Monday, September 5, 2016

Back to school....or not.

All of our friends and their littles are prepping for the first day of school tomorrow.  Tomorrow school be our son's first day of school too. He's 4 1/2 years old and his first day of junior kindergarten is tomorrow. Instead of going to school, we are going to the hospital to get chemo. As I sit here preparing my home school activities and make my plans, I am reminded of how different my life has become.

Three months ago I was working full time, teaching and working as an educational assistant and planning to have a great summer off with my son. It was to be the last summer off before kindergarten and before I go back to work again. We had plans to go to museums and have play dates with friends. I had already purchased my son's personalized lunch box for school and was getting ready to order labels for his things. As an educator and the mom of a brilliant little boy, I have been looking forward to him starting school for a long time. I was so excited to how he'll flourish within the walls of the school and to see how he'd grow and succeed.

Now, I am planning a home school curriculum with as many games and fun activities as I can, while I try to make up for the fact that my 4 1/2 year old won't get to go to school this year. That his cute personalized lunch box is now the home of many of his robot toys. That I don't have to order the adorable name labels I had picked out. I am trying to make up for the fact that he won't get to meet his teachers and meet new friends. That I am going to be mom, teacher and playmate.

I now have to explain to my son every time we drive by his "new school" that he won't get to go this year. That because of his special medicine and his cancer, he has to stay home because it's not safe to go to school.

While I'm so very happy for all of my friends and their littles who are beginning their school journeys or who are  heading back to school, I am heartbroken for my son. I wish things were different for him. My heart just aches for all of the experiences he will miss his year and the friendships he won't get to create.

Saturday, August 13, 2016

A Mother's Mind

When your child has a cold, you give them cold medicine. A headache gets Advil. A fever gets Tylenol. A scrape gets a band-aid and a kiss. A bad dream gets a cuddle in bed. You do anything you can to make the aches and pain go away. You keep as positive as you can for your child so they aren't scared but your mind tends to wander. Mine does.

Cancer is a different kind of story. I can't put a band-aid on, kiss it better and make the monster go away. I can sit and hold my son's hand as he gets chemo therapy. I can give him a kiss as he drifts off into a medicated sleep for radiation. But I can't take it away. And as positive as I stay for him, I can't stay out of my own mind.

My mind has been my enemy since we found out our son had cancer. It wanders, it assumes, it expects the worst. It creates scenarios that (I hope) I never have to experience.

Over the last two months, my mind has shown me nightmares. Like I've said before, sleep isn't a common occurrence in my world these days. For a long time, at the beginning of all of this, I would close my eyes at night and see a casket. Every night there was a casket. And in that casket was my baby's beautiful, lifeless body. I would picture myself standing next to it, dressed head to toe in black. I would feel myself in sobs, tears forming in my eyes while I tried to fall asleep. Other nights we would be laying in his bed at home, watching him take his last breath. I've seen myself laying on his bed, holding his blanket and favorite bear, going days without eating or moving because my heart has a hole in it. Or laying at his grave site, telling him stories about the things he's missed. I could feel the emptiness so much that the dream felt real. I closed my eyes and watched my son die more times than I can count. I would lay awake in bed for hours at a time, scared to close my eyes and scared to fall asleep.

The mind is an interesting thing. For me, as a mother, I want nothing more than for my child to be happy, healthy and alive. I want to take away his hurt and his sickness and let him be a regular, four year old little boy. I want to do everything I can to keep him safe. My mind wanders. It creates terrible, scary and horrifying thoughts. I can push them out now, write them down for everyone to see and be ok. And when I can't, I watch my son and I get a glimpse of his mind instead.

A child's mind. It is beautiful, playful, innocent. Powerful and contagious. It is in my son's mind that I can find comfort and happiness. His mind doesn't see him being sick and in pain. It doesn't see the stress he is going through every day. His mind sees playfulness and joy. He wakes up everyday and wants to play. He can spend an entire day playing with his Transformers, playing the smelly foot game and giggling with us. He can walk in to the hospital playroom or to the "skating rink" and be ready to play. He can talk about going home his numbers go up and do it all with a smile. He lives each day for the moment, that precious moment where he learns to transform a certain bot or takes an extra few steps down the hall. He lives for his trips to the toy store and eating gummies. He doesn't look ahead with distain or fear. He looks ahead with wonder and curiosity.

My son's mind. It's innocent. It's powerful. It's contagious. His positivity and optimism are incomparable. His strength and stoicism are magical. His mind is the reason my mind has allowed me to see past the dark. To see past the terrifying. To see past the hurt and the scared. His mind lets me see the light, the happy and the proud. His mind lets me feel hope.

Wednesday, August 10, 2016

Our New Normal

It's been a really long time since I've posted. And since I've been completely unable to sleep and have felt the urge to write about why. Sleep hasn't been something that comes easy over the last couple of months but tonight is one of the worst for some reason.

I have a beautiful family. I'm not just saying that. I have a husband who treats me like the most important woman in the world. He's loving, caring, compassionate, funny, handsome and kind. He listens to me and puts up with my silliness. He's strong and is my rock when I need him to be. And he's someone I am proud of and proud to be with. I have a son. I have the most incredible son. For 4 years old, he's brilliant. He's sweet, funny, beautiful with his blond hair and blue eyes. He's smart, compassionate and wise beyond his years. He is the epitome of an "old soul" and is my absolute hero. I am, because of these two boys, the luckiest woman in the world. My world with my boys has been nothing short of my version of perfect for as long we've been us. Until now...

Cancer. Just typing the word is hard. It's a scary word. It's sinister and depressing and unforgiving. It's the last word anyone expects to hear. Ever.

Cancer. Your four year old has cancer. These are words my husband and I were told 63 days ago. We brought our son to the hospital with what we thought would be arthritis and we were told he had cancer. A malignant rhabdoid tumor to be exact. This is a very rare, very sinister, very aggressive, very lethal type of childhood cancer. And our baby boy has it. He has a large tumor on his tailbone that spread to two more places in his tiny body. Which puts it at Stage 4 cancer. Our initial meeting with the oncologist was horrifying. She told us this type of cancer is so rare that it only has a 25% survival rate. Because of it's rarity, there isn't enough information out there to come up with a solid treatment plan so she gave us two treatment options and we had to decide between them. We are not doctors. We're trying to come to terms with the fact that our baby has cancer. How do you even begin to do that? And now we're being asked to choose a treatment plan. I asked what would happen without it. At that moment, the idea of putting my baby through any more pain was just too much to bear. So I asked. And was told that without treatment, my son wouldn't live more than a few months. With treatment, at that time, we have maybe a few years. Neither answer was what I wanted but we chose what we hoped was the more aggressive option.

Over the last 63 days I have watched my son. I watched  him stop walking. I watched him stop being able to control his own bladder and bowels. I have watched him stop playing, talking and eating. I have sat next to him in countless hospital rooms, wishing I could take his place and take his pain away. I have prayed to whoever is listening to me to trade places and to help him find the strength to get through this. And to give me the strength to be the mom he needs me to be. I have cried myself to sleep night after night, have had to walk out of the room so he can't see me upset. I have had to give him medicine that no four year should have to take, let alone know how to pronounce. I have watched my husband, my strong and amazing husband, give our son countless catheters to help him empty his bladder when he couldn't. I have watched my son be put to sleep for surgery, MRI, CT scans and radiation. I have watched my son be fed through an NG tube. I have watched my son, my beautiful four year old boy, never stop fighting his fight. And I have watched my family grow stronger and closer than we could have ever imagined in the darkness days we could have ever imagined.

Over the last 63 days I have watched my son endure extensive chemotherapy and 25 radiation treatments. Twenty five treatments on his tiny little body. And I have watched him do it all with a smile on his face and a positive attitude. He has more strength at his age than anyone I have ever met. He has gone through these days, having endless tests, bloodwork, doctor visits, catheters, and medications without asking why. "Why did this happen to me, why do I have to do this?" Instead, he says ok. "Ok Mom, let's go to radiation." Yes he has cried, but only when the nurses take the tape off of his port-a-cath and when his tube bothers his nose. He has cried because his back has hurt him where the tumor is or when his feet hurt because of the chemo. But it never lasts long and he always finds his happy.

Though we don't know what is happening on the inside and won't for a few more weeks, we are watching our son exceed expectations with his treatment and are watching new milestones every day. Just last week he started walking again and this week, without holding our hands. He has regained all bladder/bowel function and we are happily changing numerous daily diapers again. We are watching him be more playful, happier, more alert and a bit friendlier to the medical staff (but who can fault a kid for being mad about getting pokes!). We are watching him grow and blossom into an incredibly strong little boy.

Cancer. No one ever expects to hear the word. No one expects a doctor to tell them she thinks it may take their son's life. It is the most terrifying and traumatic experience in any parent (or person's) life. It brings out the worst feelings, a certain darkness that can't really be explained. But in that darkness, my family has found hope. We have found strength and support. We have found love and friendship. We have found ourselves and each other. And we have found a little boy who will hopefully continue to exceed expectations and continue to fight his incredible fight with the same grace, strength and stoicism he has had thus far.


Monday, April 18, 2016

A message to my bully.

A message to my bully.

We were friends. Good friends. And then we weren't...

For the last number of years I have done wrong to myself by letting you bully me. I let you turn my life upside down. I let you make me feel poorly about myself. I used to say I moved here to learn that I was mean and shouldn't have friends. I let you make me feel like that. But now, years later, I have a message for you.

I'm sorry.

I'm sorry for making you feel I was worthy of being bullied. That I wasn't someone you could continue to call a friend. To make you decide you could leave me in a lurch and proceed to treat me like I was someone who was nothing to you. I'm sorry that I made you feel your next actions were ok.

 I forgive you.

I forgive you for treating me badly. For bullying me in front of coworkers. For talking down to me in front of clients. For belittling me, harassing me and outright ignoring me in staff meetings. For publicly speaking badly about me at mess dinners. For making sure I know you're talking about me at the ball. For making me feel like I was alone. For seeking out my friends at parties and pubs and confronting them for being my friend. For assuming (and telling them) that they must not like you because they are friends with me.

And finally, thank you.

Thank you for taking yourself out of my circle of friends. And for showing me who my true friends are. Without your decisions, I may not have been able to take the negative people out of my life and surround myself with positive and true friends.

The Girl Who Won't Let You Win

Baby Blog #3- A Whole New World

Baby Blog #3- A Whole New World- 03/23/2012

"Having a baby is like falling in love all over again- both with your husband and with your child." A friend of mine wrote this after the birth of her first child and I thought it was one of the most beautiful things I'd read. And now I know what she meant.

I went to the hospital on February 16th and was a jumble of nerves. I was having a planned c-section so I was nervous about the surgery. I was scared that I might have done something wrong while I was pregnant and the baby wouldn't be healthy. And I was just wondering the entire time about all the of things that were about to change in my life. I tried to keep how I was feeling under control because I knew my husband was just as worried and scared as I was and I wanted to be strong for him. When the nurses brought me into the operating room, away from my husband for a few minutes, the emotions really started to show. I just couldn't believe that the moment we'd waited 38 1/2 weeks for was finally here.

I've had a few surgeries in the past but was always asleep for them so the whole idea of a c-section was a little odd to me. I was so scared I was going to feel pain and discomfort. All I felt was this wonderful sensation of being warm. I was laying on the operating table with a big curtain in front of my face, my arms out to the side, looking up at the big lights and the hospital-white walls and wondering if the baby was a boy or a girl, what he or she would look like and really how the whole process worked. And when my husband came into the room and sat next to my head I was thinking about how weird it was that I was already cut open and they were letting him walk around. I'm so glad he was able to be there for the delivery though- I don't think I would have been able to do it without him.

As weird as it was to be awake during surgery, it was amazing to be able to talk to my husband and to know what he was thinking and how he was feeling throughout. He has always been my biggest comfort, so having him there made me a lot less nervous. I ended up just being really excited about it all, more for him than me even. I was lying on the table with the doctors working away on the other side of the curtain and we were talking about all of our thoughts and our excitement about becoming parents and a nurse poked her head over the curtain. She asked if we wanted to see the baby first before knowing the sex or if we wanted the doctor to tell us. We didn't realize we had a choice but decided the doctor could tell us and within 30 seconds, we had the announcement.

Tears started to flow from us both and then we heard the cry- the most amazing sound I have ever heard! A nurse brought the baby around so we could see and I had this overwhelming wave of feelings and emotions come over me-  I was looking at the most beautiful person I had ever seen. And couldn't believe that this little person was a part of me and my husband. I had no idea that it was possible to feel that much love for someone in such a short amount of time, without having any physical contact. I looked at my husband and watched him as he got to touch his baby for the first time. I saw this tiny little hand reach up and grab on to his finger and saw a look of awe on my husband's face. Again, the wave of emotions came over me and I found out what it was like to fall in love with my husband again but to love him in a different way. For five years I have loved him as my boyfriend, my fiance, my husband and really my best friend. But now when I look at him I see all of that, love all of that, but I also love him as the father of my child and the man who has made my life whole.

We brought our baby home on February 18th and it has been fun, stressful, exhausting and wonderful all at the same time. We have finally gotten a routine in place and have been able to enjoy seeing as our baby grows and discovers the things around us. Our lives have been forever changed but in the best way they could be.

Sharing a Moment

Sharing a Moment- February 10, 2012

So as you all know, my husband and I are expecting our first child, literally any day now. The last 38 weeks have been such a whirlwind between work and school. Honestly, it's amazing how fast time goes when you've got something exciting going on, but slow in a way too. I don't really know how to describe it. Anyway, we decided in January that we wanted to do a professional maternity photo session so we could have something to us remember this time. I did the typical photo of myself in the mirror that every expectant mother does but I really wanted some nice photos with my husband too (any of you who know what military life is like know why that is so important).

Before I share some of the pictures, let me explain something. I really don't like getting my picture taken. Actually, I completely hate it. It's one of the most uncomfortable feelings in the world to me. My mom tries to take my picture when she visits and she always ends up with either a picture of me running away, hiding behind someone or something or one with my hand in front of my face. So the fact that I have now done three professional sessions with my husband (our wedding, our pre--deployment and now maternity) is a really big deal. And I have to say, I feel bad for the poor photographers that get stuck with me. I'm pretty sure I'm the most awkward person out there. I giggle. The entire time. Maybe because I'm embarrassed or nervous but I literally giggle in every picture. I never know what to do with my eyes, my arms, whether or not I should smile. The entire time I'm getting these photos taken I'm thinking "Wow, there isn't going to be a decent picture here and I'm wasting this poor girl's time." But I stay, keep having these wonderful people take my picture (feeling bad for ruining each one) and then go home embarrassed and sad that none of them are going to turn out.Then comes the waiting. I sit and wait for that one sneak peek, hoping that in all of the pictures taken that there is one, just one that isn't completely horrible and that I won't be humiliated to show off. And then, after a few days, that one picture shows up. And it's great! I get so excited, so happy that just one turns out ok and then I don't care about the rest.

This maternity shoot was no different then any other time I get my picture taken. I was awkward, nervous, felt like I was messing up the pictures. And at 35 weeks pregnant, I was feeling all of the things any other pregnant woman feels by that point- fat, uncomfortable, unattractive, and really insecure. And I felt like all of that would show in the pictures too. I felt so bad afterward because I really enjoy our photographer and I really felt like I was wasting her Sunday afternoon.

I got the photos in the mail this week and remembered why I like this photographer so much. She's amazing! She has such an awesome way of making people look good in their photos, no matter how bad they may be feeling about themselves. She has, once again, given us something beautiful to look back at and to really help us preserve memories. So, here are a few of the photos :)