Life is tough my darling, but so are you

Life is tough my darling, but so are you. Stephanie Bennett-Henry

You never know how tough and strong you can be until you have a sick child. You want to run and hide. You get angry. You scream. You cry. You feel helpless. You feel fear. You don’t understand all the big medical words.

Confusion sets in. You feel small, helpless, weak.

You fall to your knees. You look to the sky. You pray.

You find strength. You find hope. You find understanding. You find peace.

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A Mother’s Day Thank You

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It’s Mother’s Day. The time of year we lift the women who birthed, fed, wiped, burped, trained, hugged, cared, and loved us.

We sing praises to the incredible one who carried us around for nine months dealing with aches, pains, heartburn, swollen ankles, puking and wearing pants with no flipping buttons.

We salute the women who thought they were signing up to “just be” mom, but also got hit with the role of, doctor, play date, chef, housekeeper, referee, therapist, and entertainer. Oh and let’s not forget Taxi, ATM, and project manager. (Who else keeps everyone’s activities organized?)

We recognize the women who taught us right from wrong and don’t touch that – it’s hot! And told us that kindness, love, and respect are important, and we witnessed it in action as we would watch mom show kindness, love, and respect to others.

We apologize for those few years we thought we knew everything and you were so dumb and stupid and when we stopped giving you hugs and kisses goodnight and never wanted to be around because we thought our friends were more important.

We thank you for always having our backs, allowing us to stay out just a little longer than curfew, and cutting the crust off the bread. Thank you for making sure we had clean underwear, clean sheets, and clean dishes. For not beating us to death when we would get sassy and talk back or “forget” to take out the trash even after you mentioned it a million times.

We are in awe by the incredible force you are. You had loved us before you knew us. You prayed continually and fearlessly for our safety, health, minds, actions and future. You found blessing in our successes and experience sadness in our failures. You were always there.

Please don’t ever think your hard work and dedication was in vain. You are the backbone of ours lives; shaping us into part of the person we are today.

Mom’s are rock stars!

To all the mom’s biological, step, adopted – Happy Mother’s Day!

Goodbye Cancer. Hello Anxiety.

anxietygirl

It has been a long time since I have wrote about cancer. It has been nine months since Mallorie was done with treatment. With only having a monthly checkup on the calendar, one would think cancer would be pretty much a distant memory. At least that is what I was hoping.

The whole time Mallorie was going through treatment, all I could think about was reaching the end. Once she was done with treatment we could move on with life. I wish someone would have prepared me for what happens after treatment. Which to me, is turning out to be worse than the cancer itself.

Mallorie has been feeling unwell for many months. She has been having a hard time breathing. Most of the breathing episodes happen while at school or at night. And ever since she finished treatment, it is like she can’t sit still or be alone. Mallorie has always hated being by herself. Even as a little kid she was always at someone’s feet. She has been to the doctor many times over the past nine months for respiratory issues. Yet chest x-rays, oxygen monitoring, blood work and heart test all show she is in perfect health. So what the heck was wrong with her.

She kept telling me she was crazy. She would cry all the time for no reason. She worried about things she cannot control, like terrorism. What teenager really is so scared about terrorist they don’t want to go to the movies or church because they are afraid someone is going to blow or shoot the place up? She couldn’t shower alone most of the time. Then she had two fainting spells.

I finally took her to the ER this week because she briefly passed out. I wasn’t leaving the hospital until I had a solid answer to what was happening. I started thinking maybe it was due to the scar tissue on her lungs from chemo. All the same test were ran, EKG, x-ray, blood work, but everything came back excellent. Which under normal circumstances would make a mother relieved. Nope, not me. I was confused. I was sure the doctor thought I was one of those mom’s that want their child sick for attention. Her physical condition wasn’t adding up to her symptoms.

When it was time to be discharged, the doctor came in and dropped a bomb I wasn’t expecting. He said all the symptoms seem respiratory and I can see why you would think that. Actually I think we are dealing with anxiety. A light blub turned on. Everything started making sense. I wish I could say I was relieved.

Just like when she was diagnosed with cancer, I had know idea what to do or where to turn.  Anxiety doesn’t seem like a bad thing. At some point everyone experiences some form in their life. It’s usually brief and disappears as quickly as it came on. For Mallorie it is consistent and always present. What a horrible way to feel.

I am no therapist (she is going to start seeing one) but I am going to bet, knowing her since birth, she has always had some form of anxiety and cancer just raised it to the surface. Cancer is such an ass. We were supposed to be done and moving on, but now we have to deal with the traumatic mental baggage that comes with cancer.

I started doing some research on anxiety and how to be a caregiver of someone with such an illness. What sucks is that everything I have been doing and saying to her thus far, is exactly what a caregiver should not be doing and saying. Talk about feeling like a jerk.

Today I am just tired. Tired of the worry. Tired of wondering what is going to happen next. Parenting is hard enough under normal circumstances. All I know is I want to be the safe place for Mallorie and learn to understand how to deal with this. I struggle with patience and I have to focus on being more in control of that virtue.

If you have some positive insight on anxiety I would love to hear it. I am not about to even pretend I know what to do.

Get Ready For A Beautiful Surprise

13221662_10208455825367183_8776283273778658298_nI never knew I could care so much about the life cycle of a butterfly until it was told by first graders. Today my son was part of his first-grade play called, Becoming A Butterfly.

The play begins on a warm day in early spring. A tiny egg is laying on the leaves. Fred, the frog, is keeping guard of this little egg, keeping the birds from eating it. The birds are hungry, but Fred is persistent on allowing this egg to be left alone because something beautiful shall come from it.

Egg, caterpillar, pupa, butterfly.  

As I watch this performance, my heart was full of joy. Logan looked so cute as Fred the frog and he said his line perfectly, “Get ready for a beautiful surprise!”  To me, this little play meant more to me than the story of a butterfly. It was symbolic for how fast our children grow up.

Like Fred, when our babies are born, we want to keep them safe and sheltered. Then as they grow, we give them a little more freedom. Then before you know it, they are spreading their own wings and flying away, strong and beautiful.

The boy did an amazing job with his three lines. And he wore that frog costume with pride.  I can’t believe my little dude is going to be in second grade.

I am so honored to get to be his mommy.

A Boy And His Thoughts

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It is so funny what the boy thinks is awesome. He loves WWE, skateboarding, Star Wars, Xbox, Sponge Bob, YouTube, Roblox, and Happy Meals. I don’t think there is anything that comes out of that kid’s mouth that doesn’t either make me laugh, smile or completely melt my heart.

This morning while I was getting around, he walks into my bedroom and says, “Mom, I can wipe my own butt now and I am a good reader.” 

That had me busting up laughing. It amazes me how his brain works and how he categorizes things.

It is true though. He can wipe his own butt now and is a good reader.

Bragging moment:
Yesterday when we received his report card, there was a slip of paper included that stated he is a Star reader and reading at a 2.3-3.3 level. He is in first grade, but he can read anywhere from a second grade third semester to a third grade third semester.

That makes me so happy because I didn’t enjoy reading until my adulthood and to know he is good at it and somewhat enjoys it is an excellent start for his education.

I try to place how he became so advanced in his reading abilities. He did attend preschool and did well in Kindergarten. My guess is it’s my awesome parenting skills and allowing him hours upon hours on the iPad. (Insert sarcastic tone here.) But it is probably because he has such an amazing school and wonderful teachers.

Now for the butt wiping part, we’ll give daddy the credit for that one.

 

 

More Precious Than Gold

As we enter the middle of September, I love seeing all the gold supporting childhood cancer. Cancer is an ugly beast that tries to steal everything it can. Not only for the patient, but family and friends of the fighter. It rips away strength, energy, joy, time, laughter, patience, money, relationships and even hope. It is hard to watch your loved one suffer and struggle, but it is heartbreaking when you have to watch your child be poked, hooked up to numerous machines, vomit violently because of their medicines, cry in pain and whither away to almost nothing. And all you can do is watch, praying the pain will subside, the vomiting will stop and their strength is regained.

For over a year, Mallorie has been able to live a “almost” normal life. With the exceptions of her daily oral medicines, weekly blood draws and methotrexate shot, monthly IV chemo and quarterly spinals, she is finally able to be a 13 year old. She has not been hospitalized in over a year. She struggles often with headaches and upset stomach, but to look at her, you might not even be able to tell she is being treated for leukemia. Her hair is still thin, but is slowly growing. Unless she wears a swim suit, you can’t see her port scar. And you would only notice her moaning and sluggishness she has after a full day if you were here at bed time.

Even with all the good we are experiencing in our journey, I am troubled. I am troubled because I find myself forgetting what she went through in those early months of treatment. The long, sleepless nights. Constant worry and fear of what was going to happen next. The endless hospital stays. All the tears. I can’t help but think, how can I help spread awareness of this horrible disease, if I, a mother of a child fighting cancer, can’t even remember our own experience? I don’t want the past 639 days to slip away and become I distant memory, yet I don’t want cancer running our lives. And honestly, it’s not even something I think about every day. Maybe that is normal? I am not sure.

Mallorie’s treatment is broken up in different phases. I don’t have her road map (term used for a treatment plan) in front of me, so I can’t remember all the different phases, but you can be sure they all sucked. She is currently in the maintenance phase and thinking back to when she was first diagnosed, I can remember saying we would never get to the last phase. It seemed so far away.  And I can still hear her oncologist saying, “Just take it one day at a time”. And now we only have 29 weeks left of treatment. That’s only 29 more shots, 29 more labs, eight more IV chemo sessions and 2 spinals. That has me pretty freaking stoked.

Last Saturday, I was connected to with a mom who’s son was diagnosed with leukemia in June. We chatted on-line with me sharing Mallorie’s story, me reading her son’s story, her asking me questions and me sharing our experiences. It was one of those moments where you just know your journey has meaning and purpose.  I remember being the one on the other side of the chat. The one who was up all hours of the night researching and worrying. Even though leukemia isn’t always on my mind, when I do think back and relive our experience, emotions come flooding in. I experience the pain, sorrow, and worry. I can smell the hospital. I start to feel my body ache from lack of sleep, roller coaster emotions and remember how for months I functioned on auto pilot. But in the same breath, I sense the warmth, love and prayers so many people provided. (And let’s not forget Joni’s scones!)  And now, I get to be someone that gives support. That is a priceless gift I do not ever want to lose or take for granted.

Before I became a “cancer mom”, which I think is a legit term, I never concerned myself with kiddos who were ill. Of course, I would give to causes that were brought to my attention, but I never lost any sleep over it. I would feel sad and even thankful that all my kids were healthy, but not once did I put myself in the parent’s shoes. I simply would go about my life, striving to be the perfect little family with no issues. Oh how Dec 15, 2013 changed me. Not only did Mallorie’s diagnoses slap me in the face on how precious life is, but it opened my eyes to how freaking messed up we are.  Not just in the form of cancer, but in life as a whole. The things I would stress over and put as the priority where simply things that fade. We are blessed and I know this. I get to hug my daughter (all my kids) every single day. Many parents are not so lucky. Cancer and other illness have taken their precious gift and they only have memories to hold. I have no idea the pain and loss a parent feels over losing a child, nor do I ever want too. But I have seen the fear in a mother’s eyes and witnessed the agonizing pain of a child gone way to soon. That alone is unbearable.

One in 330 children will be diagnosed with cancer before they are 20 years old. That may not seem like a big number, but what if your child was that “one”? I sure didn’t think any of my children would get cancer. Awareness is crucial to ending this horrible disease. As I close this post, since September is Childhood Cancer Awareness month, I just ask you to take a moment and pray for the kids and their families that are dealing with cancer. Don’t just pray for the child, pray for the parents and siblings. Pray for the grandparents, caregivers, aunts and uncles. Everyone in the family has to cope with the ugly monster. In showing support of Childhood Cancer, it’s not too late to wear gold at least one day this month. If you do, we would love for you to show us. If you have FaceBook, you can like our Team Mallorie page and post a picture of you sporting your gold. It doesn’t have to be a cancer shirt, just something gold. The link below should direct you to our page. You can also follow Team Mallorie on Twitter where we periodically share information on childhood cancer and other random things. Usually whatever Mallorie tells me to post. So yes, it can be random. LOL!

Facebook: https://www.facebook.com/Team-Mallorie-571297976278959/timeline/?ref=hl

Twitter: @mallorie_team4

Thank you for reading and may your day be blessed.

A Little Bit Of Venting

It is frustrating, as a parent, to try to do what is right when it comes to the health and well-bring of your children. Especially, when you have a child with an illness, like cancer. Some people just don’t get it.

 

One thing I have learned over the course of Mal’s treatment is ~ it’s not about me. It is about what is best for her. Everything in her environment needs to be  considered. Putting her needs above my own agenda is a must, because the littlest things can be a big deal for her. And I have a hard time handling environments I can not control. It causes worry and fear.

The only thing I can hold onto is the fact that God loves her, and all my children, more than I ever could.

We All Need A Little R&R

Take care of yourself. Make sure you get enough rest. Take time to focus on you. 

Those are statements I have heard a million times. It is hard, when you are a parent, wife, co-worker and friend, to take time for yourself. Just when you sit down to take a breath, someone needs something from you. I don’t think that is a bad thing, ya know, to be needed and wanted. But I will admit, from time to time, I get overwhelmed with my responsibilities adulthood brings. Trying to juggle home, work and social life can really bring a strain when you are trying to be all things to all people. And of course to add to the stresses of every day life, I am also managing and taking care of a child with cancer. (On a side note, I am not sure which is worse, dealing with a 15 yo teenager or my 11 yo cancer child. Stay tuned for a post about that. LOL.)

I can not think of a time in my life where I have been more stressed out. I remember thinking college finals were stressful. Then I started working in the advertising world  and that was stressful and demanding. Wait, having a husband and a baby was stressful, demanding and overwhelming.  So why not add two more of those. Kids, not husbands. But trying to manage home, work, kids, job and cancer is really putting a strain on me mentally, emotionally and physically.

I think I do a pretty good job of keeping it together, from work meetings, school functions, doctors appointments and house duties, but here lately I just have not been feeling like my normal self. I have become easily fatigued, grouchy, foggy and unmotivated. It seems like I have been this way for years, but reality is only a couple of months. Everything I tried to feel better wasn’t working. I could tell something was wrong health wise, but couldn’t put my finger on it. I started with allergy medicine, (living in the midwest it is allergy season 24/7) and that wasn’t getting rid of the symptoms of stuffy nose, headaches, dizziness, clogged ears, the normal allergy signs. I let it go for about two weeks and finally called the doctor. I got in and he said the same thing I already knew, allergies. So he gave me antibiotics and told me to take Claritin. Sweet, no problem. I knew I would be back to my ol’ self soon.

I finished the antibiotics and still was not getting better. I was so bummed. I was tired of feeling like crap. I kept thinking, I am too busy to be ill. I will just ignore this a keep on trucking. A week later I was in the ER for a UTI. A UTI  is really far away from my sinuses, so where in the world did that come from? So, I was given antibiotics for that and said I should be feeling better in no time. Great! I was excited to be feeling better in that area too. Still fighting the head cold from hell, I did get over the UTI and was feeling better. I still kept pushing myself, even though my husband kept telling me to rest. He kept saying something is wrong and I should go back to the doctor. I kept blowing him off because deep inside I knew there was something wrong, but I didn’t have time to deal with it. I am the amazing woman ~ no time for sick.

Anyway, about three weeks ago Mallorie had a spinal and chemo. I felt horrible, but I got out of bed early that morning and we went to the appointment. I could not breath out of my nose and I had no energy. I wanted to crawl in a hole and die. I actually curled up in the bean bag on the doctor’s floor and slept while Mallorie was getting treatment. By the time we got home, I was running a fever, had the chills and pretty sure I was going to die. Rob loaded me up and took me to the ER, again. Diagnoses, sinusitis. I got another round of antibiotics and a steroid. This time I know I will get better. Right?

I took my medicine just like I was directed. Starting feeling better. I could breath out of my nose, the pressure was pretty much gone and so was the dizziness. I am on the mend! I kept up my busy schedule. All the hustle every mom knows. I was still very tired and my body ached really bad. I was not sure why this was happening. My upper back was achy and my lower chest felt a bit tight. Breathing was becoming painful. I was told I now have pneumonia. What the heck? Are you serious? I have never in my life had sinusitis or pneumonia. And within two weeks, I have both. This is not ok.

I received my first breathing treatment yesterday. Worked really well. I was given MORE antibiotics and an inhaler. I now notice that breathing is rough at times and my body still gets very achy, like I don’t even want to walk. I get tired just walking down the stairs to the basement. I have started coughing a lot and it hurts. It is really no fun. I am just praying that this time the medicine works and I will start to be back to my normal self soon.

I feel guilty for being ill for so long. I feel like I have let my family and my job down at times. I take my role as wife, mom and co-worker very seriously. And I would feel horrible if I gave my illness to my husband and kids, especially Mallorie who has a jacked up immune system already. I now understand how important it is to truly take care of yourself first. I am no good to my family or work if I am not healthy. I have got to get it through my thick head that I must take time for myself and chill out every once in a while. The past couple months I have felt worthless and miserable.

One hand full of rest is better than two hands full of work and trying to catch the wind. Ecclesiastes 4:6. This verse reminds me that I don’t have to be everywhere all the time. I don’t have to try to be Wonder Woman trying to save the day, or conquer the laundry in single bound. If I don’t ~ oh well. As long as we have clean underwear, I should not feel guilty if the laundry sits one day while I rejuvenate not just my body, but my soul. I write this post with the hope that others, who are in a similar situation will realize they are not alone and we need to take time for ourselves. We should not feel like less of a person because of it.  And since I have chosen to not take care of myself like I should, (I know my husband will read this and silently think to himself ~ I told you so.) I am having a harder time getting to 100 percent. I should have just stopped and rested in the very beginning. It makes me think of what my high school gym teacher, Teach, used to say, “Do it right, do it light. Do it wrong, do it long.”  Please take time to rest your body, mind and soul. The world will not stop and your home will not collapse. It will make you better in all areas of your life.

Blessings.

To Be Normal or Not To Be ~ That is a GREAT question.

It is so hard to believe that all the kids are back in school. To that I say, YES! It has been five years since I have had all my kids in school. On my days off (Monday and Tuesday) I find I have some down time to myself. No kids to pick up, no doctor’s appointments, no grocery shopping. Just me and the stillness of our home. It’s been total bliss. Things during my alone time feel normal. At least until that blasted school bell rings.

Google defines normal as conforming to a standard; usual, typical, or expected.

Things around the Baron house seem to run pretty normal. Between my independent, beautiful sophomore wanting to drive all over, my  little  man running around shouting football plays to his plushies, and my strong-willed, cancer fighter, trying to convenience me it would be okay if she went swimming even though her port is accessed, is normal for us. But what is normal anyway? Google defines normal as conforming to a standard; usual, typical, or expected. Sounds good, right? I mean who doesn’t want a normal life? Who doesn’t want to live a life where everything is played out by the book? Where you know exactly what is going to happen?

Before all the chaos started in December 2013, I thought we had a pretty “normal” life. But when you are thrown one of life’s curve balls, you realize your life wasn’t normal, it was stale. Doing the same ol’ thing day in and day out. Stressing out about keeping up the routine and not deviating from the schedule. You go about your business not realizing all you are missing out on by staying in your comfy little lane, doing what you normally do.

 Dinner doesn’t have to be served by 6pm and if you happen to skip bath time to have more play time, your kid’s skin will not rot off.

Since that December, I have learned so much about the importance of life. Not just with Mallorie’s illness, but with other things as well. I learned that even though you have a 15 year-old daughter, who you think wants to take care of herself, really needs you around. (Even if she rolls her eyes.) And the little precious son who wants you to play with him, even if it is just for 10 minute, loves you more than Madden 25. You have extended family and precious friends who are there for you at the drop of a hat, even when you can’t be there for them. You realize after being cooped up in a small hospital room  you actually miss fresh air. You realized how much you miss playing Skip-Bo and Uno, because it wasn’t jotted down on the “to-do” list.  You learn dinner doesn’t have to be served by 6pm and if you happen to skip bath time to have more play time, your kid’s skin will not rot off.

“As long as everything is exactly the way I want, I am totally flexible.”

I have this tendency to make myself stick to a normal routine. Yes, I do believe you need a good solid structure, like a set bed time, no texting of phone calls after 10pm and not skipping breakfast, but I discovered that the more I try to control what I defined as normal, the more I realize I have no control at all.  I read a quote once that said, “As long as everything is exactly the way I want, I am totally flexible.” Heck yeah, sounds good to me, right? In a perfect world, of course, but we all know we don’t live in one of those.  So one of the many things I have taken from this whole cancer experience is uncertainty is my new normal. And I use that term because you just never know from day-to-day what you’re in for. And really, if you think about it, you don’t have to be going through some traumatic experience to understand that concept.  For me, this could mean Mallorie woke up with her mouth covered in sores and a fever, that means off to the doctors. I didn’t have that programmed in my reminders on my phone. Or it could be heading out the door, with kids in tow, stumbling upon a stupid, flat tire. Great! Now we are all going to be late! How about just getting into work, all ready to start your day and the school calls to let you know your son stuck a pencil up his nose. EEK! Didn’t see that marked in the Day Planner.

I think if we can stop worrying about being so normal and learn to be more flexible, we would find uncertainty isn’t so bad. I am not saying toss your responsibilities out the window and make life a free-for-all, but since life is going to get messy from time to time, might as well put on your mud boots, put down the to-do list and join in by making memories instead of missing out by being a control freak.

As I close, I leave you with a music lyric from one of my favorite bands, REO Speedwagon:

So if you’re tired of the
Same old story
Turn some pages
I’ll be here when you are ready
To roll with the changes
Roll with the changes

I know the song isn’t about rolling with the changes I wrote about, but it was the song that kept playing in my mind as I typed this post. So in my mind it makes sense. LOL!

God bless.