Deep Truths

The pain cuts like a knife. It hurts so bad that I've just become numb and accustomed to it. I'm so good at pushing it down, it's unhealthy. Long gone are the days of 'I can't wait to do this with my kids,' or 'I can't imagine having a sick child.' Now are the days full of 'oh look, he's doing something I wouldn't allow him to do for 1 1/2 years.' Time. Wasted. Worrying.

I called it protecting then, now I'm just overcome with anger, pain, sadness, and disappointment. How could I, as his mother, not allow him to be a child. And his sisters too! And still have the confidence to convince everyone I was protecting him. I was only protecting me. My heart, my aching heart. It was all a facade to protect myself. I sure put on a tough face for everyone else, my kids, my husband. But only 1 or 2 people really saw the broken me. I wish they were no more, but the nights I laid in bed sobbing still happen. More often than not, it starts when I kiss Aidan goodnight. Just tonight he was going on and on about the things he loved the most about our Make A Wish trip, his favorite people, and 'hey mommy, remember this!!!!' And I'm reminded of all the moments on that trip where i watched Aidan's face literally light up from excitement and joy. And all because I finally didn't have to protect him. He could've eaten dirt for all I cared, he was off chemo. I missed out on seeing that boys face light up in ways that I can't even describe, for 1 1/2 years, because i was scared. Shame on me. 

It is so hard to be done with treatment. And boy do I ever understand how lucky we are to still have him, and not be discontinuing treatment because it's not working. Palliative care and hospice were words that never came out of our doctors mouths. But holy moly I don't think I'll ever get over how unfair it is that this happened. Not just to my son, but to all the children affected. I lose my breath just thinking about the possibility of him not making it, or relapsing. Yet there are families who find the strength to wake up and smile, but they actually lost their child. It's a sickening perspective. 

I'm not sure that anywhere during Aidan's journey I ever stopped grieving. I just became soooo good at it that even *I* was convinced I was coping. Grief has no timeline or life expectancy. It comes with it's own ebbs and flows. Someday I hope I can finally tell someone who asks how I'm doing, that I'm starting to heal. At what point does a parent of a childhood cancer survivor EVER reach the point of not letting a relapse or new tumor growth, control their life? Maybe with time.....

The Beginning of the End: Catching Up

It's been awhile since I last let it all out in words. Mostly because the last 5 months have honestly been the worst 5 months of my life. I found a new lowest of lows, watched as my son almost died, watched as he bounced back like nothing even happened, almost lost my husband, and in the end our family took a once in a lifetime trip to Disney World--all to celebrate that little boy who puts my heart through the wringer. I am grieving yet again. Or maybe I never stopped, I don't know. 

It all started when Aidan spiked another fever on January 1st. Off he and I went to the hospital. The next day, after a series of events, his fever jumped to 105.2 and I had a really bad feeling about it. High fever + brain tumor = not good. He had a severe febrile seizure. His airways collapsed, he couldn't handle any external stimuli so I couldn't even touch him or talk to him without sending him over the edge again. It took 4 different medications and 2 1/2 hours for him to finally stop fighting. He stopped breathing and was immediately intubated and placed into an induced coma so his brain could rest.  Legitimately, the worst experience of my life. I could not stop crying. I was flooded with nightmares and flashbacks of the moment he started seizing. Hindsight is always 20/20 and I still wish I would've done things differently.  In the end, he woke up around 4 days later and struggled with walking and talking. It was scary but he prevailed! Never even skipped a beat. Unlike my heart. He has been seizure and fever free since that hospitalization. 

March 14, 2014 my sweet little hero finished his chemotherapy protocol. A day full of excitement and thrill....and terror as you realized that the controlled poison he had been pumped with to shrink the tumor, was no longer being administered and providing a sense of relief. It's an odd emotion, very bittersweet. It brings a lot of fear with it. 

April 3rd, 2014 was finally my opportunity to close the most horrendous chapter of my life. Partially. Aidan's port was removed. That port was the reason we were admitted with every fever. It was what took me away from spending time with my girls, my husband, my home. It separated my family and it never got any easier. Good riddance you pain in the ass, life saving piece of medical equipment. I took Aidan down for his surgery by myself so I really had an opportunity to be with myself and God, level things out to a point. I wanted to cry, from every pore on my body, but I held it together because the happiness far outweighed the sadness. For once. 

During all of this, I was exchanging emails with our state's Make A Wish coordinator. To send my family to the happiest place on earth--Disney World. To spend a week at Give Kids The World. It should also be known as the emotional breakdown you never expected. To watch as volunteers selflessly give of themselves to children with life threatening illnesses--humbling. The kids were amazing, too. The look on their faces when they saw another character they loved just filled my eyes with tears. In fact, the first full day we were there Mickey Mouse himself was at the village. When he spotted him, Aidan took off running towards him exclaiming, 'Mickey, you're my best friend!!!'  Trip=made. There are so many memories to share from the trip but I'm still taking it all in myself. The people. I wish I could've put them in my pocket and brought them home with me :( there's a definite void in my heart now that we're home. And we will definitely be a Welcome Back Family and volunteer for a vacation. 

Be still my heart, as we embark in this new journey. A new chapter. A new opportunity to pay it forward after being blessed by multitudes of people over the last year and a half. To encourage, to provide hope, to comfort, to be a living testimony to God's work in our lives. And when all is said and done and I've kissed my babies goodnight, I've cried my tears for that day, I am still left saying thank you God for the journey. Thank you for your work in me. Thank you for knitting Aidan together the way you did and giving him to me, because I wouldn't want him any other way. 

Struggles

I would like to preface this post with a reminder that I know how lucky my family is. We are fed, clothed, and kept warm and there are others who aren't. Our cancer diagnosis isn't terminal like many others. We are rallied around by those who love us. I know we are blessed. But that doesn't mean I'm not allowed to have bad days or think the following ramblings. (Please excuse any offensive language.)

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Am I a bad mom? While those exact words may not come out of anyone's mouth, it has been hinted at. Am I a bad wife? The same-it's never been said, only hinted at. I am a stay home parent so obviously I have the most time to clean the house, cook picture perfect meals from scratch, keep up with laundry and of course make sure not a single crumb is left on the floor at the end of the day. (Joke is on you!) the truth is, I'm far from being to accomplish any of these things. 

I had a friend who was talking to me recently, while trying to figure out the next way to bless our family. In not so many words, she pretty much said she couldn't imagine walking in our shoes. I cried because no one has been THAT honest with me since the beginning of this. I've held so much inside of me for that reason because I don't want to scare people with the dark places that exist inside me. It's really, really dark in there. 

People call me brave. I'm not brave, you fools. I'm scared as hell. There are so many details in my head that I've learned from our oncologist, that I spare people the details when they ask. I give generic answers. Like the likelihood of Aidan's tumor regrowing. The effect that the stupid tumor is having mentally and emotionally on AIDAN. He is not the same babe that went into surgery to remove that tumor. And I am most certainly not the same mama. 

I don't know how in the hell I get out of bed every day. All I want to do is hide. And sleep. And forget. God, I wish I could forget. But I'm forever changed. This dark place inside of me is haunting and it is what steals my motivation away. If I were to be evaluated by a medical profession on my mental/emotional state, I'm 99.9% positive they would find me legally insane. If I start crying, I won't stop. If I let every emotion that's flying around in my head, out of my mouth, it's game over. People will literally look at 

me funny. 

The easiest tasks are so hard for me. My sink is full of dishes? Who gives a crap, my kid has cancer. The kitchen floor has food from 3 days ago on it still? Go to hell, my kid has cancer. CANCER HAS RUINED ME!!!!! I have a huge heart for others suffering, but no room for mistakes from myself. The stress makes me tell. A LOT. And it's embarassinf because I'm so beside myself that I can't handle even the smallest conflicts anymore. My poor kids.  But I'm doing the best that I can right now. Just pray they don't remember their psycho mother during their toddler years. I hate to think I'm crushing their spirits, but I literally don't know what to do with myself. I know I need therapy again, trust me. But will that fix the damage I've already caused? 

Just know that cheery, positive and encouraging Courtney, isn't all she's cracked up to be. I'm hurting. But it's MY choice to display what I want to others. 

Friend, and you know who you are, thank you for your honesty. It's what I've wanted the most-someone who I can tell all these feelings to. 

Let's Get Real

14 weeks. Most people mark such a time frame in their pregnancy. Or how old their precious addition is. I mark it in how many weeks we have left in our 60 week protocol for chemotherapy. Most would be jumping for joy over this, elated to be almost finished with it all. 

You see, I am not most people. I am a worrier to the core. I live in fear, when I know better than to focus on such negatives. But with the end of chemo within my reach, thus signaling time for our Make-A-Wish trip to happen as well, I am plagued with worry. Surrounded by uncertainty. Aidan's prognosis is 90% survival after 5 years. He's not considered in remission until 5 years post treatment. What they DON'T tell you is what can happen during those 5 years. Relapse. A curse word in the cancer world. An earth shattering, soul crushing diagnosis. Aidan is at high risk for relapse for the remainder of his life. Will I EVER be able to live a normal life, without the fear of cancer plaguing me? 

I can't wait for that last day of treatment. I get teary eyed thinking about celebrating it. The end of a painful, terrifying time in my life. I'm sure I'll breathe easier for awhile. It will feel like a honeymoon! I dont have to ship Addilyn and Olivia off to someone's house one night a week so I can take Aidan to early morning chemo. We get to be a typical family. The uncertainty lies in this: right now I know Aidan is in good care and I'm not worried about this tumor because it's being treated and showing a response. After chemo is done. That reassurance is no longer there. But I crave reassurance. CRAVE IT. 

While this time in our lives is just temporary, I can't wait for the day that I can spend equal amounts of time with all of my children and not just focus on one. I'm tired of feeling guilty about my girls being shipped off to someone else's care. I want them in mine. I don't want to feel heartbreak each time I drop them off. I want to drop all three of them off for a weekend of fun, not a weekend bc Aidan is in the hospital. I just want it all over with. 

F U cancer. You may be winning the emotional battle, but you will NOT win the physical battle. I will fight until I can fight no more to make sure Aidan gets to live a typical life like any other child.  But I hate that I can't protect him from further hurts. 

No Guarantees

Tonight as I was tucking Aidan in, the song 'Wanted' by Hunter Hayes came on so I started singing it to him while he held my finger. I love singing to my kids. I watched as his eyes grew heavier and heavier, then for a second pop open and look into mine. I could barely hold it together. It makes me ache to know I cannot guarantee anything for him like I can his sisters. I cant guarantee he won't relapse at some point in his life, I can't even guarantee he will start kindergarten cancer free. And that kills me.

Music

"All I knew this morning when I woke is I know something now, know something now I didn't before."

Isn't it amazing how a simple line from a song can bring your world to an immediate halt? How it suddenly reminds you, on that sunny day while you're out living life like nothing is even wrong, that you're actually struggling to make it through each day. These lyrics came on and I immediately thought about how I know things now that I didn't before all of this cancer stuff happened. Damn those song lyrics for bringing you back to reality. There are many of you that trigger it.

As we approach flu season (aka lockdown in this house!), I'm overcome with jealousy, bitterness and a little sadness. Not because of just any ol' reason though. Rewind to 3 years ago and I had just given birth and was watching my tiny 2 pound babies fight for their lives. That's when I became a germophobe because things like the flu and rsv were DEADLY to my tiny loves. I lived in fear daily. Now, rewind to 2 years ago and I was preparing to take my babies trick or treating! So exciting considering they spent their first Halloween in the NICU. Then the fun dissipated quickly as they all got sick a few days after begging for candy. Finally, rewind to 1 year ago and I was living in limbo. Were these my final days with my son? His final birthday that I would get to spend with him AND his sisters together? Again, I started to live in fear. I had to keep him healthy for his upcoming brain surgery, so trick or treating was out. Bummer. And now, in the current, once again, I'm not allowing my child his own childhood, because of cancer. No trick or treating yet again this year.

I'm so jealous that I don't get to load my kids up and go shopping whenever I want without a care in the world about them getting sick. Keeping germs at bay is my fulltime job. I can't let then play outside on a somewhat chilly day because I don't want anyone to get sick. And boy do I feel guilty because I'm robbing my girls from their childhood too, because their brother has cancer. It's the herd mentality here-if one gets sick, they're all going to get sick. And my fear makes it so that the fear outweighs everything. My poor kids :(

I miss being normal. I miss not being that hovering parent at the playground or while grocery shopping and he touches the grocery belt (gag!). I just miss what it is like to be a relaxed parent! But now that I just explained it to you, maybe I haven't ever been that mom.

I want a redo of my kids' childhood. One where mommy doesn't feel guilt over every decision she makes to protect the health of one child, but ultimately 3. Someday I can give that...

Perspective. Again.

I am at a loss for words this morning. Facebook greeted me with the news of the passing of a sweet little girl. This family has been to Hell and back. And now to Hell again.

Sweet baby E had never left the hospital, she was 18 months old. She struggled with many health issues surrounding her lungs mainly. Had recently been given a new way of life via a trach. She was a changed babe-more active and energetic than I had ever seen her. And yes, that means I've personally met her and her family. Several times. Her momma was someone that I spent a decent amount of time with when Aidan and I were in the hospital together. I've interacted with baby E. Such a joy. And now I'm broken just trying to process the fact that she's no longer here. Her mom will probably never want to step foot in that hospital again.

In my previous post, I mentioned that the last year of medical crisis with Aidan has taught me perspective. Once again I am reminded of perspective.

The quote, 'the things you take for granted, someone else is praying for,' comes to mind this morning. While I feel as though I don't necessarily take having all of my children for granted, I do understand that my friend could now view our medical circumstances as a dream for her. She would give anything to have her daughter here, fighting cancer, than to not have her here at all. And for that, I feel selfish. Selfish because I cry over the fact that my son has cancer-when I definitely know how different our story could be. I could be crying over the fact that Aidan HAD cancer, but didn't make it. And now, I have to watch a friend ache over her loss of a child who HAD medical issues.

What do I even say to her? What do I even do for her? All I can offer are my prayers and leave the rest of it up to our merciful God. His plan is better than ours, no matter the cost.