All You Need To Be Aware Of… Is How Awesome We Are

Nearly four years ago my son was diagnosed with leukemia. He was a sweet, beautiful six year old boy with his future ahead of him. He has brought us great joy over the years. His beauty has been beyond measure. However, he has also brought us great sorrow. A pain, a heartache most parents cannot imagine. As much as it hurts me to say this, had there been a test available, a prenatal test, to check for the leukemia gene, I would have had it performed. And I would have aborted him. Because who wants to set themselves up for parenting someone who will bring so much pain?

Are you disgusted? Mortified? Ready to throttle me? Good. I hope so.

Because it’s not true.

I wouldn’t have had the test, even if it was available.

I wouldn’t have aborted him, even if I’d known he was going to have leukemia.

Even if I’d known he’d be dyslexic.

And also even if I’d known he’d be on the autism spectrum.
I hope I’ve made a point.
It’s April. Until this year I didn’t know that April was “Autism Awareness Month”. I’d never heard of “Lighting it up blue” or whatever the heck that phrase going around the interwebs happens to be. But for some reason, this year, I’m seeing it everywhere. My Facebook friends are supporting and talking about Autism Speaks. And every time I read about that organization, I feel really sad. There are a lot of reasons why I don’t support Autism Speaks but the number one reason is because, according to them, I, and a lot of people I know and love, would have been better off not being born.

“But, Mandy, what about those Autistic children much further along the spectrum than you and your son? The ones who are severely affected, nonverbal, violent?”

To you I say, what about them?

First of all, let’s just say that a “severely” Autistic person would be better off not being born. How do we know that, during a prenatal test, we’d be able to tell the difference between a marker for severe autism and mild autism? What then? Kill them all?

Secondly, I believe that, no matter how devastating a situation or condition a child might be born into, that child serves a purpose and is a blessing. We might not be able to see what that purpose is, but that doesn’t make the purpose any less real.

I am horrified to read that many mothers are aborting their babies now that they can test for Down Syndrome in the womb. My children recently befriended a lovely girl with Down Syndrome. She blessed me. She blessed my children. And I know she’s a blessing to her parents. I am so glad she is a part of this world. That no one had a chance to prevent her from becoming a part of it. So thankful.

Over the past couple of years I’ve gotten to personally know a number of adults and children on the Autism Spectrum and I would be remiss if I didn’t point out that they are some of my very favorite people. Sure, their lives have been filled with challenges and their parents are often pushed to their limits, I’m certain. But guess what? Most parents are. I have a child who has had cancer, who struggles with learning difficulties, emotional troubles, and is thought by some professionals to be on the spectrum as well. He is my heart. He is the child to whom I can most relate. And he inspires me and many others every day that he is alive. I love him just the way he is, and I wouldn’t change anything about him, even if I could.

Successful Motherhood in Ten Points (From a Two-Time Promotion Earner)

As of March 11, 2014, I have been a mother for a full decade.

“Mom” is the only job I’ve ever had at which I have felt successful. Unless you count being a student because I don’t count it. Now that I’ve been at this job for ten years, I figured I might as well offer up ten bullet points of interest on what I think makes me a successful parent. I am by no means an expert but I am a happy parent living with three amazing children. I must be doing something right.

The day that I became a mother, ten years ago.

The day that I became a mother, ten years ago.

1. I am a rock star super human being.
I have given birth, non-medicated, at home. Twice. Until home birthing, the most challenging physical feat I’d ever tackled involved surviving the mosh pit at one Lollapalooza or another. But five years ago, after giving birth in my bathtub, I decided that I am way stronger than I ever dreamed possible. And it was that home birth which inspired me to start running a few years ago. And now I work out nearly every day. I don’t do amazing things like push ups or chin ups or burpees. But I exercise. And I can run. And walk a mile with ankle weights and hand weights. I mean, I have endurance and strength that I never had as a child or as a teen. I am strong. I am powerful. I am wonder woman. And I’ll never tell myself that I cannot do something ever again like I did before I pulled those home birth stunts. It is my hopes that my children will see me challenging myself and never giving up… and that they will do that themselves.

2. I Treat Myself and Celebrate my Victories.
When I do something of which I am proud, I let people know about it. I talk about how proud I am of the workouts I accomplish. I tell people that I wrote a play and maybe I’m a little braggy about it. I lose 12 pounds, totally change my diet, and start working out regularly… you’re  gonna hear about it (because I totally did). It is my opinion that our kids need to hear the positive inner dialogue we have running inside of our heads. I want my kids to hear the kind things I have to say about their mom. I grew up with a mother who never talked herself up at all. And I grew up never feeling very good about my mom or myself as a direct result. How can I expect my kids to have positive self-talk if they don’t know what that sounds like?

3. I cannot be selfish about important things and still be a good mom.
It’s okay for us moms to be selfish once in a while. It really is. You are tired and you have had a long day? Order that pizza, sister. You have your eyes on a new pair of Converse and you have a little birthday money set aside for them? Get yo Chucks on. The kids want to watch ahead of you in “30 Rock” while you are in the room? Send those brats packing if they can’t wait to Liz Lemon it up when you are free to do so with them. But ladies, once you have children, there is no excusing excessively selfish behavior. Smoking? Drinking regularly? Eating crap? Being lazy? Being abusive? Being useless? None of these things are ever acceptable but once you have been given the incredibly important assignment of raising kids, you need to step.it.up. If you are ashamed of who you are, chances are, so are your children. And they will be spending a lot of hours complaining about you in counseling years from now. As my pal Liz Lemon says, “Shut it down.” Shut down this nonsensical operation and get to turning yourself into the amazing mother you can and should be.  Yes, I just mentioned Liz Lemon twice in this point.  Because I’m awesome.

4. I cannot have it all at once and still be a successful mother.
For a while after my mother died, I spent a lot of time thinking that being a mom wasn’t enough. While breastfeeding and diaper changing are extremely important duties, the days can become dark when those duties are all one does for days, weeks, months, years on end. When my daughter was about 18 months old, I went a little crazy and decided to start an alternative to a mom’s group that I had been a part of. With a slight nudge from my husband, we’d turned what was supposed to be moms getting together to make art into a full-fledged non-profit arts organization. This was at a time before I’d learned to say no to him. Needless to say, that fell completely apart, nearly destroyed me, and was a total disaster. However, it did teach me one important thing: I will have to wait a while before I can have it all unless I want to be a totally crappy mom. So, now that my kids are all walking, talking, feeding themselves, and wiping their own bottoms (most of the time, ha) I am able to focus a few hours a week on things like exercising or needle felting or writing these extremely important blog articles for you to read. But it took about ten years of being a mother, and two promotions, for me to “earn” this free time. And man alive, have I earned it. So when I do spend some time working on things that are important to me, I don’t feel bad about it. Because I’ve put in the time. The vacation days have been stock piling. I’m going to start taking a few “personal” days here and there.
5. I will screw up. A lot.
I have made mistakes. I have spanked one of my children once. I have threatened a spank. Threatened grounding. Gotten super mad because a child wouldn’t let me try to pop a white head on her face. I have made idiotic moves in my marriage. I have carried resentments. I have refused to forgive. I’ve been anything but Christ-like at times. But you know what? None of us are perfect. And the fact that I can admit my faults and try to do better, means I’m doing alright I guess.
6. I must be willing to bend my own rules and make exceptions.
My husband and I don’t have a lot of rules in our home. We are pretty liberal, open-minded parents. We let our kids watch tv shows that, “No one should be watching” (yes, I heard that from a friend’s child about a specific show recently). But we are pretty strict when it comes to certain food matters. We are particularly strict about food additives such as dyes, preservatives, etc. However, occasionally, we bend or entirely break that rule because we place an emphasis on fun and experience in our family. Having a bag of Skittles in the afternoon at home isn’t exactly a special experience, in my book. Attending a circus for the first time and enjoying some of the cotton candy is though. Buying some cheaply decorated cake with artificial color for a birthday isn’t a unique or remarkable opportunity. Visiting Honeydukes at the Wizarding World of Harry Potter and buying your very own container of Bertie Bott’s Every Flavour Beans is totally a once-in-a-lifetime opportunity and will produce a great deal of fun memories. See the difference? So, while we have a rule about food, we also break that rule when the experience it could offer far outweighs any potential harm it might do to our children. I hope they will carry this mindset with them into adulthood.
7. It’s less about being perfect and more about how I respond to the mistakes I make.
I have to apologize to my kids at least once a week. Maybe I should do it more often? I have a hard time telling when I’ve said or done the wrong thing. But there are times when I’ll get this gnawing feeling in my stomach that tells me I’ve been a real pain in the rear. I guess that’s called guilt. So I will acknowledge that what I did or said was wrong and ask for forgiveness. From my children. For some reason, so many parents don’t see it as necessary or even appropriate to tell your kids that you are sorry. To me, it’s essential. Without my ability to apologize, I’d be less of a mother. Without it, my kids and I would have a relationship driven by fear rather than one based upon love and mutual respect.

8. Be funny.
Today my daughter was trying to watch something on her tablet (with headphones) and the other, MALE, people in the room were being noisy. She said, “Hey guys, I’m trying to watch something. Could you be a little quieter? Well, not you, Mom. You aren’t making noise. I said, “I could start.” I began slamming my fist into the table, making whooping noises. A reference to the time that Kramer was trying to get Joe DiMaggio’s attention at Monk’s. She giggled, then guffawed. “Mom, you so funny” she said in her laughter. Maybe it’s true that I am funnier than most folks. But I believe that’s not because I have a natural talent for comedy (Oh how I wish that I did… maybe I do? Maybe?) and it’s more about the fact that I have very little filter. Nothing embarrasses me (nothing except when mean people call me out on my lack of social skills over the phone, at church… yes this stuff happens to me). My kids tell me that I’m the funniest person they know. I’m told DAILY that I’m soooooo funny. I keep them laughing. They keep me laughing. And when you are laughing, there’s not a lot of room left for arguing or crying or rude words. So I’ll keep being the big clown who acts out inappropriately and who isn’t afraid of a little, or a lot, of bathroom humor. Because it’s fun. And who doesn’t want a fun mom?

9. Share your experiences.
For my 36th birthday, I treated myself to two second row tickets to a Cyndi Lauper concert. And I took my 7 year old daughter as a date. I don’t think she enjoyed herself, to be honest. She was fighting an infection at the time. But I don’t regret taking her for a second. One day she’ll be able to say that her first concert experience was with her mom and she’ll remember the songs (she really will, she has them all memorized) and she’ll remember the drunk lady beside her. She’ll remember sharing that with me. How happy I was. How special it felt.
Recently my son became obsessed with this graphic novel series, “Amulet”. He talked about them and talked about them. Finally he asked me and his sister to read them. His sister started them. Now I’ve started them. It makes him so happy to share this passion with us. I am happy to oblige by taking the time to read them.
A few weeks ago we took a trip to Orlando, Florida. Our family had an opportunity to visit Universal Studios. We were especially excited about the Simpsons area of the park. Enjoying lunch while sitting in front of a Jedediah Springfield statue while singing along to “Do the Bartman” with my fellow Simpsons fan kiddos was something I will remember for the rest of my life, fondly. It was a precious moment to just stop, take it in, capture a mental photograph, and think to myself how wonderful it was to be sharing such a magical moment with them.

10. Scary stuff will happen. Try to keep it together. And use it.
All of my kids have had surgery. One of my kids has had cancer. My marriage has nearly ended. I’ve battled postpartum “crazy as all heck”. The past few years have not been a picnic in the park. But I’ve learned that I’m stronger, not only physically, but emotionally too. I can make a comeback. I have endured so much heartache that at times I thought I would literally die from the pain. However, I have managed to recover from the heartache and use it. I’ve used it to fuel writing. I wrote an entire one act play about my family’s experience with cancer. Most importantly, I’ve used these experiences to change my perspective. I can see so much more clearly now. Colors are brighter. I appreciate life so much more. I don’t take for granted that I’ll always be here. So I work. Hard. As if today was going to be my last day on this planet. I am so thankful to have my entire family, well, and under one roof. If we’d not been through so much, I’d not be able to appreciate it the way that I do. For this ability, I am thankful.

It is my wish that you can learn from my experiences as a parent. Maybe you can take something away from this article. Something that will be game-changing. However, I realize that most of us have to learn for ourselves. And that until you wake up one day and realize that you’ve been doing this parenting thing for ten years and perhaps you should reflect upon this milestone in a sentimental manner, you probably won’t even realize that you are already your own parenting expert.

Three years later…

It’s been three years now since my oldest son, Hunter, had his life-saving bone marrow transplant which seems to have cured him from leukemia.  Three years.  It seems like a life time ago in all honesty.  I’m not sure why I feel the need to keep writing about it.  But I do.  I can’t help it.  Maybe because I figure someone might stumble upon my blog and need reassurance that three years later, the bone marrow transplant is a distant memory.

Most of the time, it is.

We recently attended a retreat for families of children who have or have had leukemia.  The illness was such a thing of the past that it didn’t even seem to pertain to us.  Leukemia is no longer what we think about day in and day out.  Now, instead, we are dealing with the aftermath.

The learning differences.

The anxiety.

The depression.

The fear.

The emotional breakdowns (both his and mine).

The memories that will literally pop up out of no where and take my breath away.

The unknown.

There is still so much we don’t know about Hunter’s condition.  We don’t know if he’s sterile yet.  We don’t know if he’ll end up with secondary conditions as a result of his treatments.  We don’t know how his academic performance will be made more and more difficult as his school work becomes more challenging.  And we just learned at his three year check up that we don’t even know if his heart is functioning appropriately.

What I do know is that three years later, in many ways, I’m less hopeful.  Less grateful.  Less optimistic.  I know how this sounds.  I sound like one of those people you would like to throttle.  I didn’t lose my son to cancer.  I didn’t suffer the unthinkable.  He’s here.  He’s relatively healthy.  He’s doing okay.

But after three years of watching him fight, suffer, try multiple medications,

lose friends, be bullied, be ignored, cry, break down, go from counselor to counselor, and in general live a miserable existence, I’ve grown a bit jaded.

Fighting the good fight.  Two peas in a pod.

Fighting the good fight. Two peas in a pod.

So, I’m here to tell you that three years later, it still hurts.  I’m still scared as hell.  I’m exhausted. And I’m starting to think that there is no hope.  I wish that wasn’t the case but it’s the truth.  It’s my truth.  And, well, I hate putting such negativity out there but dammit, I’m tired.  I’m sad. And I’m not sure if there is any chance that I won’t be tired and sad ever again.  At least when it comes to my son.

It just sucks.

Can’t imagine what it’s like for him.

Camp Charley at the Center for Courageous Kids

This weekend our family had the incredible opportunity to attend a wonderful camp for children who have had certain types of illnesses (leukemia being one of them) and their families.  The Center for Courageous Kids is in Scottsville, Kentucky and they host week long camps and weekend long retreats all year round.  The kids definitely want to go back again, both with their entire family but also for the week long oncology camp.  Siblings can attend that camp and both Hunter and Ronin are open to that possibility.

The location isn’t very far from our home.  The facility was beautiful and everything was neat and tidy.  Our only complaint was that we didn’t bring any of our board games so we’ll know to do that next time!

This weekend was jam packed with loads of fun activities, most of which my kids either had never experienced or had only experienced on a limited basis.

There was:

Trick or Treating,

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Fishing,

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Woodworking,

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Horseback Riding,

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Paddleboating, Archery,

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A bowling alley/game room, roasting s’mores, an open gym, and a great dining hall.

ImageThe staff accommodated for Hunter’s special dietary and sensory needs beautifully.   I also appreciated the medical presence on site as well as the fact that there is a small hospital less than five minutes from the camp’s property.  While this isn’t so important for us now, it made me smile to think that a child, no matter where he or she is on this medical journey could come and safely participate in camp activities and just be normal for a while.  While we were in the dining hall, Hunter got into the habit of putting on noise cancelling headphones in order to help block out the music and sounds from the crowd.  Now I know that we must own a pair for home.  I can’t wait to buy some tomorrow!

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Traditionally, each camp group signs a “Cubby” poster that is displayed in the dining hall throughout the year.

Our “Cubby” was a Halloween-themed Jack-o-lantern.

ImageAlso, we were assigned a wonderful volunteer to help us navigate camp all weekend.  We enjoyed getting to know Lauren.  Her favorite tv show is “Gilmore Girls”… we had plenty to talk about and the kids really had fun hanging out with her.

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Happy Halloween and Happy Fall!

Thank you, Center for Courageous Kids, for creating a full-filled weekend that our family will never forget.

See you next year!

Hunter’s Ways to Live Forever

July 30th will mark the third anniversary of my oldest son’s leukemia diagnosis.  Three years since my entire world was flipped upside down.  Three years since I thought my heart would literally break from the pain and that I would never be able to shower enough to wash the stench of fear off myself.  Three years.

Three years ago, a six year old Hunter had just started chemo and his new life living as a cancer patient in the hospital.

Three years ago, a six year old Hunter had just started chemo and his new life living as a cancer patient in the hospital.

Hunter is no longer taking any cancer-related meds.  He’s graduated from occupational therapy.  He’s playing catch up academically with his tutor and doing rather well most of the time.  He’s making progress in physical therapy and hasn’t walked with a limp nor a cane in weeks.  He appears to be pain free.  He doesn’t have to return to the cancer clinic again until November when he has to undergo his thorough 3-years-past-transplant tests.  They will last all day.

From the surface it might look like the cancer part of our lives is over.  At least for now.

But there is so much beneath the surface.  Lurking.

My youngest child Drayken, who, in theory, was too little to take in too much of what happened to his Bubbie, asked us if we were going to take Hunter to check up on his “blood cancer” on the way to Hunter’s last clinic visit.  None of us have ever referred to leukemia as a blood cancer, which it is, around here.  Somewhere, somehow, over the past three years he’s taken that in.  What else did he take in?

My daughter, Ronin, has fears that limit her.  Limit her from feeling comfortable with walking down the hall in the dark.  Limit her from looking in all of the closets when we can’t find her older brother.  Fears that leave her trembling and hysterical when we still cannot find her brother and end up calling 911.  Because she didn’t look in the closets and was too scared to tell me that she didn’t look because she was scared of zombies.  Her fears paralyze her.

And then, of course, there is Hunter who appears to be struggling on so many levels that I don’t even bother to try and list them all.  But they are there and they are being dealt with as best they can be dealt with.  And they lead me to believe he’s taken off in the night.  And they lead me to feel scared and on edge most of the time.

When things get hard, I find it affirming to focus on my goals.  To focus on the things that I want to do in this life before it’s over. 

Recently we had a chance to preview a new film that is set to release in theater this Friday, July 19th.  “Ways to Live Forever” is a story about life and a boy’s attempt to live as much of it as he can while he still has a chance.  The main character in the film has leukemia so, needleWays-to-Live-Forever-poster

ss to say, many elements in the film hit home, deeply, for us.  So much so that my daughter refused to watch and my son has turned down any request to watch it again (for the sake of capturing a genuine reaction from him for this article).

Sam made a list of things he wanted to do before he died and then set about doing them.  In honor of the film, my children and I have also made a list of the things we’d like to do before we die.  And in many ways we have also already set about doing those things.  Some of the items on our list are goofy.  Some are redundant.  Some will possibly break your heart when you consider the source.  Some were left unsaid for fear they couldn’t possibly come true (for instance, Hunter is no longer focusing on his option to marry and then adopt if his treatment proves to have left him sterile…instead he’s focusing on bachelorhood and cat ownership).

Here are some things we wish to do before we die:

Drayken, age 4:

Play lots of video games

Share with people who don’t have things

Eat a lot of ice cream sundaes

Become a man

Be a husband and daddy

Ronin, age 7:

Go to a Macklemore concert

Travel the world:  Mexico, China, France, New York, Japan, California

Be a wife and a homeschool mom

Work with the FBI for at least a year

Be a lawyer

Go out in the woods and eat wild rabbit

Live to be 100

Never smoke or become a stripper (I think what she means here is to be honorable and decent and moral)

Go to college at age 15 (even taking one college course at this time would count)

Perform in a comedy act

Own a horse

Hunter, age 9:

Go to Mexico, Germany, Japan, France, Italy, and China

Be paid as an actor

Have a cat

Learn Japanese

Earn black belt (or at least a high bel

t) in karate

Mandy, age 35:

Perform in a real improv troupe in front of an audience

Pursue visual arts and create some stuff

Homeschool my kids as long as they want

Finally write that book

Stay married until “death do us part”

What’s on your list?  I’d love to hear how you and your children plan to live forever!  Post links in the comments!

Today they are healthy, happy children but still deeply affected by our cancer journey.

Today they are healthy, happy children but still deeply affected by our cancer journey.

Opening weekend attendance is very important for a successful release when dealing with specialty films such as WAYS TO LIVE FOREVER.  If you live in any of the following cities, please go out and see this beautiful and inspiring film about life.  A certain portion of the total box office proceeds will go out to support various children’s hospitals, cancer-related charities and organizations.  WAYS TO LIVE FOREVER will be showing in both Burbank and Orange, CA, New York, NY, Cherry Hill, NJ, Dallas, TX, Chicago, IL, Norfolk, VA, and Baltimore, MD. 

Check out WAYS star Robbie Kay as he talks about his list of Ways to Live Forever.   

To the cast, crew, producers, writers, and supporters of the film:  Thank you for making this movie a reality.  My prayer is that it educates and inspires a vast number of people to look at life differently and to keep fighting for scientific breakthroughs regarding childhood cancer and finding a cure.  Well done!

The Reminding Comb

theremindingcomb

Ever since my mom died seven years ago (Wow, seriously?  Seven years ago?) and I was never given a chance to go back to the house in which I grew up and say goodbye to the remaining tangible pieces of my past, I have been fiercely protective of what few trinkets and baubles I have left from my time at “home”.  There is a tiny plastic Poochie box floating around here somewhere and I still have a few of the bookmarks that I purchased at some of my first book fairs when I was just learning to read.

If I fear at any point that one of these items is missing or broken, I start to freak out a little.  For it seems that I feel as if the parts of me that are remaining from my childhood will vanish into thin air if these small items are no longer with me.  It’s like maybe they are taking the place of the brothers and sisters that I don’t have.

Another one of these “sibling items” is a plastic green comb.  A wide toothed comb that my parents had in the house before I was even born.  This sucker is an antique.  I’ve used it throughout my entire life.  It has a hole drilled in it so that I was able to hang it on the shelf that my dad made me to hang in the shower of my apartment.  These days it tends to rest in the cups from IKEA hanging next to the shower.  Also in these cups are things like my razor, dental floss, shampoo.  A funky modern twist on your typical shower caddy.
Ever since the moment that my daughter was wheeled away from me in the pre-op room on the day that she donated her bone marrow to save her brother’s life, she’s been dealing with some crippling anxiety.  That day was over 2 years ago now and I’m just realizing that these issues of fear and paranoia are not going away but are instead getting worse.  She can’t seem to enjoy simple things like a walk around the neighborhood without trembling in terror.

I’ve also noticed that she doesn’t like to walk down the hall alone.  Now, please note that we don’t have a large house.  In fact, our house is barely big enough for the five of us.  It’s a ranch style house with a short hallway that ends in a cluster of three small bedrooms.  That’s it.  No dark corners or secret places.  It’s a very small house.  Still, she will literally RUN down the hall in order to get from one room to the other.  She will NOSE dive on the sofa or a bed in order to avoid the zombies she imagines to be under them.  Her thoughts are constantly being invaded by these fears.

Recently we were having one our  “Ten Minute Tidies”:  we all team up and get the house looking decent in a short period of time.  It works beautifully.  A lot of how this process works involves me handing the kids items and having them travel down the short hallway into one of the three bedrooms or two bathrooms to deliver the items to their homes.  During this particular Ten Minute Tidy, I had sent my daughter down the hall to deliver my green comb to my bathroom.  A couple of days later I went to use my comb and one of its teeth were missing.  It was a snaggle-toothed comb.

How did this happen?  How would a comb that was at least 40 years old without a scratch on it suddenly lose a tooth?

I had a feeling my daughter might know something about this.  But when her dad and I asked her, she denied it.  She had no idea what happened to my precious comb.  We reminded her that no one was going to be in trouble… we don’t really do “in trouble”.  We just wanted to know what happened as combs don’t just lose their teeth without just cause.

Finally her brother told me.  The comb had ended up in the toilet the day that I had asked his sister to take it back to the bathroom for me.  And rather than bother to come and tell me and her dad, she took care of it herself.  Hence the missing tooth.

At first I laughed and imagined that this was simply an example of a kid doing their job poorly.  She had delivered the comb but she probably threw it into the bathroom because she was in a hurry and….

Over the next couple of weeks I pondered the comb incident.  I thought about it each time I saw the comb or used the comb.  I imagined what would have been the cause for her to land that comb in the toilet.  What on earth?

The more I saw her running down the hall and leaping onto beds and sofas, the clearer the story became.  She had not thrown my beloved comb out of feeling rushed or for disrespect towards my stuff.  No, she’d thrown it out of anxiety.  And fear.  When I had asked her to deliver the comb, she had been terrified.  She didn’t want to go back to my bathroom.  She didn’t like going back there alone.  And so she had thrown the comb so that she didn’t have to actually enter the bathroom.  She was simply coping.

The comb has more meaning to me now.  Even missing a tooth, it is more valuable to me than it ever was when it was simply a relic from my childhood.  It is now a reminder of what my daughter can and cannot handle.  It’s a reminder to treat her gently because she’s dealing with some really heavy stuff.  It’s a reminder to not send her off down the hallway without a buddy.  And it’s a reminder that she sacrificed her innocence and became old overnight in many ways, so that my oldest child could live.

Of course we are addressing my daughter’s anxiety issues.  We talk a lot.  We have started using essential oils.  And I’m collecting names of counselors for her.  I suppose the most important thing that has changed, however, is that I’m aware now of the depth to which her fear runs and I’m paying attention.  I’m compensating for it and I’m providing her with support.  Certainly I am not offering up any judgment.  I’m letting her be her and I’m loving her where she is at.

Ways to Live Forever: An Upcoming Movie Review

I have officially broken my cardinal rule about watching tv and movies that involve people dying or people having cancer or heaven forbid both.  But boy am I glad that I did.

Recently I was contacted by the World Wide Motion Pictures Corporation.  They had a great movie called “Ways to Live Forever” about a boy with leukemia being released in the near future and they needed our help  spreading the word about the film (seemingly based upon a best selling novel).  Now, considering my very strict rulemaster key poster, I was hesitant.  And then I watched a trailer.  I told them yes.  A resounding yes.  (By the way, this is not the official trailer which is currently being produced.)

The whole family sat down recently and watched the screener of this film.  It was wonderful.  And I cannot wait to tell you all about it, what we thought about it, and how it has inspired us in an upcoming episode of our webseries, “The Real Homeschoolers of the Boro”.

In the meantime, you can start learning more about the movie.  Some of the actors have recorded intro videos… learn more from Robbie Kay, Ella Purnell, and Alex Etel… three amazing child actors!  Expect more YouTube videos from the actors soon! See what others are saying about this amazing, uplifting film about life.  More reactions can be found at this link too.

My favorite thing about the film?  A portion of the proceeds for the film go toward various organizations such as the Leukemia & Lymphoma Society and various children’s hospitals. My own business does this too so this is an act that is near and dear to my heart.

And check out these supporters of the film!

Start connecting with others about “Ways to Live Forever” by tweeting and following #liveforever.

Be sure to “like” the page on Facebook for up-to-date information!

If you are new to my blog, you can learn more about our leukemia journey here.

Connect with us for occasional updates on Hunter’s journey on Facebook!

And if you are a parent dealing with a sick child and you need someone to listen, I’m here.  Feel free to email me at shebrakes4rainbows at gmail.com.

You might also want to check out 33 Creative Ways to Help a Family With a Sick Child.  I have made available a downloadable pdf so that you can share it with family, friends, organizations, etc who might want to help your family.