Author: stein28

Today was a great day. Still didn’t get a ton of sleep and woke up early, but wide awake and refreshed. And ravenous. Had a little bit of drama over cheerios and cookies with the hotel staff but came out unscathed in a great mood, ready for the day. We headed out on foot from Elkridge to the Kids Trek where I was surprised by my mom and aunt! It was great to have them there, sharing this experience with us. At the end of the trek Ari’s Bears was there with bears to stuff for all the participants; kids, parents, and the entire trek team and support staff. It meant a lot to be able to share Ari’s Bears and more importantly Ariella with the team. The most special moment was also the most unexpected. We FaceTimed with the kid of the day and learned she had actually received an Ari’s Bear from Ariella herself. I’m convinced that things like this just don’t happen, there are no coincidences, and though wrought with emotion, it was such a special moment.

Following the Kids Trek we walked along the B&A trail for a couple miles, for the transition to the bike. There were about 11 miles left on the trail for the bike ride and I really just wanted to run. I was itching to just open up, take off, and fly. I could feel it in my entire body (either that or the slice of pizza and half a chicken sandwich I had just eaten). It takes some time to transition to the bikes so while I knew I wouldn’t be able to run the whole cycling distance, I figured I could get several miles in. I was going back and forth with David and some others, trying to figure out the logistics, when I was pretty much ordered to RUN!!!!!!, so run I did. And it was so great. Away from the cacophony (#word of the day) of the street on the trail I was able to run freely, with both joy and sorrow. I ran just about 6 miles and it was just what I needed (thank you Sharon for yelling in my ear and picking me up). When I was finished my run I felt refreshed and rejuvenated and ready for the next leg. We headed on foot into Annapolis where we got on a nice but not ostentatious (#word of the day) boat for a ride across the bay. Hard to believe that just a few days ago we were in the mountatins, and now we made it to the Eastern Shore. The day ended on Kent Island with a beautiful sunset, fitting for the day.

The miracle of the day was the weather. The forecast was not looking promising but we could not have asked for a better day. It began overcast with a breeze and while it rained during the kids trek, it didn’t last for long and it felt good. When we made it into Annapolis the sun was coming out, making for a beautiful boat ride. Another short storm on the eastern shore caused just a minor delay, and led into a beautiful evening on the water.

When planning and anticipating this trek I could not imagine that I would have felt so good after so many days. But I do. I feel good, I feel strong, and I’m looking forward to tomorrow.

The sleeplessness continues and this morning I think I actually dozed off while leaning against a wall. I also dozed off multiple other times throughout the day. Not sure why I’m not sleeping but it’s beginning to catch up with me. I also had no appetite this morning which is definitely not at all like me. Other than that I’m feeling good, physically. Mentally and emotionally, I feel battered and bruised. The lack of sleep certainly doesn’t help and though I know after all the torment I ultimately made the right decision, I absolutely hate that I am not on a bike right now with the others. If I could walk those miles, I would. I have been relishing the physicality of this challenge. I didn’t realize how much I needed it. I feel raw and spent and emotionally wrung out but also cleansed, like I’m ridding my mind of the invasive thoughts and demons, even if just temporarily. When I was running up those hills, the harder I ran and the worst I felt physically, the better I felt emotionally. Maybe I need the pain to quiet my mind of everything else and erase the emotional pain. Maybe I’m just trying to make myself completely numb. Maybe I just feel like I need to punish myself. Even after living this so-called life for over 4 years I just don’t know. What I do know is that I have to do whatever I can to survive.

Today’s trek was from Frederick to Sykesville, through Ellicott City and Patapsco State Park, finishing at the hotel in Elkridge. I spent my day with the media crew. I enjoyed my time with them very much but it also wasn’t where I really wanted to be. I guess I haven’t quite come to terms with not fully completing the trek. I’m proud of what I have done and proud of what I will continue to do but still. It’s not what I envisioned. All that to say, I was pretty cantankerous (#word of the day) for a good part of the day. I was tired, I was missing out, and I was still feeling pretty emotional. And I continued to have no appetite. Just wasn’t feeling the vibe.

My mood improved as the day went on and I actually ended up having a blast with the media team. And while I did once again have some sadness with missing out, I enjoyed being able to see and cheer on the cyclists in various locations. And I got to better know the other members of the team that I hadn’t yet spent much time with. I laughed a lot which is always good for the soul.

I’m still not myself though. My appetite continues to be nonexistent which worries me for tomorrow. I’m forcing myself to get down what I can but I know it hasn’t been enough. I don’t feel poorly otherwise but this is affecting my mental state. I have been feeling great so far and I want to begin tomorrow feeling strong and ready.

Another night of little sleep, another early morning. Today was the perfect day to face my fear. The day was to start with a flat, 10-mile bike ride on a paved trail. This was the time to get some biking miles in. The BWI loop is more difficult and I survived that so this would be a piece of cake (TM Kenny). The air was cool but my anxiety was high. My hands were shaking but this was not something I hadn’t done before. Just a flat, 10 miles. This trek isn’t a finding myself journey where I discover who I really am or some such shit, but I do expect to learn some things about myself. Today I learned, or really confirmed, what I already suspected. I am most definitely not a bicycle person. I started off shaky but as the ride went on felt a little better, a little more confident, though by no means fully comfortable. But anyway, I had excellent support and scintillating conversation making the miles fly by (or not because I really could not wait to get off the bike). I finished without incident (other than losing a few years of my life riding over roots, dodging branches, passing other cyclists and the random truck coming from the opposite direction to remove a downed tree, and riding between gates) and immediately composed the Bike For Sale ad in my head. I do think I would have done better on a hybrid bike, something with bigger tires, a bit more stable but what’s done is done. Biking is not my thing and that’s okay. I’ve come to terms with the fact that I will not be riding with the others. Well, maybe not. It’s hard not to be disappointed, I wanted to complete all the miles, but I was always apprehensive about the bike and I tried. At least I can say I tried. Sometimes that just has to be enough.

Next up was the walking portion of the day. And for a good while I took the time to just walk by myself. I quieted my mind, took in my surroundings, and was just present. Focusing on my breath, the sounds of my feet connecting with the ground, noticing the wind kissing my skin, grounding myself in the moment. I often ran hard uphill today, running emotionally, running for those who can’t, always running for Ariella. And once again I soared down the downhills. It was cathartic and exactly what I needed. This is a walking journey but running truly is my happy place. The discomfort coupled with the exhilaration, the release of just everything, the letting go.

The trek didn’t end there. There was some more biking (not for me) ending up in the town of Frederick where we had a crowd waiting, including the child being honored for that day. I have met and followed so many children with cancer who have died. My heart breaks each time and meeting new children with cancer guts me. I have such a wide range of emotions that threaten to completely overwhelm me. Sadness that there is yet another child with cancer. There are just too many. Happiness that at least for now the child is surviving. Fear of getting to know another child that may die. And always jealousy. Jealous that those families still have their child. And then there is the guilt for feeling jealous. I want more than anything for no more children to die from cancer. But I also want my child to not have died.

In a poignant moment we were introduced to another family whose daughter had died. Well David had actually met the father before but I had not met either parent. No hesitation. We hugged, we held each other, we cried, our burden lifted a little while we took on the burden of another grieving parent. No words necessary. Just being together in that moment. Unfortunately we all know. Without explanation. We know each others’ pain and heartache. We know what it’s like to be suffocated by grief, and we know what it’s like to have your family shattered, never to be fixed. We know what it’s like to have a hole that can never be filled and we know the feelings of the guilt and the what ifs and to not be able to have a happy moment that’s not tainted with sadness. And it’s a bittersweet comfort to be with someone else who knows. Because we don’t want anyone else to be going through this horror but it helps to know we are not alone.

I’m not sure how I feel about the day overall. A lot of conflicting emotions. Proud I got on the bike but disappointed that I didn’t increase my comfort and will now miss a lot of miles. The walk actually was great. I needed that freeing time to myself and then, when I was ready, the time conversing with kindred souls was also much needed. I’ll just leave it that today was therapeutic.

My plan is to write each night while it’s fresh in my mind but it’s still kind of all a blur. But I will try. For those that don’t know I am stepping pretty far out of my comfort zone this week and participating in a a 7-day, 329 mile trek across Maryland. The trek is hiking and biking starting from the top of Wisp Mountain in Deep Creek Lake and ends in the Atlantic Ocean in Ocean City, MD. The trek raises funds for Just in Power Kids, a childhood cancer non-profit (https://justinpowerkids.org/ check them out). Ariella was honored on the trek twice and after she passed David and I participated in their Kids Trek Day. It obviously has a lot of meaning for us.

Now that you’re caught up, let’s start with Day 0. Actually, let’s back up to when we agreed to even do this thing, back in May. Justin Berk, the one who began it all, has been trying to get David and I trek for a few years now. This year we happened to be free and had a conversation with Justin about the logistics. Before I could even process any of it or take any time to think about it David said and I quote, “I’m in!” Not to be outdone I of course had to agree on the spot so there it was. David and I just decided on purpose to put ourselves through who knows what 7-days straight. Maybe we were drinking at the time? Or maybe we just agreed so we could end the phone call (Justin can talk!) (Justin, just teasing, we love you!). Anyway for some strange reason we thought it was a good idea and now here we are.

After we agreed to this we really didn’t do much else about it. We talked about it a lot, said we should probably start training, figure out what we needed, etc. but didn’t take much action until probably later than we should have. I wasn’t too worried, I’m on my feet a lot with marathon training and even though walking is different I was sure I could handle it. Well the walking part anyway. The biking? A whole other story. I was not one of those kids always on my bike and while I would ride with Ariella or David from time to time, I was never super comfortable on my bike (and I don’t just mean those awful seats) and most definitely not a confident rider. But I was going to do this thing. So I dragged out my bike, dusted it off, clipped in, and fell over (this was my first time clipping in, well other than the Peloton and that probably doesn’t count since it would be pretty challenging to fall off of that). To be fair the clip was too tight so I couldn’t release my foot and once I fixed that, I was off and riding down my street. I reached the end, stopped, clipped out, turned, and then started again. Because turning is hard. So that’s how it went for a bit. Up and down my street, taking super wide turns or stopping altogether to turn. Straight and flat, easy peasy. So what’s the next logical step? A 30-mile group training ride on the road, right? Not right. But I did it anyway. Well mostly. Partly? I was fortunate to have a very patient person riding with me, guiding me through changing the gears and such yet was white knuckling it the entire time. We decided to turn around sooner than the others and it was going fine other than the pure terror rushing through my body especially when flying (riding the breaks) downhill towards a curve. But I made it through incident free. Until I reached the top of a hill and fell over. I have no idea what happened. One second I was up after cresting a mountain (mountain, hill, whatever) and the next I was on the ground. Fortunately we were offered help and I did not have to climb back up on that bicycle that day. I did ride 17 miles so not too shabby. But. You fall of a bike you get back on. Two days later I went to a 10.6 mile paved bike loop to practice. And hated every. single. second of it. But not to be deterred I did it again the following week and hated more than every single second because this time the path was pretty crowded and I was just waiting for disaster (meanwhile, we took Ariella there to bike when she was 8 and she rode the whole loop with no problem). Finished free of casualties but could have used a Xanax (or 5). This did not bode well for me. But I was out of time. Trek was fast approaching and it was what it was.

Ok, back to Day 0. Friday August 5. We met the other trekkers (there are 8 of us doing the full trek) and support staff and caravanned to Deep Creek Lake, with several stops and pictures, and pictures, and pictures, and doughnuts, along the way. We started to get to know the people we would be spending the week with and I started to realize these total strangers are likely going to see me in some of my worst moments. This trek was not going to be easy and I knew my emotions would be all over the place. Can I let myself be so vulnerable to these people I know nothing about? We are all going through it. Feels quite intimate actually. To choose to do something so challenging, that I have never done before, with a group of strangers. But here I was, no turning back now. I was in it. But I still had not made a decision about the biking.

And now here we are, finally, to Day 1 (this post probably feels as long as day 1 did for me, it’s taken a long time to get to this point). We started at the top of Wisp and did a live video with Tyler (the person being honored today) and his family. We all shared our why. And while David and I were sharing our story, Tyler came over to us and just embraced us in such a warm, comforting hug. He held us tight. He told us we could wipe our tears on his shirt. And Tyler is why. And Ariella is why. And all those kids are why. I was talking with Justin on trek about how I don’t like to be told I’m so strong for going on. Because what choice to I have? But Tyler? Tyler is strong. Tyler, with terminal cancer, comforted us. That is strength. Ariella was strong. Not because she had cancer. But because she continued to live her best life while she had cancer. That is strength. I was relying on her strength to get me through this. I was taking this challenge on by choice. She didn’t have a choice and what we were about to go through would not come close to comparing to what she went through. I channeled her strength all day.

After videos and photos our trek officially began. We walked 27.68 miles in 6:40, up and down the steep, mountainous roads. We saw donkeys, a horse, a whole herd of cows who ran as a group toward the fence of their pasture to check us out, and sunflowers. (I usually like to share pictures on my blogs but it’s not always easy on this site so I’ll add them after the last day or you can see them on Facebook AriellaStrong – Ari’s Bears or instagram aris_bears) We had an amazing support team with water and food and cold towels. All we had to do was walk. I reluctantly decided early on that I was not going to ride my bike for sure the first few days. The roads were steep with lots of curves and heavy traffic. I was anxious even thinking about it. As disappointed as I am that I am missing some miles of the trek, I am even more terrified and that’s not a good place to be when on 2 wheels. Once I made that decision I felt some relief even though there is also some frustration with myself that I can’t get past my fear.

So back to the trek. I’m not sure how to explain. Justin asked several times if I was having fun. Fun wasn’t the right word. There were many fun moments, like running over a bridge to lunch, soaring down some of the hills (while the trek is mostly walking I ran up quite a few hills because it’s easier than power walking and took advantage of the downhills to get some speed as well), and getting to know my fellow trekkers, but overall I’m not sure the word I’m looking for. There were times we all were walking close together, times when we were more spread out. We frequently walked with different team members and sometimes we walked by ourselves. I enjoyed the conversation very much but I also relished the moments to myself. It was quite meditative and here I was in this wide, open space where I could just be me. The terrain was not easy, so many long, steep hills, up and down so much of the time I was just concentrating on my breathing, putting one foot in front of the other, not thinking about anything else (except possibly dodging the cars that seem to enjoy flying on the road). And that’s really all this is. One foot in front of the other, one mile, one step at a time. I felt good at the end of the walk. And even better knowing I would not have to get on a bike. And riding in a van along the 15 mile-route the bikers took confirmed that I made the right choice. It wasn’t too long before they were finished the ride and we all gathered once again to head to the hotel to eat.

I’m still processing this and there is so much more I could write but it’s late and we do it all again in the morning. I’m sure I’ll run the range of emotions all week but my fellow trekkers are no longer strangers. We are doing this separately (because none of us will have the same experience) but together. I can’t wait to see what tomorrow brings.

February. So many anniversaries. Not good ones. Diagnosis day. Bone marrow transplant. The day my father died. The last time Ariella ever danced. I try not to think about it but my body always remembers. I’m in a funk, more so than usual. I must be good at pretending because most don’t seem to notice. The memories swirl around me. The fear and the hope. The loss and the optimism. February changed my life multiple times. February 3. The day we were told definitively that Ariella had cancer. I was sort of aware of the day somewhere in my conscience. I knew the day was approaching but it didn’t really register that day. But when I worked that evening signs from Ariella were abundant. “Fight Song” followed by two other songs that I always tie to Ariella and a customer named Ariel. It was then that it hit me that that was the day our lives truly had changed. From that point on there would always be a before and an after. We would never be truly carefree again. And then a couple years and few months later another before and after. February 25, the day my father died. February 26, Ariella’s bone marrow transplant. Supposed to be her cure but ended up being the cause of her death. February. Some times of the year are easier than others. February is up there with being the hardest time of year for me.

The other day I was working with a student in his classroom. The teacher had calming music playing in the background. The same exact music Ariella often played when she was in the hospital. I was immediately taken back to that hospital room in Sinai, in bed with Ariella, her starting the music as we laid down together to nap. Those days were so difficult and yet I also treasured them. As much as the hospital stays sucked, especially when Ariella felt bad, we also managed to find ways to have fun. And I got to spend so much time with Ariella. It was in those hospital rooms where Ariella showed cancer who was boss. Cancer did not stop her. It did not stop her laughter, it did not kill her spirit. Cancer magnified Ariella’s generosity, resilience, and spunk. It was in those rooms where Ariella shared her fears but also her optimism. She never thought she was going to be anything but okay. She never lost hope. It was in those rooms that Ariella had her head shaved and also in those rooms when Ariella was first brave enough to share a picture of herself without hair.

We got to know all the doctors, nurses, and other patients. Ari’s Bears was started at Sinai, by bringing bears with us to clinic visits and hospital stays. We had many, many meals there and enjoyed parties, events, and celebrations. We played games, made slime, read books together, watched TV, hung out in the playroom, did crafts. Many times she kicked David and me out of the room to hang out with her friends. During those days I never dreamed I would miss it but now I would give everything I have to go back there. To return to a place where I had hope, where I was sure everything was going to be all right in the end. To go to a time when Ariella was alive. Yes I miss those days. As hard as they were, especially for Ariella, she was still with us and we were whole.

Another day, another month, another year, the endless cycle continues. Somehow I made it through another holiday season. I survived being bombarded with questions about the holidays that I just didn’t know how to answer. I survived the social media feeds flooded with pictures of the unbroken families having another exciting and joyous holiday season. I survived the memories of our own special times, wishing more than anything I could go back there. The holidays don’t mean anything to me anymore. I ignore them as much as I can, making me once more an outsider looking in. There is no excitement or joy, no gift giving, no holiday outings. Just another day. And I’m so jealous and bitter at how cruelly my world has changed. Resentful that life can go on as normal for most, with the revelry and fun when I am grief stricken and heart broken. It has not gotten easier with time. I have just learned to live with the sadness. This was the 4th holiday season without Ariella. And it just gets harder. Our loss for us is everyday. But it’s no longer in the forefront of others’ minds. I got a lot of generic happy birthdays, happy holidays, Happy Chanukahs, Merry Christmases without thought about how I might have been feeling, how a thinking of you and I’m here if you need me might have been a better greeting, or offers to get a coffee, spend some time together. A holiday card with a thoughtful note added to it rather than the picture perfect family that’s sent to everyone. It’s expected. People move on. They have their own lives to live. But my loss still hurts as much as it did from day one and I’m not going to lie, it is hurtful when it’s not acknowledged. I’m slowly digging my way out of this pit. I’m learning to live again rather than just to exist in survival mode. I’m taking steps to find different meaning in my life, or at least keep me busy. But. The pain will never go away. I will always be broken. From now until the end of time any joy or excitement I feel will be tinged with sadness. My best, most happiest days are truly behind me and it is just so scary to know I have decades ahead of me to feel such heartache.

I mentioned taking steps to find purpose once again. I have gotten my certification to be a run coach and I begin working part time at Charm City Run, a local run specialty store. I really enjoy working at the store. It gets me out more than I would, and talking to people. I get to talk about something I love with others who feel the same. And for several hours I’m mostly distracted from life. But then I want to share all the things I’m doing with Ariella. Enjoyment and sorrow, side by side.

The calendar has flipped again. It always seemed arbitrary to me, to make a fresh start just because one year rolls over to the next. Why wait? But at the same time, these days the turn of the page hits pretty hard. Because it’s yet another year that Ariella was not alive for. I don’t see new beginnings or a chance to better myself. I see moving further and further away from Ariella’s life, from our life, from our best days as a happy, complete family of 3. I don’t want a new beginning. I desperately want to go back. The memories are becoming less vivid and I can’t “hear” her voice as clearly. I am grateful that smartphones are a thing because I have many more pictures and videos than I otherwise would have had (this is your reminder to take the pictures, be in the pictures, but also put the phone down and just “be” with your loved ones). When memories are all we have to hold onto, they are more precious. Unexpected memories shared by others are even better. Recently a friend’s son, who was a bit younger than Ariella, shared a memory with me. He said that one of his favorite memories was how Ariella helped him with his Legos, and that she was great at it. This wasn’t something I necessarily forgot, but certainly not a memory at the forefront of my mind. But once he mentioned it I was brought back to a moment in the living room of our friend’s house, with Ariella sitting on the floor patiently helping him to build his Lego set. For him it was just a nice memory. For me it was someone remembering my child, remembering her impact on him, and just talking about her. She existed. He didn’t notice the tears in my eyes when he shared this moment, he immediately went onto something else as children do. But he remembered. And he said her name. And he wasn’t uncomfortable or worried talking about her would make me sad. He was just remembering a time he had with her. At the time it wasn’t anything extraordinary but that’s the thing about life. It isn’t the extraordinary that makes life special, it’s the small, every day moments that don’t seem to mean much at the time but are really everything that matters. Of course I miss the milestones. Getting her license, the graduations, new jobs, marriage, kids. But I miss even more those unremarkable days. Helping with homework, hearing about her day, watching TV together, going shopping, just existing in the same space. All the things that make a life. I may be slowly emerging from the blackness and taking steps to fill the space, but Ariella’s absence is always present and the emptiness still surrounds me. The positive of a new year? It’s one year closer to being reunited with my girl.