Checking in…

It looks like I’m becoming a “blog once a quarter” type of person. Sometimes I feel guilty about that because I genuinely do want to keep everyone updated on Ben. But honestly? I’m tired. Plus, Ben and Madeline have both recently told me that I talk about Ben’s illness way too much. I guess I took that to heart and backed off quite a bit. I mean, I want to be an embarrassing mom in a fun way, not the “holy crap, here comes the lady who can’t shut up about her son’s terminal cancer.”

Since joining social media in 2009, I have fallen in love with learning about your lives. I felt comfortable communicating with anyone and everyone because writing was my preferred mode of corresponding. I didn’t have to sort through my social anxiety in order to interact, which was completely refreshing. And when Ben did relapse that summer of 2009, Facebook got me through the long days at the hospital. I could slip into your world for a couple of minutes… virtually celebrate milestones with you, applaud your kiddo for acing a test, enjoy your life as if I were right beside you… it was a form of sweet relief. Thank you for that. Plus, social media allowed me to cultivate a following of amazing supporters from around the world who have nothing but love for my Ben. So, while you might not want to STAY in our world, you could visit whenever you wanted to.

I’ve received a couple of messages lately from people checking in, worried about us. This is certainly not my intention to cause concern, but the truth is we’re kinda in neuroblastoma purgatory. Each doctor’s visit determines whether we get to hang out in NED heaven or if we’re being thrown back into treatment hell. Right now, nothing is going on. We have a lot of downtime. I wish I could say that we’re doing a lot of productive stuff with that time, but we’re not. Matt goes to work. Maddy goes to school. Ben sometimes works with his teacher. I generally get lost in the sub-world of Pinterest, but sometimes I try out self-tanners. And cry. Of course, I try not to do the self-tanning thing and cry in the same day.

I’ve learned that having something to look forward to takes some of the pressure off the landmines otherwise threatening our environment. For instance, Maddy recently turned 13. She wanted to have a murder mystery party so I myopically dove in… oblivious to everything else in my life. I viewed her birthday party as the pinnacle of my parenting… throw her a great party and I’ll win the “Best Mom EVER!!!” award. I really needed that kind of win. And while I’m confident that the party was a success (she gave it an 11 out of a score of 10,) now I’m back in that sea-ravaged boat asking “What now?” What if I get started on a new project and learn during next week’s scans that radiation didn’t do what we’ve hoped? And then that leads me to just sit here paralyzed… occasionally crying and pinning things on Pinterest that I’ll probably never make. I feel that continuing my search for the perfect self-tanner for my fair complexion is the safest activity for now.

I haven’t completely lost hope, but I’m also not turning a blind eye to what simply is. I know that after my last blog post there was concern that I sounded like I was throwing in the towel and conceding defeat to Ben’s opponent. I’ll admit that it is becoming more and more challenging to accept this bullshit that my son continues to bravely face. I try not to let those cracks show when I’m with him but he knows. He knows. The streaks in my self-tanner leaves no room for doubt.

Everything hinges on what this next set of scans report… I am hopeful.

But I am terrified. And the terror part is getting harder to suppress.

 

11 thoughts on “Checking in…”

  1. 1) As your fellow fair-skinned human, if you find a self-tanner that doesn’t turn you orange let me know.
    2) If after using this miraculous self-tanner does it smell to the point that you smell yourself in your sleep or no?
    3) How about a walk? Or a coffee? Or if you are done with testing self-tanners we can hit Nordstrom Rack and try on various versions of Spanx.

  2. As I told your mom years ago when you lived in Columbus, you are a gifted writer. You have been given a difficult road to travel. Most would have been totally broken by now, but not you. You are stronger than you know. You are an exceptional person.

    Thank you for allowing us to make this journey with you and Ben. You are never alone. You and your family are always in my prayers.

  3. My daughter made many a sign that is perfect for you too….. Be gentle with yourself, you’re doing the best you can.

    Hugs
    Another NBA mom

  4. Well, I think your amazing! Your a class act and that’s it! We all love you and continue to pray for you all. Hugs

  5. You and Ben and family are in my thoughts and prayers. Just know you are a special person to handle the ongoing challenge of Ben’s illness. Keep faith in your heart. God is the only one that will guide you with my lovexo

  6. Hang In there. Your so ‘s health has been such a big part of your life for so long that you don’t know what to do with your down time. You have permission to be a “crazy” mom. Your kids love you no matter what ❤️

  7. We were in the same boat with my son. It was a good thing that his older brother let school and stayed at home with him. He has paralyisis and other problem. I worked in halftime. It was good to live a little normality. When home we always wathched youtube videos, and played Travin online. Every night tried to search about anything what can cure my son. It lasted six years. I feel with you, sad that can’t do nothing to make it easier. But the love between my son and me was the greatest I know on earth. Never will come again. Much happiness. Anna

  8. You are an amazingly strong family and much admired. Your writing is always informative, witty and heartfelt. You definitely should be a journalist and/or authoring a book. Ben and your beautiful family are always in my heart, thoughts and prayers. I know what it’s like to get through tough times but remember, there’s always a rainbow.

  9. You are such a priceless gemstone, my friend. Ben is lucky to have such a wonderful mother! My Heart goes out to you and your beautiful Babes! Know that you’re always in my thoughts and prayers… ❤️❤️❤️

  10. I am reading more and more about successes with immuno therapies. I hope you are checking these out. I continue to pray for some option for treating Ben’s cancer that will bring more long term cure for him.

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