Oh the Ups and Downs

Hello and welcome back to StrodeDad. Thank you for taking the time to come here to read what I have to write. It is an honor for me that you choose to do so. For those that are new, I hope you enjoy what you read here and come back for more each week. For those that are new and those that are weekly readers please feel free to subscribe to the site which doesn't give you anything special...sorry. But it does add you to my email list and I try to make sure I send out an email each week when I post my next entry. Who knows maybe someday I can get some #StrodeDad shirts made up and pass them out to my readers. Anyways let's say a little prayer and then get started.

"Dear Heavenly Father, thank you for all that you do for me and others. Your power is great and your love is greater. I ask today that you grant me the wisdom to know what to write and how to write it. I ask that you grant me the patience to take my time while I write and while I figure out what to write. I ask that my message be seen by those that need to see it and that it falls within your will Lord. In Jesus' name Amen!"

Boy oh boy, this week was rough on my writing process. I have been praying all week long about what to write about. To be honest I'm still not sure but I'm giving it a go. There are a lot of ups and downs when it comes to having a child with cancer. I can't even begin to list them all because there are just too many. Also, another reason I can't is that for everyone the ups and downs are different.

In the past week, I've gotten to meet via email, two other fathers who have been through what I'm going through and are currently going through it. It has been rather eye-opening getting to talk with them and share our stories. I'd like to personally thank them both for taking the time to talk to me as neither of them needed to. But what we get when we talk to each other about it is somewhat of a camaraderie. We know that the men we are speaking to have an inkling of what it is we are thinking and feeling.

I imagine too that you are sitting here imagining a couple of grown men in a room saying, "Hey I'm Brandon and my daughter has cancer, it sucks." then the other men in the room nod and grunt in agreement.

It's not quite as simple as that I suppose but neither is it us crying together and hugging it out (which obviously couldn't happen since we were speaking via messenger and email). It is a bit of the in-between. It is a sharing of the storms we are facing about our children's diagnosis or the outcome of the said diagnosis. It is the acknowledgment of the fact that we are not alone as men in this battle.

Matthew 28:19-20 says this, "Go therefore and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, teaching them to observe all that I have commanded you. And behold, I am with you always, to the end of the age."

I copied both verses because I didn't want to just pull the part that stands out to me. There are other verses that I could have chosen that are similar to this but I wanted to use this one because at the end it says, "And Behold, I am with you always, to the end of the age." We are never alone, a promise that Jesus himself gave.

But even though we have that promise, for those of us that believe, sometimes we still feel alone. Sometimes we look around and cannot see what others are experiencing so we do not know that they face the same struggle we do.

That is what getting to talk to them has meant. I know that I am never alone, Jesus is always with me, and Erika (my rock) is always with me and there for me. But to get to talk to other men about what it's like being a father and what it is like going through this is cathartic as I am sure it is for Erika when she talks to other moms and women about it.

I want to give you an example of one of the ups and downs that Erika and I experience with Adeline to kind of share what it is like.

Adeline is prone to tantrums. I don't say that as if it's odd because well what four-year-old doesn't throw tantrums? But I say it because there can sometimes be a difference in her tantrums. Adeline will sometimes be perfectly fine and then suddenly she is in tears and screaming and sobbing so hard she can't breathe.

We know that it can get this way for any four-year-old but it happens pretty regularly with Adeline. I think most, I'd say about 80% of her tantrums come from a place of being overwhelmed. She is too young to articulate how all of this impacts her so she has no real outlet to let out the stress and frustration of what she is going through. So sometimes I think that when she is just getting overwhelmed by it or frustrated by it all the smallest things seem to send her over the edge.

It can be hard to watch, it can be hard to withstand, and it can be frustrating because it is hard to see your child so upset. It is hard to know that she is just feeling overwhelmed and can't articulate that or even understand it. I think that is the saddest part for me. Sometimes the tantrums can be so frustrating and sometimes you can't tell if it's just her being a typical four-year-old or if she is just feeling overwhelmed. Not knowing whether it is a typical four-year-old tantrum or if she is feeling overwhelmed is even more frustrating for me.

It's frustrating because I don't know how to help. I think that's why it's important that I pray and ask for help with patience. I'm not always the best at it, sometimes I lose my temper, or sometimes it can hurt and I react. Most times I know it's just a matter of getting through the moment but sometimes it's hard to see through that.

There are moments where Adeline has been sitting there seeming perfectly ok and then you notice that she is staring off into space and her expression kind of changes a bit. Erika and I will ask her if she is ok and sometimes she says, "yea just staring" and Erika and I will look at each other and just know that there is more going on in her little mind than we can fathom.

Other times we have seen her staring like that and when we ask her if she is ok she says that she doesn't know and the tears start to well up in her eyes. Suddenly she is crying and all we can do is take her in our arms and hold her as tight as we can to let her know that she is ok and that everything will be ok.

Man being a parent is hard. It is full of joy, full of pain, full of tears, and full of laughs.

Knowing that she has these moments where she just gets overwhelmed makes knowing that I don't always take the tantrums in the best way even more frustrating. It is a guilt that I place on myself unnecessarily. To be honest I think that frustration is probably also a bit of me being overwhelmed by it. Don't quote me on that because I won't admit it again. But honestly, it's just hard not to be.

Erika and I have been doing a great job at building our faith and praying every day. I know that it isn't for everyone and someday I may reach readers who don't have the same beliefs that I do and that is ok, matter of fact I hope I reach people who don't believe because that would just be awesome to share with them as well as the people who believe. But praying every day and these frustrations, guilt, and worry at His feet have been so very uplifting and has lightened the burden of this storm.

That is just a small glimpse of the ups and down this journey may bring. There is so much more. Like the fear our daughter gets every time she has to be de-accessed. Mostly because she doesn't like the adhesive bandages being removed, who does right? There is so much more to tell, like the fear of letting her do anything or be around anyone. That's a big one.

I want so much for her to do normal kid things. I want her to be able to run around, I want her to go play chase with her friends. It is hard to find the balance, especially at this age. As we all know a lot of parents have a hard time keeping their kids home when they are sick. I can't tell you how many times we have gone places and there are kids who are hacking like they got the bronchitis. Scares me half to death because I know that those germs could do far more damage to her than they are to the kid who has them. So it's hard to let her go and play. What if she trips and falls and hits the port connected to her heart? These are the things we have to worry about.

Last night we went to prayer night at our church. We prayed for a lot of people and there are probably more that we still need to pray for. But last night there were only 4 other kids in her age group. She has been so excited to see other kids and get to run around with them at the church. So last night we let her go sit with them and talk and then when it was time to go to the prayer portion of the night she was upset because she didn't want to leave her friends. Once we found out there were only four other kids we decided maybe it would be ok for her to go to the room to play with them while we went in to pray.

Oh, the joy in her eyes as I told her she was allowed to go play with her friends. It couldn't be matched by much else. As I heard the words, "Really? Thank you daddy!" come out of her mouth there was much joy in my heart but also a subtle sadness. It's a sadness to know that we have had to keep her from playing with other kids, she doesn't know what it's like to just run around and play. She was diagnosed two days after her fourth birthday. Before that there was covid. This poor kid has never gotten to just be a normal kid who gets to run around and play with other kids. So getting to see her play and have fun with other kids just makes our hearts melt.

For those that are in tears right now, I am with you.

But this is what it is like. This is the fear, stress, and worry that we face every day until this storm is over. This is why it is important that we find others to talk to who have been through this. From a Dad's perspective, it can be hard. We don't like to talk about our feelings. Because of that, there aren't a lot of groups or support for Dad's going through this. Both people that I have spoken to this week have agreed that there isn't a lot of support out there. That's a big reason why StrodeDad came to life. So it is nice to share with them and see their perspective on what they have gone through and are going through.

I asked permission to share this blog link. Sean has graciously allowed me to do so. Sean's son Dominic ended his battle but Sean still shares each week. I share because it's good to see other people's stories. It is important for us to raise awareness and to do that the best way is to see it firsthand from people who are living through it and after it. As a matter of fact, Sean actually mentioned in this week's entry that he has noticed that there aren't as many views on his page.

He states, "I see the hits on this blog basically down to zero and realize many folks have moved on from his story. I suppose they've moved on from blogs in general too but don't think that's the main cause."

Well, I will continue to be a hit on his blog because it is nice to read another person's thoughts and feelings on the matter. I hope that my blog will never get to that point but I know inevitably that is probably the case, when that happens maybe I'll start a podcast. But for now, it is just nice to write. So please take a look at Sean's page so that you can see from his perspective as well.

http://dominicaml.blogspot.com/

I've also gotten to talk to Derek this week. His family is currently experiencing the ups and downs of childhood cancer. His daughter has a different form of cancer than Adelines which comes with different ups and downs. He has given me permission to share their group page on FaceBook. I add this in the hopes that it will bring awareness to their story as well. The more we share each other's stories the more awareness we can raise. Not just that the more hope and support we can give each other. So please take a look at their page as well.

https://www.facebook.com/KindnessForKins/

I've learned that each of our journeys is different in its own way. But while they are different we share that we are men, we share that we are fathers, and we share what that means when your child has cancer.

So a special thanks to Derek and Sean for allowing me to include them in this week's entry. Thank you to you as my readers for taking the time to read and I hope you continue to come back for future entries. Until next time...