED to the point of I-want-to-just-lay-my-head-on-the-dashboard-and-drool-til-sunlight tired.  I am old! I am not meant to be up that late anymore. I have to suffer through enough late nights with Peyton’s neediness and I should really be in bed, sleeping at 2:30 AM if I have a choice in the matter. This thought was quickly reinforced by the fact that when the neighbor’s college age son started his thumping, basing, hard beating music that darn near shakes the windows of my house, I opened the door and yelled, “Turn that crap down!”

Then had to sit down for a minute because the rush of grown up adrenaline had made me a little dizzy.

Tomorrow we head for the great north….Alabama.  We’re taking computer equipment, the Wii and stuff to keep us busy in case the Wal-mart closes down while we’re there.  Considering that we went for a cookout and there was gunplay involved, I’m eager to see what the 4^th of July is going to bring about.  I’m thinking about investing in Kevlar jackets for the kids.  “No, honey, wear the ugly jacket. It’s ok, all the K4 kids in Alabama wear them!”

We are headed to Calloway Gardens for the actual 4^th weekend, courtesy of Peter’s wonderful mother, Sharon.  Thank you for that, I would bet money there’s going to be a Starbucks somewhere around there.  It looks like a gorgeous time with pools, gardens, and a butterfly house.

Speaking of…cleaning is bad. VERY bad.  Trish is the lady who comes and makes sure our house isn’t condemned because mommy’s a bad housekeeper.  The woman is a cleaning dynamo, she gets more done in 2 hours than I could finish in a day.  About the time my M-I-L starts to worry about the kids safety, she sends Trish over to dig us out.

Trish came over this past week and worked her mighty mojo and in the process, put the butterfly container on a shelf.  But she didn’t put it back where it was supposed to be…which was the table….because if we don’t see them, we might forget to feed them.  Are you feeling where this is going?

She came on Wednesday and Rachael remembered yesterday that we were butterfly caretakers.  Oh yes. Two of the them were laying on the bottom and the other three were flying around weakly.  We killed the butterflies.

I can almost see the t-shirt now “Every time Anissa cleans, a butterfly dies.”

So, today we released the final 3 butterflies into nature, where hopefully they’ll be safer in the wild than in our house.  Each child held one of the remaining butterflies in their hands and we said a prayer for our sweet friends.  Then Delaney Sierra, Mathew and Hannah Kaylie were all let go.  We were supposed to have 5 butterflies, so they got middle names too.

I have to tell you that Peyton was not getting into the spirit of the moment because she was all, “I want to name mine Polly!”

“No, Peyton, that one is Delaney Sierra. Remember? For our friends?”

“They have butterflies in Heaven, I’m calling mine Polly.”

Well, alrighty then.

f.r.o.G.

–Anissa

When Peyton was first diagnosed with Leukemia, we were encouraged to stay away from playing “Dr. Google”. The nurses told us that it would only scare us more than we were, they handed us a book that was written some 15 years ago, and left us to our own devices….which of course included playing Dr. Google. I spent hours and hours searching frantically for resources, for ideas, for anything that would make me feel more confident with something so out of our comprehension. Please, please return me to a sense of normal, please let me find some article that will give me back some control, please give me some idea of what to do now!

Yeah, I know, pretty big expectations of a search engine, right?

But it’s what we do. The doctors spend years in school, in practice and they know their stuff. However, I did not spend years in school or practice and all of a sudden I’m responsible for making decisions that are life and death for my child.

I am woefully unprepared. I am desperate for understanding. I can’t make a decision when I don’t even understand the words you’re saying. I’ve always told the doctors to talk to me like I’m a complete moron, incapable of comprehending anything more than 4-letter words. Because when it comes to my child and her disease, I AM!

Some of the greatest advice I got was not from doctors, but from other parents. The people who’ve stood in my spot and been through this before, they can get what I’m feeling because they KNOW. They offered good advice, they understood my fears and anxiety, they were wonderful to bounce ideas off of. Being diagnosed in Tampa was the best thing that could have happened, because we have a tremendous community of families and a support system unknown anywhere else.

But over time I would hear from families that don’t have that kind of support in their area, they would tell me how they wished they had people to talk to the way we do, that they had a community. Other friends told me they wished that there was a way to make parent information and resources more easily accessible, saving families precious time. Some parents have had to be their child’s advocate, searching for treatments, finding the options, looking for every possible chance, and they want to let others who are in the same situation know what they found.

The One Voice Project.

It is the brainchild of an amazing group of cancer moms and I’m lucky enough to be able to help launch this project. This is going to be a site for families of pediatric cancer BY families of pediatric cancer. I hope this becomes a site that encourages and supports families, offering them the chance to be helped and to help others. Our goal is to also enable the parents of these kids to be involved in advocacy programs to raise awareness o fthe critical deficiency in research funding for pediatric cancers.

There is an open invitation to parents and caregivers of children at any stage of the cancer battle to come check it out, become a member and share it with your cancer friends. It is for families in treatment, beyond treatment into survivorship, and bereaved families. Everyone’s experience is valuable and will be a resource to someone.

It’s exciting stuff!

f.r.o.G…fully relying on God
—Anissa

A few years ago, my friend W swore that she was done having kids.  DONE! Closing up shop! She was thrilled to announce that her husband had set up an appointment for the great snippity-snippity.  It wasn’t too many weeks following that declaration that she stopped by me in carline at school, with the most disgusted look on her face and said, “I’m pregnant.”  I saw how distressed she was, knew how much she did not want to have another baby and in my utmost sensitive manner….CRACKED right up!  Yes, that’s me, the Great Comforter.

I sat with my two kids in the car and chuckled all the way home.  I did feel bad for a while, especially as it took her a while to get over the irony of her husband knocking her up just days before his surgery….I do remember her muttering something along the lines of “….stupid, panicked, baby-makers”.  Eventually, she was a bubbly ball of prego-goodness.  And I was still giggling under my breath.

Until I ended up pregnant.  And she nearly had an aneurysm laughing over my karmic slap-down.   Since that day, I’ve made an effort not to take too long laughing when things happen to my friends, especially stuff they don’t find funny at the time.  I can’t help it some times.  And I ALWAYS get smacked down for it in the end run.

Yesterday I had a good little laugh at my friend Natalie’s latest post which was this whole thing about putting a stamp on a letter, getting distracted and then not being able to find the stamps for the second letter…they ended up being in the cabinet with the cups.  I’ve been there, I know how under normal circumstances that’s annoying….when you have a sick child, your ability to cope with the least little glitch in the norm is stretched beyond comprehension…it’s catastrophic in epic proportions.  I felt bad, but it didn’t stop me from my little blurp of laughter.  But I can do that! I too am stretched! I have done that! I found a softball in my freezer for the love of Joe.  I can laugh, right!?

Apparently not.

We had a long clinic visit as we were hanging out with a friend who had their first appointment and it was anxiety-filled and we were there to show that the finger poke process wasn’t bad at our clinic.  But what it did was cause a chitter chatter distraction and I kid you not, I was one foot out the door…ready to go…keys in my hand…before  it dawned on me what I was about to do.

I forgot Nathaniel in the waiting room. 

Yes, I did.  I walked out of the room, down the hall and darn near out the exit without remembering to go tell my son we were leaving.  My only redeeming moment was that I did manage to make it sound like it was totally HIS fault with my, “Yo, dude, are you coming or not?”

I’m clearing up a spot on the wall to hang my “Most Amazing Mom of the Millennium” plaque.

In fact, I’m sooooo goooood at being a mother that I got to have THIS conversation with Peyton.

“Mommy! Your bedroom looks really different and clean.”

“Yes, that’s because I picked up all the laundry and took it out to be washed.” 

Long pause, tilt of the head while processing that and a wrinkle of nose. 

“ For really?”

“Yes, for really.”

“Wow.” Breathed in a tone saved for those people who have to cut off their own limbs to extract themselves from a life-threatening accident…because I finally did laundry.

Yessir, that plaque will be here any time now.

f.r.o.G.

–Anissa