We celebrated three years remission from leukemia yesterday and tomorrow you will visit your oncologist. Sandwiched between the two days is a trip to get labs drawn. These are regularly scheduled labs to check your TSH (thyroid) and CBC (complete blood count). The latter of the two bringing the most anxiety for obvious reasons. And right now your mama is nervous.
I see you every day and I know you are fine. But knowing what I know about leukemia and your history with it keeps the fear fresh in my mind until I can actually see your lab results on paper. I have fooled myself into thinking that taking you to get lab work done would get easier the further we got out from treatment, but the reality is that it is not easy. Ever. There is no simple, painless, straightforward way to go about drawing blood from a small child.
My heart has raced all morning and my nerves are shot. Experiences such as labs open the door to days passed. It is as though we are suddenly catapulted into unknown again, while at the mercy of things I still lack control over; and hoping with every ounce of me that we can ease our minds once more.
You will put on a brave face because that is what I will ask of you. Holding you tight as you cry, I will tell you how proud I am of you and how much I love you. When you are not looking, tears will run down my cheek but I will remind myself to wipe them away before you notice.
While the anxiety attempts its takeover, I think back to yesterday and how quickly three years have gone by.
How can I feed the fear when you have reached this incredible milestone?
Today when I told you I was taking you to get blood drawn from your arm, I told you it was okay to be scared and that I would be there. You grabbed my face with your little hands and said, “It’s okay Mom. I can do this! Okay Mom? I can do this! I will be so brave.”
From a once very sick little girl to a now strong and healthy big girl, you have really grown. You have a t-shirt that say “This Girl Won’t Stop.” There is a reason it is my favorite, and it isn’t because of the gold glitter font. Although that certainly helps.
Three years of growth, change and endless opportunities to live like a kid again. The reward of remission far exceeds the angst I may occasionally feel. Most importantly, you are happy.
I turned 30 a few weeks ago. For years I can recall family and friends wallow in sadness about leaving their twenties behind; about how everything would so different. Gone would be the days of pulling all-nighters and slacking off. Although that is exactly what I did the night before my birthday, and I paid for it many days over.
It seemed that turning 30 was the official mark of adulthood; no more screwing around. Then there was this lingering expectation that people around this new age would have their lives in order at that point. I was genuinely puzzled by this. Who made these rules? No, seriously who? I have a few questions. I expected to feel something similar as my twenties came to a close. But I didn’t, which makes sense because I have never mourned the passing of another year.
I was excited for my birthday, and I would tell me friends that “I am going to own my thirties. They’re going to be some of my best years.” They would look at me with disgust for my eagerness to reach a new decade, wondering how I could feel excited about getting older. For the past ten years, my life shifted and transitioned more than I was ever prepared for. There are many things from my twenties that I am not proud of, but there were also invaluable experiences that I am so grateful for. Within those years were monumental, life-changing moments that shaped me into the woman and person I am today; the good, the bad and everything that falls between.
The months leading up to my thirtieth were very challenging. During those months, I spent a lot of time focusing on where I was at in my life and what I wanted to doing that I already was not. I was facing big, ugly stuff and overcoming endless hurdles. Challenges that forced me to dissect many smaller facets of my life. Which led me to this blog, this place I hold so dear to my heart, and how it became one of the main areas I devoted my mind to during that time. And it is funny because I spent basically zero time blogging while this was all going on. I’ll explain.
Since I started blogging, I have genuinely enjoyed it. It has been the gateway to my scattered thoughts and has healed my worried heart many times. Blogging was something I never thought I would do. Hell, I was not even real positive about what a blog really was until I had Tessa. But here I am, nearly six years later, pouring my heart into my little piece of internet real estate.
If you have been a dedicated reader here, you know that much of what I write about or to is Tessa; the motivation behind the blog. I had not experienced the lows of writing until I learned that my blog was ticking some people off.
Hmmm…maybe I am a real writer after all…
Things were said and assumed about me and my character; but it wasn’t until my thoughts and words were being used against me or shared negatively in other blogger groups or posts as examples of how not to write or rather what not to write about surfaced, that I stopped writing. Fear of opening my heart, sharing too much, saying the wrong things and having my words policed in other forums held me back. I retrieved from blogging and withheld my desire to journal until I could figure out what I was ever really trying to say in all of this writing.
I know that it is impossible to please everyone and that is not the reason I write in the first place. I am a big fan of a little idea I like to call don’t like it, don’t read it. However, I would be lying if I said it didn’t make me think about things. So bravo haters, you win.
I had a lot of “come-to-Jesus” talks with myself. Perhaps it is not my place to share things about my daughter’s life with the rest of the world the way I have been doing it. Does this make me a bad person? Does this mean my character is flawed? I don’t really think so. As a mom, I was simply reacting to what my heart felt like it needed and wanted to do. And selfishly, I needed lots of healing and blogging provided that for me. Especially before, during and after my daughter’s battle with leukemia.
As my blog grew, I caught myself writing just for the sake of writing; hoping to meet arbitrary deadlines. Most of the time I was trying to promote advocacy and inclusion for my daughter, but I walked straight into seriously unfamiliar and rocky territory. All I wanted to do was shout out to the world, “Love my kid and accept her,” but–if I am being honest–the world doesn’t owe me or her that. Clearly my intentions have been misunderstood a time or two. In advocating for her, I somehow put boundaries up around her without knowing it. We do not need to prove anything about her, nor does she of herself.
I guess maybe it took confronting myself through ugly times to reevaluate the end goal here. In these revelations, I have decided to shift the tone of my blog. Down syndrome and cancer have held a huge place in our lives, but they aren’t our entire lives. There is so much more to me than those two things. It took a lot for me to realize that I can write about other things, too. For instance, I can go on about how I shamelessly pin things about raising chickens on Pinterest (there is some interesting stuff out there by the way). Or I can talk about the exhaustion of being a working mom or about health and fitness. I can spill for days on the perks of country living or my daily struggle with anxiety and PTSD. And that is exactly what I plan to do. Who knows…maybe a new blog name in the future.
There will still be days where I talk about extra chromosomes and cancer and how they have impacted my life, but I will not apologize for my personal feelings or experiences regarding either because I do think it is okay to speak for ourselves and share our stories.
The day before my birthday, I walked to the Georgia Aquarium in downtown Atlanta while on a work trip. I paid $43 (ouch) to walk around the aquarium by myself and watch the animals do their thing, trying to get plenty of pictures to take back to my girls. There were at least twenty different elementary schools there with their students, and I looked like genuine creep taking a selfie with a penguin…but YOLO!
While I was there, I sat down in a massive viewing room. I thought a lot about the direction I hoped my blog would take and what I truly wanted to write about in the future as I stared into the big blue wall of water. I also thought a lot about the direction I hoped my life would take, but fully accepting that my plan is already in place. I am really just along for the ride. The rest of the aquarium was rather noisy, but I sat among the crowd in total tranquility as an enormous feeling of gratitude washed over me.
Turning thirty showed me that I do not exist because of the approval of others. It opened my eyes to the idea that I can feed my soul in more ways than one, and that the most meaningful relationships I will have in my life are happening right now. Most importantly, it provided me with fresh perspective and the chance to wipe my slate clean once more. Cheers 30. Let’s do this!