A Special Kind of Hard

Hello, and welcome back to StrodeDad. Thank you for coming back and taking the time to read my latest post. I'll say a prayer, and then we can get started.

Dear Lord, thank you for today. Thank you for allowing me to express my thoughts and feelings in this way. Lord, I ask that you guide me as I write today so that I might deliver the message that my readers need to receive. I ask Lord for your healing in my heart as I write. As oftentimes people do, I have been holding back to protect myself, Lord, and I don't want to do that anymore. Please, Lord, help guide me in my writing to release the hurt in my heart and gain healing. Thank you, Jesus, for all that you sacrificed for us, and thank you for your love, mercy, and grace. I love you, Jesus. In your holy name, I pray, amen.

So this week's post is going to be a bit different than normal. I typically talk about how Adeline is doing and how the family is doing, etc. But something has been weighing on my heart a bit. So I'll give a quick update for Adeline and then get to the meat and potatoes of it all.

So as you all know, Adeline and I were in the hospital because she had gotten a fever while neutropenic. That means we stay there until her counts start to go up. Counts started to rise, and then, through stupidity, she got sick with the rhinovirus, or essentially a common cold. That cold knocked her down, and we ended up spending another week in the hospital because of it.

Her numbers still technically aren't up to where they need to be, but they were making progress enough that the doctors felt we could go home **By the time this publishes, they will be where they need to be**. So we made it home Friday the 18th. But while we were at the hospital because her counts were taking so long to recover, we missed chemo this week, and she had to start receiving daily shots to help boost her bone marrow and help those numbers come back up.

So you are essentially caught up but remember the shots because I'm going to circle back around to those in a bit.

So at this point, you are probably like, "ok, so I wonder what's going to be different about this blog than the others." Well, that's pretty much all the updates I'm going to give on Adeline. In this entry, I want to focus on what I, as a father and as a man, am feeling about this journey so far.

I've mentioned in the past that, as a man, we are taught to bottle up those emotions and be the rock of the family. I've never much bought into the whole keep your emotions down thing because I felt like I was the kind of guy that wears his heart on his sleeve. But the more that I go through this, the more that I realize that I am the same as a lot of the other men, the other dads that go through what we are going through.

I'm part of a dad's childhood cancer support group, and the more I read, the more I realize that there are a lot of men dealing with what I'm dealing with. There are a lot of men who want to express their anger, frustration, heartache, and sadness. The more I communicate with them, the more I realize that I fall into that same stigma of keeping my emotions in check to be the rock.

Now, with my family, I would definitely say I am a rock. I will always bear the weight of this family and bear it to the best of my capability. But in the same sense that I bear the weight of the family, Erika bears it in a different way. I can't speak to that way because I am not a mom, nor am I a woman. I firmly believe that we each experience this in similar but different ways. She never wants to put more on my shoulders, so to speak, but I tell her all the time I can handle it. And I can. I can and I always will.

But what happens when you bear that much weight? What happens when you are the rock of your family? I know that I can talk to Erika at all times about anything. She is my rock, my spousal rock. No matter what I do, if I talk to her, she has a way of making me feel better. Her love and support are unending, exactly as a wife's should be. She's also the person that's going to tell me when I'm wrong or when she thinks I'm being stupid, and Lord knows all men need someone like that in their life. Because let's face it, men can be pretty stupid, and if we don't have someone to tell us when we are being stupid, then bad things tend to happen. Usually, those bad things end up involving broken bones, missing limbs, hospital stays, etc etc.

All kidding aside, Erika is a fantastic wife and really, to her core, loves me and supports me, which is exactly what I need. I share everything that I can with her because I want no space between us. She is my rock here on Earth.

But Jesus is my heavenly rock, my spiritual rock. And whenever I am feeling weak, scared, anxious, angry, sad, or frustrated, I know that I can turn to Him for guidance.

"Truly my soul finds rest in God;

my salvation comes from him.

Truly he is my rock and my salvation;

he is my fortress, I will never be shaken." (Psalm 62:1-2, NIV)

When I turn to Jesus, I know that I can lay my worries at his feet. I'm sure that a lot of people, especially people going through times of trouble, question what this does for me. What does telling Jesus my problems give me? Does it change the circumstances? Does He intervene and make everything alright?

So there are several answers to those questions. First and foremost, what telling Jesus gives me is peace. Laying my problems, my fears, and my weight at his feet gives me a sense of peace that I can't quite explain. I suppose it's like confiding in the person you care about most in this world. When you do, you just feel better; something about your soul just feels at rest. That's what confiding in Jesus does. For some, scripture is enough evidence of this.

"Cast your cares on the Lord

and he will sustain you;

he will never let

the righteous be shaken." (Psalm 55:22, NIV)

or

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” (Matthew 11:28-30, NIV)

or

"Cast all your anxiety on him because he cares for you." (1 Peter 5:7, NIV)

For others, they need physically viable evidence that it makes a difference. I think that sometimes people forget that is what faith is all about. Faith isn't about signs. Faith is believing even when you can't see. I have faith in the Lord. In that sense, I will say, though, that it doesn't mean that I haven't seen evidence that inspires my faith even more. Each instance is something that could be explained by normal means, but in my heart, I know they are small gifts from God.

But what does any of this have to do with what I was talking about before? Well, I'll tell you, sometimes men turn to God. A lot of times, men will keep to themselves and create a facade of being ok. I've done this many times. Let's grill and chill, laugh and have a good time, and pretend that we aren't screaming on the inside. Let's pretend that we aren't ready to throw our fists through the wall.

That's what it is, isn't it? We are so mad! We are so Angry! Time and again, I see posts of men that are broken. Time and again, I see posts of men who've lost everything, are on the trail to losing everything, or are scared of losing everything. Men just like me, men who've felt their whole world being torn apart. It helps to know you aren't alone and that there are other men who are feeling and dealing the same way you are. It helps to have a brotherhood.

When you go through this, you mostly hear women who talk about what they are feeling and how they are handling things. They come together in the most spectacular way. In a sense, I almost envy them because most men are too proud to say they are hurting. That's why we have our secret groups where we can go to other men and share our hurt. That's where we go to share what I'm about to share with you. I'm going to share my special kind of hard with you today.

In my last entry, I told you that I felt responsible for Adeline getting sick. And in a way, I was. I was at least partially responsible for her getting sick. It may or may not have happened regardless, but I know that in my heart, I blame myself. I shared this with Erika. She, being the loving wife she is, assured me that there was nothing I could have done and that I did what I could to keep her safe. My heart doesn't feel that way most days. Most days, I feel as if I let Adeline down, I let Erika down, I let our family down.

I was supposed to protect her. I was supposed to keep her safe while she recovered her counts so that we could go home. Instead, I let her get sick, and it kept us away from our family even longer because now her body had to fight off being sick instead of just recovering. I take that guilt on even though I shouldn't. It's not healthy. But I'd be surprised if every man in the same situation didn't also take that same guilt on.

"But we knew about that; we saw that last week Mr. StrodeDad sir."

You are absolutely right, I gave this little tidbit last week. But I want to expand this week on the special kind of hard that, as a parent of cancer, we take on. And in this case, the special kind of hard that, as a father and a man, I take on my shoulders. But before I get into this, I want to make the below statement.

I in no way, shape, or form am stating that only men do what I'm getting ready to discuss. There are plenty of women that have to do the same thing, some married and some that may not be. So in no way, shape, or form am I stating that what I discuss next is only done by men. I only put out there what I personally have experienced and that this is something that I take on. I fully know that Erika could do these things, but I would never ask her to do that. So long as I can do this for us, I will always do it. So let me show you.

There is a special kind of hard that comes from being a childhood cancer parent. There are things that in a million years you would have never done before but are required to do now. I can't tell you how many times I've heard my daughter tell me she hates me, or she doesn't like me or ask me how could I do this to her. It's words that sting like a million bees attacking your soul. When your five-year-old, with tears streaming down her face, asks you that question, your soul breaks a little bit each time.

That pain, that heartache that is what I take on. I take that for my wife. I take that for my children. Because that heartache, that pain, is something I would spare my family. It is something that I can't explain, a hurt that doesn't go away but is worth it in the end.

What is it that I do that causes this?

There are things that Adeline doesn't want to do. There are things that Adeline doesn't want to be done to her. Every time she gets chemo, she has to get accessed. And it seems like no matter how many times it happens; it isn't any easier. There are times when she does really well. Then there are times when I have to hold her still. I have to pin her arms to her sides, I have to hold her legs underneath my own as she screams out of fear. I have to listen and hold her still as she screams, "Please don't do this to me. Please don't do this." or "Mommy, mommy, please."

It's a feeling that you can't erase, a memory that is burned into your brain. Your daughter screaming that she's hurting because she can't move her legs or arms because you have to hold her still long enough for them to stick a needle into her skin to receive medicines that are going to destroy her body from the inside out.

But it doesn't stop there. She takes oral medicines, which until just recently were all liquid medicines. And as we all know, most liquid medicines do not taste very well. So Adeline hated them. Usually, bribery will work to get her to take her medicines, but eventually, she has had enough. When that happens, what do you do? A father in our group asked what he could do because he didn't want to traumatize his child by forcing them to take the medicine. But the unfortunate reality is if they can't take a tablet, then they have to take liquid medicine.

What does that mean? That means when they refuse to take it, you have to make sure they get it. What does that mean? Well, during this most recent stay at the hospital, Adeline had to take medicine to help her go to the bathroom because she hadn't gone in six days. To prevent her from getting impacted, she needs that medicine, but she hates it. She refused to take it. I had to sit on her bed, pull her onto my lap and hold her still. I have to hold her with one arm so that she can't move while taking the medicine and squirting it into her mouth with the other.

It worked, she got the medicine, and later that day, she went to the bathroom. But for that thirty seconds to a minute, I was everything she hated in this world. And sometimes, it doesn't stop there. Sometimes that mentality persists for hours before she moves past it and is able to look at me without anger in her eyes.

But that isn't the only time. Sometimes even in the middle of the night, it can be a struggle. She's tired, and she is tired of getting woke up, but when they have to take vitals, they need an arm and a finger or a leg and a toe. There are times when Adeline wakes up and refuses to give them her arm or finger, and I have to hold her arm or her fingers out for them just to take vitals.

And now, remember those shots I told you about before?

Adeline has to receive a nightly shot. This shot is very similar to the shot she receives at the end of chemotherapy. The shot helps boost her bonemarrow, helping it to recover faster. I attribute it to almost being the same as if you and I were to take a vitamin C booster to help us recover from being sick faster. Each night I have to put lidocaine cream somewhere, either on her legs or arms. I have to cover that cream with Tegaderm so that the cream stays on. I let the cream sit for an hour, and then I remove the Tegaderm and cream. And for anyone who doesn't know what Tegaderm is, it is that clear white bandage that they put over IVs or over something that they don't want dirt and germs getting into. It is very sticky, and it hurts like heck to take off.

So now that I have gotten the Tegaderm and cream off, I have to clean it with an alcohol swab. While probably one of the easier parts is something that Adeline hates because she hates the smell of them. From that point, I take this shot, and I give it to her wherever the cream was. It doesn't stop it from hurting. Sometimes it still hurts when it goes in. Other times it's the act of the medicine entering her body that hurts. Sometimes she is ok. Other times she screams and starts to cry.

This has become our nightly ritual. I give Adeline the shot, and Erika tries her best to distract her while it's happening. Then when it is done, she does her best to comfort her. Meanwhile, I try my best to reassure her that she did a great job. But as all of you probably know and understand, no one wants to be told, "Hey, you did a great job," moments after getting hurt by something.

This isn't fun. It's not fun playing nurse or doctor. It isn't fun watching your daughter be in pain because of something you did. It isn't fun watching her be in pain because the alternative to that pain is worse. But I give the shots because that is what I need to take on for my family. That's what she needs. Erika could do it, I know that. But I don't want her to have to experience the pain of having to hurt her child in that way. Nor do I want Adeline to ever look at Erika the way she looks at me when it happens. I want her to keep looking at Erika for comfort and reassurance.

All these moments add up. All of these little things that she hates that I force her to do add up, and it takes its toll.

She loves me. She loves me so much, and she is so sweet. I know that when she calls me names, it's out of frustration, sadness, and fear. When she says she hates me, it's for those very same reasons.

It's sad that I have to think to myself, "You can be mad at me, sweetheart. You can hate me all you want. I can take it. Because if I don't do this, if I don't make you take this medicine, if I don't let you get accessed to receive chemotherapy, then you could die. So be mad at me, hate me in those moments."

But I feel that way because I'd rather her hate me for a day or two hours or have memories of me forcing her to do things she didn't want to do than ever once look at her mom that way. It would break my heart if, even for a second, she looked at her mom that way. And I know deep down that any father, any husband, would feel the exact same way. I know that Erika doesn't want that for me either, but I know that as Adeline's father and Erika's husband, it is my honor and my love to be that for them. I am their rock, I will be their rock. And when I feel weak, I will turn to Jesus for strength.

"Cast your cares on the Lord

and he will sustain you;

he will never let

the righteous be shaken." (Psalm 55:22, NIV)

Jesus is my refuge, and I can't say that enough. Men and women each feel this special kind of hurt in their own way. Not every woman is a sharer, but I would say there are far more women sharing their pain than there are men. So when I see a system that allows men to privately share their pain, privately share their feelings that they may not feel comfortable sharing elsewhere, I applaud it. Men need to learn to be more open, and as much as women need that support, so do men. We just loathe to admit it.

I hate admitting that I need it. All I want is to be the man my family needs. All I want is to be a man that doesn't need help, that can handle it all, and not need to talk about it. I could keep it all in, but what will that do?

What it won't do is help others.

What it won't do is bring glory to God.

What it won't do is show the world what we go through.

So I write, so I speak, so I take it to Jesus and lay it at his feet. So that is what I want to do now. Let's go before the Lord in prayer.

Dear Lord, thank you so much for your love. Thank you for the amazing grace and peace that you give us. Today Lord, I want to pray for all parents out there taking this pain and this special kind of hurt and bottling it up. Lord, I pray that they can bring it to you above all and lay it at your feet. I know that if they do, Lord, they will feel peace in their lives. I pray as people read this that they see our special kind of hurt. I pray that people see our hurt and our pain and recognize it and acknowledge it. I hope that reading this inspires others to share their hurt, their experience, and their love, and it brings awareness to childhood cancer, but even more importantly, it brings people to you, Lord. I pray that even just one person reads this and says, maybe I'll try and pray to God about it. Lord, I know that when they do, you will be there waiting with open arms. Thank you, Lord, for always being there for all of us. We love you, Jesus. In your holy name, I pray. Amen!

Thank you for taking the time to read this today. I hope you found it enlightening and eye-opening. Please feel free to leave any comments here or on my StrodeDad Facebook page. And don't forget to subscribe and share this with others that you feel may benefit from it. Until next time...