Friday, May 22, 2009


Nearly a year into the journey, I was talking to Krista about a mother who was watching her daughter die. It was for me such a spiritually leveling thought that I could hardly breathe. Krista mentioned that often what happens to people at that stage of the journey is that they ‘have moments’ with their children that will sustain them after they have died. At the time, I remember thinking, “All she has is moments?” It was a heart-breaking thought to know that life was whittling away to just a few precious moments and I found myself both angered and awed by that idea.

Moments have become something I have considered a great deal since that December 2008 conversation with Krista. Moments have indeed become the very defining elements that offer meaning at any given time throughout my day. It’s tempting to give consideration to only those moments that feel good. I have learned, however, that even the hard moments offer invaluable lessons. So, I have been focused on creating a life that is filled with moments as well as moments that are filled with life.

I’ve been going through pictures and it seems so strange to have been savagely turned upside down in the course of a day, followed by weeks of trying to find footing in a new reality all the while having moments of real joy, beauty and bliss.

These moments are indeed sustaining. I look at these pictures and they are in a setting that is overflowing with sterility, stress, death, fear, and despair and despite all that, the spirit of delight shines through. I remember wondering if I was really feeling happy since I could barely feel in general. I thought perhaps I was going through the motions of exuberance in order to keep the kids’ spirits up. I look at these pictures now and realize that I had moments of true happiness with my family despite everything. These moments are cherished. They are, afterall, all we have and all that matters.

Aria playing with a beloved puppet that Krista brought for her.

Reo showing off his missing teeth!

Aria with 2 of her best friends: Amy and Bethany.

Aria receiving her FIRST dose of chemotherapy (vincristine). She was blissfully unaware and perfectly content watching a movie.

Doc and Aria having a playful snuggle.

We're HOME!!!

Tragedy redefines life in the most brutal of ways. We are ripped of the belief that we have control, that life has an order, and that fairness exists in some capacity. When fate comes knocking with a menacing fist, suddenly we learn, we see and we understand. This aspect of the journey was a difficult one for me and I’m still challenged by it.

One the interesting elements in this wicked shift from what I thought was real to what was surreal to what was a new reality was how easy it could be while swirling around what was enormously punishing. I had a robotic motion during those days of endless learning that it seemed almost effortless There was a strange sense of comfort taking place and I owe a great deal of that security to the myriad of professionals, who descended upon us. We were getting to know nurses very well. Dr. Angela, was becoming more and more familiar and more trusted. I finally learned her name and began calling her Dr. Trobaugh. Krista, the child life specialist assigned to Aria, visited every day and was a wonderful sounding board. There was a genuine gentility and compassion coming from nearly everyone we encountered that suddenly the thought of going home was terrifying. Being home meant doing everything on our own. It meant outpatient visits that were completely foreign. It meant rather than observing and watching this new life unfold, we were actually going to have to live it. It meant encountering other families and their kids. It meant that it was real! Leaving the hospital meant that now every aspect of our lives was going to be touched by cancer and that was a big bitter pill to swallow. Still, I was aware that leaving the hospital meant wellness to some degree and that was a mighty wind upon which to sail into this next chapter.

January 24, 2008
Subject We’re Home!!!!!

I want to thank you all once again for the wonderful emails, letters and presents! It is so humbling. I am also deeply grateful for all the amazing words of encouragement. So many have expressed their confidence in us and you have no idea how we draw strength from that in virtually everything we are doing and facing; not the least of which comes into play every time we draw the syringe full of more medicine for Aria, knowing it may make her feel like crap and at the same time is saving her life.

We arrived home yesterday. Doc was absolutely elated. I, on the other hand, was so stressed and anxious that I could barely think straight. Being home for me is incredibly daunting. The outpatient life is going to be so challenging in many ways. We go into clinic at least once if not twice a week for the next 4 -8 weeks. Most of the appointments are for chemo and checking labs and so forth, but 'procedure' days are big. Tomorrow is one of those days. She is scheduled for another spinal tap and bone marrow biopsy at 12 30 and we are to check in at 9 am! You got it, 3 1/2 hours EARLY. This is because they need to check all her lab work and then wait to get the results, which will ultimately determine if she needs platelets or a blood transfusion to sustain her through the procedure. Then we wait some more. Then she's prepped for the procedure, followed by more waiting and so the day goes. I expect to be home by 5 pm. Reo has to be dropped off at school and picked up and then entertained for the afternoon. Yes, I will be trying to solicit some help but not for tomorrow. I want him to be able to experience this kind of day first hand with us so he'll know what to expect later. We are sticking together as a family through this as much as possible. Still, it’s a juggle. Luckily, Doc is off work and will be completely available here. So tomorrow, I’ll drop off Reo, take Doc, Aria, Rianna and myself to the clinic. We check in and start feeling our way around this new outpatient world. I'll leave shortly after 10am to head back to the school with Rianna to get Reo and then we'll head back to the clinic to be with Aria before she heads into her procedure. There is always the chance that they could take her early, but there's just as much of a chance that her procedure will be bumped until later. Key word here: FLEXIBILITY! The results of the procedure will dictate what happens the following Friday and if we need to come in more than once.

It is intimidating to me because up to this point Doc has been with me, there will be plenty of times when it won't be possible and I'll be on my own. Yes, I'll be able to ask some friends and I hope they'll be available but people have their own lives to worry about so I feel it is in my best interest to muscle up and face this as if I'll be on my own.

The other thing that has me wildly anxious is the whole thought of Aria getting an infection/fever and me having to drop everything to rush her to the hospital. I've been given a specific temperature to watch for and if she reaches that point I've been encouraged to get her to the clinic within 30 minutes. Very emergency oriented, which is completely out of my comfort zone as it is for most people. I've also been warned of many other things to look out for and to call the clinic and be prepared to come in; bleeding, bruising, vomiting, lethargy, etc..etc.. I met a woman with a 3 year old with A.L.L who said during the first 6 months she had a hospital bag packed and ready to go in her car. Great idea and I'll be doing the same. It is a terrifying thought, but it is our reality and something we absolutely just have to count on. It feels like a ticking time bomb and like I said, I'm terribly anxious about it. I'm well aware that my anxiety is based on the unknown; the 'what-if' scenarios but there it is. I’m nervous. Once again, this is a conflict between what my mind knows and what my heart feels. I will be spending more time in reflection, so I can find some peace and gain some mindfulness. The first thing I'll do is pay more attention to my breathing. I just noticed that I'm not breathing mindfully but taking short shallow breaths. I also know that once I experience an outpatient appointment, get to know the staff and how things operate I'll feel better. Right now I have no experience and thus no confidence. I'll get there. Information and experience are key ingredients to the cessation of fear.

The other thing I need to do is face the obvious and that is that Aria is doing exceptionally well! We had an eight day hospital stay. Many kids find themselves in the hospital for the entire "induction" phase, which is the phase we are in now. It is the heavy hitting chemo with a 28 day 2 times a day dose of the steroid, which is nasty ugly. So far it has been ok, but I hear it gets really bad toward the end...grumpy, moody, nasty kids...breathe!!!! just breathe!!!!! Still, Aria has tolerated the chemo well as well as her other meds. She's needed very little pain medicine in the last 24 hours and has complained of her tummy "rumbling" and "feeling funny" for which we have given her an anti-nausea med. She has a great appetite, slept through the night last night, played in the snow today for 10 minutes, played and played. Her spirits haven't been this high since Christmas! It was wonderful. She is pale, though, very, very pale but really doing well. I am reminding myself as I write this to celebrate that. Those moments of today and to erase those moments that don't yet exist! ahhhhhhhhh breathe!!!!!!! She's totally prepared for tomorrow and knows that she'll go into the procedure room and have a nice dream. She's also beginning to wrap her head around the idea that her hair is going to fall out. We've been talking about it quite a bit. I think we're going to have some kind of hair cutting party next week. I was told to prepare her that she'll notice her hair falling out probably as early as this weekend! YIKES!!! I'm not completely ok with the idea to be perfectly honest but I'm open. At least, I'm getting that place of accepting the inevitable. She did mention to me this morning, "Mama, I just don't want my hair to fall out!" I told her, "Me either.. I don't want your hair to fall out but the good thing is that it will grow back and you can decide if you want long hair or short hair!" She smiled and shrugged her shoulders. We're facing that bridge and we'll cross it. I may have to create some kind of "Hair Fairy" that visits her in the night and brings special presents. I’m sure glitter will be involved. We'll see...

Reo is doing well. He lost his other front tooth this morning! VERY adorable. He keeps it so real and for that we are so grateful. In the hospital there was this amazing 'I Spy" display of all kinds of pirate things. Reo LOVED LOVED LOVED the fishing net of all things. Today I gave him a real fishing net to tell him just how proud we were of him. You would have thought I had captured the moon and handed it to him. He is such a sensitive little guy. "Look everyone! Look at my beautiful net! Oh, Mama...I just love you!" He said these things with his whole heart too. Rianna is Rianna...Can't say much more than that. She is so easy going but also has this baby orangutan thing going on. Ijust can't put her down and when I do she bends her legs up trying to wrap them around me. It is the cutest thing. She is also WAY into giving me hugs, which melts me every time!

On a much different note I had an observation today that was striking. I haven't prayed. Not once. Not even to light a candle. Not even tosend up a thought. Nothing...I'm amazed.

I want to be very clear that I don't hold God accountable for any of this. Some have shared their wonderment with me, "Why does God do these things?" at the same time they share with me the mystery of God's way that is inherent in the question. Biblical passages typically follow as some kind of "proof". Uncle Seamus, I think of you whenever I think of Proof and God in the same sentence. Makes me laugh! I've heard a lot lately that God does what He does and we don't understand it. Forgive me, but that thought has not resonated with me at all. I don't think God had any hand in this nor do I think God has had any hand in the process so far. Reo's teacher said, "Praise the Lord!" when I told her that Aria was responding so well. At the time it struck a nerve and bugged me to no end but it wasn't until the next day that I figured out why. As Aria was responding well, it never occurred to me to thank God, but instead to thank the miracle of modern medicine, as well as her amazing doctors! I feel completely indebted to them. I have not found myself bargaining with God saying things like, "God, if you spare Aria this pain and agony, I will......." It’s so weird. For me, God hasn't been in the picture at all. I don't blame Him for doing this and I don't praise Him for how things are working. I have viewed this experience as nothing more than the human experience. It is a part of being a human being. This isn't to say, however, that God doesn't exist for me but it has seriously put into question what that looks like. Mimi and Papa, (my parents) I have some guilt in admitting this but my understanding and relationship to Christianity is changing. Therefore, my view of God and what God is or isn't is also changing. This may not come as a surprise for it has been changing for the past 2 decades, but this experience has been the first real tangible examination of what God actually means to me. God has been very present in the way in which people have responded to us. That spirit, that generosity, that collective energy that forces people to connect and reflect. It is this LIFE energy that has been the most God-like for me. Do I have Faith in God's will? That is some question and the answer for me is that I have tremendous faith in Life. God is no longer this outsider looking in, this separate entity, a heavenly Father. God has become a tangible force that has connected me to Life and to all the goodness of Life because of the tremendous love people express and their shared desire to minimize suffering and maximize kindness, sincerity and truth. I am very grateful for your prayers and thoughts...I firmly believe it creates power that is beyond our understanding. Is this God? For some the answer is an unwavering , "yes" but for me, I'm very comfortable in my uncertainty for I know that whatever "it" is, it is good...

With that, I'll say goodnight and I'll let you know about the day tomorrow and all the incredible things we learned.
All my love, ~j

This photograph was taken with a cell phone in the car on the way home. Aria couldn't stand the sun in her face, which is why she's hiding under her hat!

This photograph was taken with Doc's cell phone in Aria's room the first morning of her being home. She had just woken up from a good night's sleep. I find this picture rather haunting in an exquisitely beautiful way.