Friday, January 27, 2012

In the car on the way to preschool this morning, Autumn had a moment to play with my phone right after we dropped off her sisters Sage and Lindsey at their school, the big one.  “Can we call Lucas’ mom please” she begged. “Why” I asked. “Well, I think he is my, you know, boyfriend..he, he, he!” she giggled for a good long while then asked, “Can we?, I really want a playdate”. I let her know that I didn’t have his phone number, but that when we arrived at school, we could surely ask his mom. What happened next? She simply began dialing a number and then said, “Oh, I wonder if they will speak Spanish or English, I wonder if this will be Lucas?”. I said, “Who are you calling?” She replied, “I think it’s Lucas, but I’m not sure, I just dialed a number.” I really think she believes that if she just hit a few numbers that soon enough she would get him or someone we knew. I think the world of children is so small, that they cannot fathom that there is SO much going on in this world, so many people and other kids and grandmothers and grandfathers and aunts and uncles and friends out there. They know who they know and cannot imagine it is any bigger than that. So yes, of course, one should be able to dial any number in the phone and find someone to talk to!

Another great day, a beautiful day along the coast of California, I don’t think we could live anywhere else (but I’d love to travel everywhere!).

“From now on I am going to call grandpa, “Buttercup” and Nanie, “Flowerhead”. Wow, that is too funny and something I just couldn’t pass up! Those were Autumn’s last words before she fell fast asleep…I’m not sure her grandparent’s will approve, but is sure was cute!

Wednesday, January 25, 2012

It felt wonderful yet strange today to call the nurses in Santa Barbara. I had to ask them about Autumn’s next appointment for her first post-chemo scan. Thankfully, there is no rush, she isn’t even on the books which means we are free for another 2 weeks! What an amazing feeling, how free I feel, I can hardly imagine what Autumn must think. Although she hasn’t said much about any of it, I am sure she is ready for her hair to grow back! She runs around the house all day long with her various beautiful princess dresses (my favorite being one that we found at Goodwill that looks like a little bride’s gown) and her “Rapunzel hair” which could be made from just about anything from a ribbon to a piece of material that can stick to her head with tape or more ribbon, anything goes! We have had our share of wigs here and there, but she never, ever wants anything to do with them. She may rarely try one on for a split second, but then off it goes. Ahhh…I will relish in these moments of peace and tranquility and appreciate them evermore!

Tuesday, January 24, 2012
“How can he peel a banana?” Autumn woke up this morning and asked me, as if she had been thinking of this all night long, pondering the particulars in her sleep. Her little mind just goes, and I love where it lands, what unique perspective she has and what she brings into this world, into my life! I am so lucky to have her!! “He is the most amazing man ever!” she declared. She is referring to the man who was born without any legs or arms, Mr Vujicic, a hero of hers and most likely the most amazing person alive, and there’s no hiding that from this little inquisitive girl. We have seen a few videos of his, so I did my best to imagine how he could peel a banana, perhaps with his mouth? He does have one smaller foot that really helps him in all sorts of tricky situations. His home is modified to suit his needs and he can do everything anyone else can, but he struggled a lot before he decided life was worth living and he was going to make the best of it. My god he has, and how many people he has inspired along the way! I hope Autumn has the chance to meet him someday 

Saturday, January 21, 2012

The familiar thick, pink liquid sat next to her cup of juice table this morning. “Do I have to take bactrim again?” she pleaded. She has a way of playing with the long teaspoon in which it is administered. Somedays we all chant, “Go Autumn, Go Autumn…” over and over again to make her feel special! Autumn has had to take bactrim every Saturday and Sunday for the past year and she simply cannot stand the taste. I tried it once (as did the rest of the family) and it didn’t seem so terrible to me, but nothing ever is when it isn’t obligatory. The antibiotic is a necessary precaution to her well being and we have to continue with its implementation for the next 3 months, then perhaps never again!

I can’t help but be haunted by the ugly thought that somehow Autumn could ever be in harms’ way again. If my mind goes there, even for a millisecond, I can freak out at the possibility. I hate that about our minds, it would be so wonderful to just shut them off sometimes, or at least mute them to the point of indistinguishable. Autumn has been such a trooper, she has gone through so much and she is now a healthy, happy little five year old girl, it is a wonderful thought and I love for my mind to remember this, to remember now, to remember the present moment. She has had a marvelous weekend so far playing with some of her favorite friends like Kiki and Scarlett who have been there for her every step of the way and for that I am so grateful!

Wednesday, January 18, 2012

Preschool is an amazing place; I think it is something that I have taken for granted over the past 6 years while all three of my girls have been crossing that plate into kindergarten and beyond. The teachers Autumn has had (as well as Sage and Lindsey) are so incredibly patience and supportive and loving and have endless energy to spend with the kids. On occasion I will spend a moment in the class with Autumn just to observe the manner in which her teacher leads the kids from one project to another, from playtime to work time, or out of a potential argument into something more creative. This morning, Autumn found herself struggling with a fake mandarin she had accidently lodged in a plastic teapot while attempting to create a tea party for her friends. Her teacher noticed her frustration and simply stated “well, now you know that things of those sizes should not be places inside our teapots at school.” It was a great learning moment and although Autumn was a bit embarrassed, she learned a lesson and no one was upset or mad. Foolishness can overtake a parent’s desire to make a child feel terrible for doing something wrong, but often a kid is really just trying to figure out this crazy world we live in and when they are not given the proper direction and love they need, it can make for a very frustrated and confused adult.

I loved the lady we met at Starbucks today. While she was diligently working on her computer, Autumn suddenly decided she just wanted to be right next to her. She picked up her drink (a green tea frap of course!) and a host of other things she had at the table we had been occupying. When she found herself at her new location, she kept wiggling her butt and dancing around and laughing in front of this lady, she was in a fabulous mood! The woman kindly kept looking in our direction and after awhile said, “I wish I could have as much fun as you are having today, but I have work to do.” She wasn’t upset, but her point was well taken.

“I think if I have all of the energy in the world, I can run as fast as a cheetah!” – Autumn 5

Life is short.

Monday, January 16, 2012

“Look mommy, it’s my hair” Autumn shouted as she bounced out of bed this morning. “Her hair?” I thought, she must have had a dream and an image of long hair was still lingering in her head. “It’s over there, hanging on the corner of the bed, just next to a big soft pillow her sister uses to block out sunlight”. I was able to see what had her so excited, it was a long beige headband that Sage had made for her this weekend and she was happy to see it this morning, delighted that it was the first thing her sweet brown eyes had had the pleasure to detect. I thought she might run over and put it on, instead she just allowed it to hang there as another memory that will surely one day join many others in a big box that I can imagine will be stored for future recall when necessary. I envision Autumn in her twenties looking into this box of belongings that were part of her life as a young girl. What will she be thinking, what memories will she even maintain after so many years, will it help in any way?

This past week has been nothing less than blissful. It is almost impossible to imagine that Autumn has made it this far so gracefully. It is even more amazing to think that we have no scheduled trips to SB anytime soon, not for another month I cannot tell you how free that makes me feel, I can only imagine it from her perspective! The oncologist mentioned that this time period can be much more difficult than active chemotherapy because during that time something is being done, cancer is being treated and there is a sense of control. Human beings don’t work very well in a state of groundlessness and I have been no exception. Kids seem to handle this state much better than their older (and supposedly “wiser”) counterparts which makes this situation a whole lot easier to deal with.

This week Autumn is going to try swim lessons since she loves to swim but hasn’t quite made it across the pool without holding on. She has been asking about them for sometime as summer draws ever closer, I want to make it a priority for her. I am so looking forward to the possibilities of this coming year, with the perspective of 2011, it should be easy to appreciate even the smallest of miracles!

Monday, January 9, 2012

Today was the first day in a long time that life felt “normal” if it can ever be described by any of us that way. It was a Monday unlike any I have had in a long time. I feel as though this year will bring lots of new beginnings, in so many ways. Grandpa John, Uncle Craig, Dan, Grandma Marji and Grandpa Frank were all staying at the Marriott in SLO and we were able to join them this morning for a great swim and a delicious breakfast before we had to go to school, a perfect start to any day!

Yesterday almost felt like a marvelous dream with so many people joining us to celebrate Autumn’s transition into a much anticipated cancer-free time. There was a hint of the “Wizard of Oz” in the air in every direction as I saw so many friendly, loving faces of people that have cared so much for a little girl who they may have met once or known her entire life. She bounced and bounced in the Tangled House and joyfully ran throughout the exhibits at the Exploration Station with a big, huge, happy smile on her face, it was glorious and more than I could have ever asked for. “How could one kid have so much energy?” was the prevailing question of the day. “She was back to where she wanted to be”, commented one person, it just felt right to see her there, almost like none of it had ever happened.

I want to thank everyone for everything that you have done for Autumn and all of us this past year. We were so happy to see you all there yesterday! Autumn has opened most of her gifts (we try to spread it out over a few days!) and I am happy to announce that we were able to purchase the toy car she really wanted, hooray!

We have our first post-chemo scans in about a month. I will be nervous but very hopeful that we have killed anything that may ever decide to come creeping back into her petite, vulnerable yet tenacious body. For now, we are living in the present for as far as any of us know, it is all we have, and I am thankful to be right here.

Sunday, January 8, 2012

What a wonderful day!! We have hopefully come to the end of this road, turned over a new leaf, and begun a new journey, HOORAY!!!!

Thank you everyone for all that you have done to help us along this incredible journey!

Thursday, January 5, 2012

Yesterday Autumn and I visited our favorite coffee shop in town. As usual, the two corner window hide-outs were taken and Autumn decided she was going to ask the young lady currently occupying her favorite spot if she could join in. I love how bold she has become. The girl graciously allowed us to sit with her and we began another fun journey. Autumn had so many stories she wanted to share with her and the two of them chatted for a long time, perhaps almost an hour. Towards the end of their conversation, Autumn brought up the movie “Soul Surfer” and told this girl just how much she liked the movie and how scary it was that the girl lost her arm to a shark. Autumn has had a crazy fascination with that movie ever since she first saw it, she has talked about losing an arm and what that means and how frightening sharks can be. I have explained to her that there are about 350 species of sharks and only about 7 of them are actually harmful, but none of that matters, it only takes one! The movie is powerful and perhaps a bit much for a little one, but after everything she has had to tolerate in her five years of life, it seemed appropriate.

After allowing her to talk for some time, this girl in the coffee shop picked up the book she was reading and showed Autumn a photo of the girl Autumn had been describing! I love how connected we all are, perhaps less than 6 degrees if we had time to investigate each other’s connections. This particular book was about an Australian man named Nick Vujicic, who was born without any arms or legs. His story is simply inspiring and motivating. Over the course of his life, he has learned to do just about everything including scuba diving, golfing and surfing which he had learned from Bethany, the girl who had lost her arm to a shark. Autumn spent a long time looking at those pictures of Nick Vujicic, baby photos and beyond, she had so many questions.

I found this link:

There are photos and videos of this man’s life, they are worth watching.

We had to spend most of the day at the hospital today…Autumn was in need of a blood transfusion. We met a sweet little girl who had been there for 10 days due to a burst appendix. She spoke only Spanish and it motivated the hell out of Autumn to speak as much Spanish as she could, it was adorable! They worked on arts and crafts for hours, it was more like preschool than anything and I was thankful. Autumn is always so full of energy after blood transfusions; at 9:30pm, she is still awake, yikes!

Wednesday, January 4, 2012

I felt the tears form and surface at the corners of my eyes, as if every emotion I have held back in the past 10 months were contained in that one tiny space. Autumn had just completed her last round of chemo, and it was thankfully a very “light” one, so quick in fact that it hardly seemed as though anything happened. Emotions are bizarre; humans seem to have this uncanny ability to be strong when we need to be, especially when the focus in on your child. I cannot describe how I have felt over the past 10 months, some days I felt just fine while others were quite difficult. There are so many ways one’s brain can react to trauma, so many stories it can create because our minds have a hard time shutting off.

I remember the time Autumn and I were driving down to Santa Barbara early in the morning some months ago and I had to stop to put numbing cream on her port. She was so bummed that we were going to do this AGAIN that she began to cry in sadness and frustration. All I could do was to tell her I was so sorry she had to be the one to go through this and that I would take her place if there was any way. I turned in my seat and cried more than I ever have in my life, I just couldn’t stop the tears because I felt so much pain and anger and confusion and helplessness at the situation and life altogether.

A friend whose daughter also had Wilm’s told me that the day would come when all of this would end, because nothing ever lasts forever. If yesterday was in fact that day, I am forever grateful!

Autumn loves Chinese food, so we located a delicious restaurant close to the clinic and feasted in honor of this great day! Uncle Adam, Auntie Alma, Camila, Nanie, Gramps, Uncle Bob, Janie Pie, Jeff, the girls and I were celebrating a day to remember for many years to come. One of the female waitresses sung Happy Birthday to Autumn in Mandarin while Autumn buried her little head in embarrassment, but she loved the attention, the gifts and the cake.

Today is Autumn’s 5th birthday and what a better gift to receive?? I am looking into 2012 with beautiful thoughts and happiness and peace for this little girl who has endured so much in one year. I am thinking of her sisters who have had to take a tough back seat to their sister’s illness which as anyone can imagine, is never very easy.

There has been so much love from our family, friends and this community which has made this journey a whole lot more painless to navigate. I cannot imagine going at this alone, it would never work.

Autumn returned to preschool today and loved every moment of it. When I came to pick her up at noon, she was still running at lightning speed having a blast with her little friends, it was wonderful to see. It was the first day that felt like a day before any of this ever happened, it was serene.

Monday, January 2, 2012

“Mommy, did you know that the number 3 looks just like a butt?” Autumn’s insight is fun and silly and downright hilarious! Kids DO say the darndest things, don’t they?

I can hardly believe that we are finally at the finish line, at least this phase (perhaps forever!!) of Autumn’s treatment! Tomorrow is a BIG day for her and all the family is going to make it to the clinic to wish her a happy new year and a happy birthday and a WONDERFUL end-of-chemo celebration!!!!! It has been a long road, one that was filled with so many unknowns and frustrations, but we have made it for now, she has gone the distance. We will be thinking of all of you and everything that you have done for all of us over this past year. We are so very grateful for each and every one of you in our lives, without your support we could not have made it this far, it would have been impossible.