Sometimes being a brother is even better than being a superhero. ~Marc Brown

Dawson was never particularly excited at becoming a big brother.  Even when she was born and the first thing everyone said was that she looked just like Dawson – he wasn’t excited.  He especially wasn’t excited when she came home and cried basically non-stop until she was a year old.  He got mad at her when she used to move his matchbox cars that he had so meticulously set in rows.  And the one time he was really really sick – like go the ER with bronchitis sick – she one upped him and had an emergency appendectomy the same day.

But despite all the outward displays of displeasure at our decision to provide him a sibling he truly loves his sister.  When he was about five years old he and Teagan were playing in the PlayPlace at McDonald’s (a.k.a. Fight Club for Toddlers) and a little boy came up and sucker punched him.  He was shocked/hurt/scared – no kids he had ever played with before had just walked up and punched him.  So he started out of the play place, not exactly crying but not sure what the heck had just happened.  He got about half way out and went back for his sister and grabbed her hand and started leading her out too.  He was hurt and had a quick path out going down the slide but instead turned around and went back for little one year old Teagan to make sure the bully kid didn’t hit her to.

So when you find out that your little sister has a brain tumor – the little sister that you wished would have been a puppy instead of a baby – what do you do?  I don’t know.  I know that you get thrown into this terrifically confusing world of hospitals and doctors and surgeries – a world that your Mom & Dad are having trouble understanding and explaining.  And if Mom and Dad are having trouble handling it – how do you handle it at age 9?  I don’t know.  If Mom and Dad feel hurt, fear, guilt, anger, anxiety, lonely, exhausted – how does a 9-year-old cope with those same emotions?  I don’t know.

The reason I don’t know the answers to these questions is because Dawson does not talk about it.  He never truly “acted out” in any way – occasionally he might get mad or angry about something but it wasn’t like he was holding his breath until he turned blue or breaking things or anything.  I can’t remember why I was picking him up from school one day –  he was sick I think – and his lovely 4th grade teacher met me in office.  His teacher pulled me aside and informed that Dawson seemed to be struggling a bit and while he understood our family’s situation and our need to take care of our daughter that we shouldn’t ignore Dawson.  The total shock that someone had actually just said that to me didn’t quite hit me until I was in the parking lot – which is a good thing because had it actually sunk in completely in the office I’m pretty sure the teacher would have suffered a black eye …. or two – maybe a broken rib.

I was devastated.  See this was just a few short months away from our chemo treatments being complete.  So, according to his teacher, I had been failing my son for about 16 months at this point.  The next day at chemo I reported this to Dr. Goodman and Ms Molly who immediately told me that no one should have ever said those things and the person who did was horribly underestimating our situation.  They comforted me and that made me feel better, but I’m still not 100% convinced that there wasn’t some truth in the teachers words.  Guilt is my friend.

From nearly day one of this long strange trip I’ve said that it probably had to be the hardest on Dawson.  I gave him things to read that were written by other siblings of cancer survivors who talked about their feelings like feeling guilty that they were healthy or feeling upset because they weren’t getting enough attention and then feeling guilty for being upset.  He looked at them.  He would always listen to me when I told him I knew this was hard for him and it was OK if he felt left out, or angry, or guilty, or mad.  He would just shake his head.  But he’s never commented on the situation.

So since I’ve spent a month talking about Teagan I felt it was only fair to give Dawson a little time.  Throughout the whole 18 months that Teagan was going through treatment he never really treated her any different.  He was still her big brother which meant he could boss her around if he wanted to.  And the current Love/Hate relationship that they have now was only strengthened during her treatments.  For those who don’t know how their Love/Hate thing goes they are either best pals who are trying to outdo each other   or they are screaming at each other and slamming doors.  There isn’t any in between.  And as a parent I can’t tell you which is worse.  Dawson never treated her any different – he just acted like everything was normal.

He gives her encouragement when she needs it.  He’s pushed her in occupational therapy and more recently in soccer to do better and try harder.  He has stood up for her when someone makes fun of her – because in his mind he can tease her but no one else can.  He rarely tells his friends what’s “wrong” with her when they ask why her arm and wrist don’t work right or why she walks with a limp.  If anyone gets credit for keeping her “normal” it’s him.

And even though now it’s a daily coin toss to see if they are going to get along or be at each others throats you can still see that she looks up to and admires him.  And he does love her even when he wants to kill her for turning the channel on the TV or taking his Xbox controller.  He still is the kid that turned around and went back into the PlayPlace to lead his sister to safety — I think through this whole thing that’s really all he’s ever wanted to do.

the foursome: Princess, Dawson, Bam, Teagan

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I don’t need easy. I just need possible. ~ Bethany Hamilton

In 2003, 13 year old Bethany Hamilton was attacked by 14 foot Tiger Shark while she was surfing near her home in Hawaii. She lost her left arm just below the shoulder, but survived the shark attack.

In 2008, 5 year old Teagan Baughn was walking around Hinkle Field House in Indianapolis while her brother was at baseball camp when she saw a “PASS IT ON” poster of Bethany Hamilton. It shows a picture of Bethany in a blue tank top holding her surfboard with a giant shark mouth shaped chunk missing and it said “Me Quit? Never!”

“Mommy, that girl on the poster doesn’t have an arm.” She said.

“No, she was surfing and a shark attacked and bit her arm.” I replied.

“Does she still do surfing?” She asked.

“Yes.” I said.

“Well if she can surf with one arm, I can do stuff too ‘cause I still have my arm.” She said.

“Yes, you can.” I said.

That was all she needed to know. From that point on, in her mind, she could do whatever she wanted to even if her left arm didn’t work properly. Because the girl on the poster didn’t even have a left arm and she could still surf. So softball, soccer, roller skating, swimming, riding scooters – those things became do-able. No matter how complicated, or how much modification had to made so she could do them – she did them. And she still does them — with the exception of softball because the girls have gotten a lot bigger and can hit a lot harder and she still isn’t great with catching and throwing one-handed – that was a mom rule out for safety. And a highly unpopular mom rule I might add. She has bugged me non-stop this year to go back to gymnastics because her friend Savannah can do 1-handed cartwheels.

We’ve told her time and time again she doesn’t have to play sports if she doesn’t want to. We’re always afraid she’s trying to live up to brother. But she keeps bringing up things she wants to do or to try. This summer Dr. Goodman said just to let her keep doing whatever she wanted to do. She suggested that a lot of brain tumor kids do martial arts. With Teagan, that frightens me. I suggested swimming, unless she swims out of her lane there are no other kids to injure.

We tried last year to read the “Soul Surfer” book, but it’s a little out of her reading range. And we’ve watched the “Soul Surfer” movie. She will tell you she likes the movie but it’s scary. She always says the shark part is what scares her the most but I catch her crying here and there – like when Bethany pulls the left arm off her Barbie Doll. It really is an inspiring story but it’s one of those that triggers a lot of emotions. There have been some movies and books I just refuse to watch or read because the slightest thing can trigger an avalanche of emotions.

Teagan has never forgotten that poster in Hinkle Field House. I think if nothing else it gave her hope that despite her disability she could do the things she wanted to do.

About a month ago, completely out of the blue, she told me she wanted to learn how to ride a horse and go surfing. I told her she could talk to her aunt about riding horses. And one evening I picked her up from my sister’s house and she told me all about riding Sierra (I thought she’d forget about it, or she was joking). When I asked her why she passed on surfing lessons when we were on vacation she said it was because she thought she would have to go out in the really deep water – she didn’t know they did the lessons close to shore. Then she casually mentioned she might be afraid of sharks but she still wanted to surf.

Surfing…. Swimming…. Soccer… Horseback Riding …. Karate (gulp)…

She’s wants to do them all. And, again, she keeps asking about going to gymnastics.

There’s no stopping her. And that’s a good thing. All because she saw a girl with no left arm who surfed one-handed.

The poster…..

Bethany Hamilton now age 22

 

One must not let oneself be overwhelmed by sadness. ~Jaqueline Kennedy

I had no ideas for my blog tonight.  There are probably things I could share about what “life-after-chemo” has been like, but like I said yesterday it has been a bumpy tumble down and I’m not in a particularly over-sharing mood.  I have to admit that reliving all of these things this past month has been harder than I thought.  There are so many feelings to sort through – and sometimes 5 or 6 of them fly by in one day.  Guilt, Fear, Sadness, Happiness, Anger, Loneliness (that one is kinda hard to explain), Hopeful, Hopeless, Anxious, Proud, Grateful and Overwhelmed.  It’s been a lot to go through the past 27 days.

So since I’m not in a oversharing mood, and I’ve run out of Caring Bridge pages to refer to.  I found a few other references from back then and there are things I forgot along the way.  So that’s what I’ll share tonight.  Some are oddities, some are things I really had forgotten, some are silly things that I still do today….

  • Day 1 at the hospital:  When you walk in the lobby at PMCH to your right is a large wall hanging with lights, it looks pretty but the best part is there are four floor tiles that you can step on that make noise and the lights then correspond to the noise.  One is birds chirping, one is waves crashing, one is some kind of happy/sunny thing and the last one is a crack of thunder with a bright flash of light followed by a grumble of more thunder.  As I was leaving on Day 1 I unknowingly stepped on a trigger floor tile …. yep thunder & lightning.  And to this day…. I only step on the thunder & lightning floor tile.
  • Day 2 at the hospital:  I discovered the fountains.  There is one right by the door when you walk in the lobby.  It’s blue/glassy/artsy looking.  When you toss money into it there is a motion senor that sets off what sounds like a dolphin trill/whistle.  I passed it everyday for 10 days and never went past it without tossing a quarter in and saying my “wish” — “Please let my daughter be OK.”  There’s a larger one in the main part of the hospital, the one Teagan calls the fountain room, with the bronze animals and nuns.  I started pitching quarters in it too.  I walked around with at least $5 in quarters every day.
  • Day 6 in hospital:  Actually this occurred at night.  About 1130-midnight as I was tossing and turning on the futon/couch thing that parents sleep on Teagan sat straight up in bed from a deep sleep and asked “Mommy do you believe in God?”  That freaked me out.  What made her sit up in the middle of the night and ask that?  Was it because we were in a Catholic Hospital full of pictures of nuns and a crucifix over the door?  Was it because people kept saying they were praying for us?  Was it because one of the chaplains (or maybe a nun… hard telling because they don’t wear the typical black “Sound of Music” type habit anymore) had visited earlier?  I don’t know but after she went back to sleep me and God had a lengthy conversation. There are a lot of questions at first… for God, for doctors …..and not a lot of answers. Answers come in time and they are not on your time schedule.
  • Day 7 at the hospital:  Dave stayed the night with her after her surgery.  We rotated every night and he just lucked out that he drew surgery night.  Dawson and I went home, I’m sure we stopped somewhere and ate dinner because his love of all fast food blossomed for the 10 days we were in the hospital.  Dawson brushed his teeth and climbed in bed.  I sat up awake.  At about 1130 I decided to watch a movie to try to help me go to sleep.  I laughed as I picked up 50 First Dates and popped in the DVD player.  That movie, for whatever reason, made me feel better about everything.  Even though it was fiction (far-fetched fiction at that) it was about a girl with a traumatic brain injury who was living a “normal” life.  The thing that sucked me in was the scar they painted on Drew Barrymore’s head was almost identical to Teagan’s.
  • Day ??? – sometime during chemo:  We started noticing her hair was “thinning out”.  Actually giant clumps of hair were missing in spots all over her head. One day we were doing laundry and Dave told me to come to the dryer.  You could pick handfuls of her hair off the ribs in the dryer and then again out of the lint filter.  That was the moment when I understood why I had Mrs. Simmons for Spanish class in high school.  Her son had passed away from leukemia the year before I was in her class but she still would speak of him often.  One day she told us that the doctors don’t tell you that the hair comes out in clumps.  She would find a clump on his pillow or stuck to his shirt.  She was who I thought of as I was picking my daughter’s hair out of the dryer.
  • Day ??? in May:  We shaved what was left of her hair completely off.  There was no way to make the remaining strands look good even if we cut it short.  So it all came off.  And she was OK with it – the day we did it.  Two days later…. she was completely inconsolable for hours because he hair was gone.  And to this day she throws a GIANT hissy fit if we mention getting her hair cut and she absolutely REFUSES to get anything more than a trim.  Her hair is just past shoulder length right now.

Tomorrow:……. yes I thought of something….. Soul Surfing 🙂

 

Sometimes that moutain you’ve been climbing is just a grain of sand ~ Carrie Underwood

We were done.  We had survived 2 brain surgeries and 14 months of chemotherapy.  18 months of our lives had been dedicated to simply surviving.  And we were done!  YAY!  There was this feeling of relief and elation.  We had conquered the world.  Anything seemed possible from this point.  We had lists of things we wanted to do.  We wanted to plunge head first into anything and everything.

Guess what happened?  Yep that bitch called reality popped back into life.

Reality meant that we didn’t have an unlimited income to travel to all the places we had listed or do most of the things on the TO DO list.  Reality meant that we still had to go every 3 months and have an MRI – which was the giant reminder that this trip to Brain-Tumor-Universe doesn’t every really “end.”  Reality meant that Teagan’s left side was still severely affected from surgery and we still had to see doctors to do therapy and injections and later (although we didn’t know it then) more surgeries.

That brief time of euphoria we had was nice though.  I’ve often wondered what it is like to be a mountain climber (hypothetically of course) — you know once you reach the top what’s left?  Yep, you have to climb back down.  Then once you get to the bottom you have to find a new mountain to climb.

We did have a nice view on the top of the mountain – however brief of time it was.  It wasn’t like we had set a goal and accomplished it, but that’s kind of what it felt like.  The climb down for us wasn’t really an organized step by step coming down so much as it was a clumsy tumble.

I think….. I think we are at the bottom now and are just looking for a new mountain.  All four of us suffered some bumps and bruises on the tumble down.  That’s the weird thing about having someone in your family with cancer — everyone in the family suffers some, not just the one with the illness.  For instance, there’s Dawson.  Who, anytime you bring up writing about his feelings, he ignores you and usually walks out of the room.  He refuses to talk about it to us.  He also suffered the lack of having parents who could help with 3rd and 4th grade homework.  Which actually comes into play in 7th & 8th grade.  I remember him having homework in 3rd and 4th grade, only because I remember once he and I having a giant argument in one of the family rooms at the hospital because he claimed he couldn’t do his homework because he didn’t have a pencil and paper and I made him go to Ms. Molly’s office and get some.  But not having that structure of doing homework every night after you get off the school bus like other kids, actually having to do it at doctors office or hospital or if Mom & Dad remembered — that affects you in later grades.

I’m still optimistic that he will offer up his blog in the next 4 days.  Yeah I wouldn’t count on it either.

The good thing about the tumble down the mountain was that Teagan got to tumble with us.  She had a “good” tumor that was able to be removed and even though the chemo drugs sucked and still have a potential of causing problems for her later on — SHE IS STILL HERE.

Image

(my favorite mountain climber — can you hear the yodeling song in your head?? – BWAHHH HAA HAA)

If you want a happy ending, that depends, of course, on where you stop your story. ~ Orson Welles

I’ve come to one of those points in this story that I don’t like to talk about.  We were two weeks away from the end of chemo.  We had planned a big party to celebrate; my mind was at “the end” again.  I saw the light at the end of the tunnel.  But life throws you curve balls all the time.

I don’t know why I don’t like to talk about this part, really, I just don’t.  Probably because it happened when I was at work.  I have taken an unknown number of 911 calls over the past 15 years.  I have given CPR instructions to people who I know had no chance of saving their loved one, I have listened to people describe horrific car crashes and I have heard things that most people wouldn’t ever want to hear.  These things don’t bother me.  I know there are people reading this thinking that I’m repressing all sorts of things or whatever but I’ve learned over the years how to distance myself from the situation.  That was great, until one day it didn’t work.

It was your average day at 911, car crashes, theft reports and an injured person or two.  Then I got a 911 call from a mother who was sobbing so hard I could barely understand her.  She wanted a police escort to the hospital – a lot of people still think that the police do that.  So I started my usual line of questioning, where are you now, what kind of car do you have, and can you please pull over so I can get an ambulance to assist you instead of the police.  She was reluctant to pull over, or more, her husband who was driving and yelling in the back ground was reluctant to pull over.  Between sobs and trying to get her husband to stop she said they needed to get her 7-year-old daughter to Riley.  So I asked the question, “What is wrong with your daughter?”  It was a basic question – I had asked that same question hundreds of times in the past.  “A few days ago she had an MRI that showed a brain tumor and she passed out.”

I opened my mouth but I couldn’t say anything.  I quickly turned and faced my computer so the other dispatchers couldn’t see me.  More specifically I turned my face, because the tears had already started rolling and I couldn’t stop them.  I had to force myself to speak and I had never had that happened to me before.   I finally managed to convince her to pull over citing all kinds of reasons like the ambulance having oxygen and medical supplies, the dangers of being in the car if she was seizing and the fact that her husband didn’t sound like he was in a state of mind to drive.  The ambulance made it to them, but they were outside of my jurisdiction by then.  I hung up.  I tried to discreetly wipe tears away.  Remember, I don’t cry in public.  And I NEVER cry in dispatch.  I don’t know if anyone knew I had started crying during the call and I’m guessing that if they did they would understand.  But I was determined not to let anyone see.

When you start dispatching they teach you to be empathetic.

em·pa·thy  (noun)

  1. 1.       Identification with and understanding of another’s situation, feelings, and motives. See Synonyms at pity.

I didn’t have to be empathetic with that caller.  I was that caller.  The sobs and desperation in her voice ;that was me.  The sound of sheer panic because she had no idea which way to go or what way her life was turning; that was me.  She was me in September 2007 and those feelings were just as real in 2009 when I took the call.  I remember wanting so badly on the phone to tell her that everything was going to be OK.  But I knew that I couldn’t.  Not just because as a dispatcher you never promise anything you can’t 100% guarantee, but because I also knew that not all brain tumors were as “good” as my daughters.  And I really wanted things to be OK for her.

I don’t know how what happened to the lady and her family.  I hope she is like me and celebrating her daughter being tumor free today, but I don’t know.  Telling this part of the story still brings tears to my eyes.  I’m not sure why.  I think it was just hearing her heartache made me realize that mine ached too even though we were close to the “end.”   It was yet another moment where I thought I had reached the light at the end of the tunnel only to realize that the tunnel just got longer.

I still take 911 calls.  I have since taken others where people have informed me the person they were calling for had a brain tumor.  None of the one’s since that one has been for a 7-year-old.  Or any other age child for that matter.  There is a little girl who lives in the housing addition across the street from me who has a very severe Stage 4 brain tumor.  I don’t know the family personally but we know many of their friends and neighbors.  Part of me feels I should knock on their door and introduce myself.  But the part of me that knows getting to know this family means I have to re-live September 7th, 2007 all over again stops me.  It’s selfish, I know.  I know it would mean a lot to them, because I remember several brain-tumor-universe parents who contacted me and how much I appreciated their support.

So as I’m writing and happily realizing that I’m nearing completion of the 30 days of writing I’m trying to decide if I have learned anything or feel better having shared all of this.  I’m not sure yet.  I’ve got five days to figure it out though.

A Princess Got Chased By A Dragon ~ Teagan

Cheating tonight….  Reprint of Teagans best story EVER (according to her of course).

Written Nov 20, 2008 8:19pm

I wrote a story about a princess who got chased by a dragon. Here it is:

The little princess got chased by a dragon. Then the prince who likes the princess saved the princess from the dragon. And then the king helped the prince to save the princess but they tried there best. And then everyone has came and saved the princess. The prince he got eaten but everyone had to try to get him out of the dragon’s stomach. But they didn’t try to get him out because the dragon was too tuff for them. Then they got him out and they lived happily ever after.

Dawson is funny. Cuz whenever he takes a sip of his Coke Zero he sounds like a pig. I did good at swimming lessons cuz I like my swimming teacher she’s really cool and awesome. I went under water and got some rings and my swimming teacher she was proud of me.

At Remington’s party we had cheese pizza and sausage pizza. I had cheese. And we got tokens to play some games and me and Remington we rode this fake roller coaster and whenever we went up up up we screamed like this “ARRRRRRGGGHHH!”

I love my Thanksgiving! And I can’t wait for it.

Bam gave me kissy’s on my hand and I wiped it on dad.

Can Dawson and I make a web show? (No!) If we had one we could call it “The D and T show.” (Still no).

That’s all mommy (whispers: do you think people will laugh about it?)

Peace out ….gotta b-ounce
Teagan

If I Die Young, Bury Me in Satin, Lay Me Down on a Bed of Roses ~ The Band Perry

When The Band Perry released this song it immediately became Teagan’s favorite.  And she sang it over and over.  She knows every word.  Odd she can memorize song lyrics but not spelling words.  I’m not a fan of this song – probably for obvious reasons.  But the radio (not specifically that song) brings up the story of how you go from having a five-year old who knows she had a “bump” taken out of her head to having a six-year-old who suddenly understands what a brain tumor and cancer really is and that people, even kids, die from these things.

This started with the now famous “bump” in her head — “bump” probably not the best description I ever came up with but it was late at night and I couldn’t think of anything else to describe a tumor.  Even through all the “pokey things” and “finger lights” and “buttons” and medicine that makes your hair fall out we never actually sat her down and said “Teagan you have a brain tumor which is considered cancer and there’s a possibility you can die from this.”  I mean really… what parent would?  Sure older kids have some sort of realization, even Dawson at nine was able to comprehend the severity of the situation but a 5-year-old just didn’t.  This is where the “Good Parenting Book for Kids with Cancer” says you are supposed to be honest with your kids about their diagnosis and prognosis.  I didn’t read that book, along with multiple other “Good Parenting” books.  I should have read the book because, like always, when I don’t do something right the “what you should have done” comes and smacks me in the face.

Actually, it didn’t really smack me as much as it did Dave because this story happened directly to him and only indirectly to me.  He and the kids were in the car and he had the radio on WZPL.  Right after Thanksgiving WZPL hosts a radio-a-thon to raise money for Make A Wish kids.  And if you want to sit and cry for 72 hours straight you really should tune in.  They always have parents of previous Make A Wish kids telling their stories and most of them do not have happy endings.  Dave was really listening intently to the stories and then a man told a story about his son who passed away from a brain tumor.  Later that day Teagan asked  him about the man on the radio.  If I remember right it went something like this:

“Daddy you know that guy on the radio today who said his son died?”

“Yes.”

“His son had a brain tumor?” (it was about half question/half statement)

“Yes he did.”

“His son died.” (again about half question/half statement)

“Yes he did.”

“But I had a brain tumor…”

The realization had hit her.  Suddenly not all kids who had “bumps” lived.  Up to that point she didn’t know any different.  The only other girl she knew with a brain tumor was also alive and like her going through treatment.  And the teen age girl who had passed away from her brain tumor while we were in treatment – she didn’t ever see or talk to.  That’s a lot to process at age 6.  And I’m sure as parents we didn’t handle it right.  We never really gave her any percentages or statistics, and quite frankly no doctors had ever really given us those numbers either.  We just told her that she was way ahead of the curve because her tumor was able to be removed and that the medicine that made her hair fall out was helping make sure it didn’t come back.  We told her some kids couldn’t have their tumors removed and those tumors wouldn’t go away even with the medicine and that was probably what happened to the boy on the radio.

She accepted the answers we gave her.  And she went on about life like she always had.  Every so often, usually when she was tired, she might bring up the subject of death.  So I know it’s there buried in the back of her head.  That’s where my thoughts on the subject are too.  Recently several family members have been diagnosed with cancer and when the subject comes up you can see the thoughts and realizations for her come to the surface.  And she was very upset by her great grandmother’s passing from cancer this past winter.  She handles things pretty well though for a 10-year-old.

So why does she love the song?  I have no idea…… the whole theme is about a girl – probably a teenager – who dies.  I mean it’s a catchy tune and sometimes with catchy tunes you don’t always “hear” the lyrics.  But I think she knows what they mean.  Maybe it’s just her way of letting out some of those bad thoughts buried in the back of her mind.

Maybe I should start singing the song too.