I’ve steamed about 25,000 lattes since I last wrote something on the blog, or written anywhere else for that matter. Sometimes I feel like I haven’t opened my mouth in ages. I feel like the tin man. The inertia of working/coming home/sleeping/and repeating…has made time slip away in silence.
But rest assured readers, all of this time, I too have been here. I too have feared what would happen and I’ve imagined the future and lamented the past. I’ve done it in blog-o-silence, but I’ve done it all the same.
The other night Brandi and I agreed that just being present hasn’t felt the same, and that I should again stretch my typing fingers out to give a small contribution to this thing that was initially a group effort. It’s probably just once a week, and only time permitting.
So--what’s happened since March? Well, after Scarlett’s tumor was removed, looking ahead to the painful endurance of chemo, we realized that we couldn’t keep doing all of this without money, and that I had to go back to work. Yuck.
What’s work like? I steam milk. I pour coffee. I’m polite to customers. I clean bathrooms. I wash windows. I count money. I mop floors. I stock pastries…other three word sentences like this...
I’m the one who goes to work. Brandi’s full time job is Scarlett’s care. That’s the story you’ve read about, and that’s what this blog is about. The parts in between is what I do every day.
Work takes up a huge chunk of time, and because of that, a strange thing started happening a few months back. I started missing things. It was just a few appointments here and there, and that was rare at first, but it became increasingly common over time . I started getting overwhelmed with the schedule of appointments and assessments and therapies, and it just got too difficult to manage requesting days off. Eventually we found ourselves in a place where it was common for me miss things. It began to feel normal.
Now I miss a lot of things. In fact, there are people who only know Brandi, because she’s the only one they’ve dealt with. There are departments and services that only Brandi manages. Social workers ask for Brandi, not ‘the parents of Scarlett Wecks’, over the phone. I give the phone over. When I do go to appointments, who am I? I’m the male-half of the relationship. I’m that less eloquent, less informed, less authoritative supporting player. I’m less. In their eyes, I’m less. In the context of Scarlett’s care, I’m less. I’m the one who their eyes pass by before they reach Brandi’s. In the story of our day, I am often missing.
And I don’t know things, too. Difficult to imagine, but I’ve lost track of which person deals with which service. The major people I still know and see: our oncology PNP, our neurosurgeon, and others…but a lot of people I don’t know, and I can’t keep it straight. If I come home at 8PM, there’s only so much I can retain while we eat dinner and put Scarlett to bed. I rely on dosage notes on the sides of Scarlett’s medications now when I give her the evening meds she takes with her chemo and overnight feeds. I ask how much she’s eaten, because I don’t know. It’s a struggle I am working hard to overcome.
It’s been a strange thing. Working while Brandi takes care of Scarlett has made me an outsider in my own life.
Of course I’m not without a life. For over a year I have been trying to launch a small business. Every now and then I write a little still. I’m still on the job hunt. And the little things in my days still stick in my memory. Conversations and interesting things all still happen to me.
But when family and friends talk to us, there is little of that to include. We are a story about Scarlett and her care. My portion of this is the money it takes to make it happen. So when they turn to me, they say one thing:
“How’s the job hunt going?”
It is, after all, the only relevant thing to ask me. If Brandi and I are the narrative of Scarlett’s care, then that is what I am reduced to. When people think of me, it’s about a job they think I might be good at. Little else matters. I don’t sew bibs or make appointments or fight with social workers. I make money, and the more of it the better. My interests and ambitions are private ones because they aren’t relevant, and frankly they’re second place to anything to do with Scarlett. All of my experiences become trivial, because they don’t contribute to the overarching story of Scarlett’s care
This is partially why a lot has happened, but I’ve written so little. It's impossible to even frame my life here.
I'm hopeful that things won't always be this way. There’s a lot I thought I’d be doing with my life by this point, and I look into the future and dream of days when the pieces of my life will become relevant and important again. Brandi and I both do. Until then, here’s to latte number 25,001!
Steaming lattes (of which I steamed my first of the other day!!) is just a means to an end.
I experienced a slightly similar feeling when I went back to work a couple months ago as well. At Dr's visits, etc. I defer to my husband since he is the one who is home with the kids. It makes me feel awkward like I should know these simple answers, but you are still her father so I wouldn't feel bad about it...
Is there a way that you could be more involved? I know Scarlett's care requires a complicated schedule. Maybe a digital calender (like Google calendar) would be a good way to share everything? That way, you can even look at it on your phone (if you have a smart phone?).
Maybe even that way, just knowing whats going on, you'd feel a tiny bit better about steaming lattes while your daughter goes to PT.
I look forward to reading more of your insights.. good luck with the job hunt!!
As always, you all are in my prayers!!
@Ashley - We would not be able to function WITHOUT Google calendar and our iPhones right now! We use it to schedule upcoming appointments, as well as keep track of past ones for reimbursement, taxes and insurance.
We all know you're more than a latte steamer Chris. You're the rock of support that helps Brandi keep it all together. They couldn't do it without you.
It's hard to deal with chronic medical issues (especially with a child with a brain tumor). I've dealt with years of surgeries, doctor's visits, medication, therapy, etc. My life revolved around the medical community and it felt like we would never get on the other side of it. It's almost like you are just "white knuckling" life for awhile - holding on for dear life. But eventually the appointments will get fewer and farther apart. It may take years but eventually you will come out on the other side. And you can smile at Brandi and Scarlett and know that without the collective effort you wouldn't be there. You will be an entirely different person - stronger for sure!
Sending you all my best!
Chris, my heart goes out to you. In way, what you are feeling is something every working parent struggles with but the whole thing is made so much more intense by the unique challenges your family is going through. I know that my husband and I both feel that we are missing out on too much of our sons day. Once we drop him off and head to work we don't really know anything about what he ate, saw, did and learned. It's painful! That said, it doesn't begin to compare to how you must feel, because you are missing out on very important things. I am truly sorry to hear that you feel your importance in the eyes of the doctors has been minimized. You ARE very important. Hang in there and good luck.
As one of the "taking care of the kids therapy appointments" moms, I can say that even though my hubby can't keep straight what appointments are happening on what day, I appreciate every day that I don't have to go it alone -- I really do value immensely that I don't have to worry about the income. (Or fold all the laundry, or wash all the dishes, or do all the bedtime routines by myself.)
I know its hard on him, he feels diconnected sometimes, but in this situation you just have to divide and conquer. There is too much for just one person to do, so the jobs need to be delegated one way or the other.
It gets easier when they are older, since they don't change so much as they do whey they are so young like Scarlett is now. At this age, 3 months later you seem to have a different kid!
It will settle down, and your contribution of drudgery time at work is super important. GO DAD!
I've been reading and following your blog since day 1. It's the only one I follow. Your post brought tears to my eyes. You matter so much but you matter in a way that might feel less important and I totally understand that. Try to remember that each hour you spend steaming damn stupid lattes you are making money to help support your beautiful and incredible family. Each and every one of those stupid overpriced lattes gets your closer to what you need, want and deserve.
I spent a lot of time a few years ago involved heavily in yoga. I learned so much but the biggest life lesson I learned out of the practice was to surrender. Surrender to my body, surrender to my current circumstances, surrender to life. Not to give up but to surrender. To let go of this idea that things HAVE to be a certain way. To surrender to what is in order to move forward.
Both you and Brandi have done this countless times over the past few months. You have to accept what you have in order to move past it, improve it, change it. Once you fully embrace those lattes the universe (or God, or whatever you choose to believe) will deliver your next step.
I wish you all the best. I am constantly sending healing energy and love your way. I live way out here in CT but if we ever make it over to the west coast I dream of meeting all of you and watching both our Oct 2010 babies play together.
I bet this is hard for you! Almost every time i read this blog i cry lol. I can not imagine being in your situation. Its must be hard for both you and Brandi for different reasons.
All i can do is pray for your family as many do. But in the end after all this stress of medications, doctors visits and PT you will have a wonderful child who will some day i hope be healthy and always happy.
Keep your head up being a daddy is a very important job and you are doing exactly what your family needs you to do right now!
You are NEVER less than equal in the grand scheme of things.
Though I do not know what it would be like to have a child with cancer and the efforts that accompany that, I do know what it's like to be the working parent. Given the early diagnosis of Scarlett's cancer, you only had 2 months of being the parent of a healthy baby. Oddly, your sentiments are similar to that of a working parent with a perfectly healthy child. If I don't ask my husband what my daughter's day was I wouldn't know what to feed her and when. Also, once we have children, it seems as though our only value as people is really as parents, our lives revolve around them no matter what. I'm not suggesting that I feel it on the same level as you, but the nature of the beast is the same, that beast being parenthood and more specifically, working and parenting.
I commend you for your hard work, especially in light of the fact that it is boring and mundane. THAT is more trying than working a job that FEELS so much more important than it is. There is something to be said for being the Provider and in your situation, it means alot. I pray that you find a job that pays better and one that you will find more fulfilling. You're a good dad and husband.
You are such a great writer! More posts from you sound great to me.
dad keep your head up. You have an important role as well. Not just bread winner. You are DAD. Both Brandi and Scarlett are the most importnant pieces of your life and you are doing what needs to be done to keep everyone afloat.
Well conveyed Dad....it sucks. You should definitely check in on the blog, seems like a good place to get some thoughts worked out. I am going to ask my husband to read your entry. He works all the time too, 6 days a week...so I can be at home with our daughter. I worry that he is stressed...and we are not managing anything close to all of the appointments and day to day important health issues that your family has. Something more challenging will come along when the time is right...maybe you are meant to go thru this job, to prepare you for something bigger. You whole family is strong. Thank you for sharing your story so honestly. Love from AUstin, Tx. --Irene
I think my hubby feels the same as you do right now. Too bad the two of you could not talk (but men don't talk to each other... LOL)
I want to reach out and give you a big hug. Things will get better, you are doing the best you possibly can right now. We all know that. Keep your head up.
Christina & Kaitlyn
ya and David ;)
There's not a thing wrong with making coffee for a living. =) You aren't just the "other parent"....you are Scarlett's Daddy. And that's something that no one can take away from you and something that little Miss will always know and cherish. You are making it possible for her and Brandi to go see all the life saving Doctors and get all those expensive meds....and not to try to take away from all that Brandi does cuz Sister, you rock too!! =) Parenting is an unequal minefield under the best circumstances and I know that when Scarlett is older she will think of you both as her heroes. Brandi and Chris, keep up the love and amazing work and know that you both are amazing and wonderful!
Post a Comment