This break has been wonderful.
I have heard extra laughs, given an abundance of hugs, and done an assortment of crafts.
I have also wiped sister induced tears, done more laundry than usual, cleaned more messes, and been slightly more tired.
We had my parents, brothers and SIL and their family, come over on Thursday. We cooked turkey and I potato peeled off a chunk of my finger. We drank wine and ate appetizers and laughed and played with the kids. The cousins ran around outside while it wasn't raining and I ran around trying capture the day in spurts of 2 or 3 photos at a time.
I am ready to go back to our weekly routine, though. One week off seems like forever when it is raining outside all of the time - and even when it's not, it is sub 40 degrees (hey, that is cold here!). Reese has asked about her friends and teachers all week and is ready to return to her classes and daily schedule. We are ready for packing lunches, going to dance, and getting to bed earlier because there's no sleeping in. Only one week of a break, but it always helps me remember to be grateful for our regular day to day - and how blessed we are to have our day to day filled with such amazing people.
I have so much to be thankful for that it is hard for me to start in the middle of it all. I am thankful for the health of my sweet babies, for my family who I love so dearly. I am thankful to be able to provide for them daily. I am thankful for my wrecked heart who longs to do so many things outside of my comfort zone. I am thankful for the pain and sadness that has led me to realize how blessed we truly are.
We go into this next month with our elf on the shelf, our lists for santa being written, our tree up, and our days packed - but remember to stop for a second and look around. It is easy to get wrapped up in it all at this time of year - the stress and the hustle, but all you need to be wrapped up in is each other.
Sunday, November 29, 2015
This break has been wonderful.
Friday, October 23, 2015
My [friend's] kid just got diagnosed with a brain tumor....
I sadly, so terribly unfortunately, get that message about 1x a month. Can their friend message me? Anything I can say to them? What should they do? More often than that, I get messages that their friend's children were diagnosed with another form of cancer and they want to know what to bring to the hospital.
These messages are never a bother. They are so welcomed. I consider the fact that they came to me such a compliment of sorts. It isn't a compliment that I necessarily want to receive, as I wish I knew nothing of the subject, but it is one that I take, anyway. The people who message trust me enough with their hearts and emotions to invite me in to their private lives.
I say a lot of the same things to friend's of the one dx. I list PJs and blankets. I say to bring them food or give them a visa GC. I remind them to DO things instead of ASK what they need - a maid, a child pick up, a hug. But it is when they add me to a message with their friend - or when I finally say "hi" to a new mother whose world has been thrown upside-down, that I can see who I was. I can see how far I have come in many ways - and also how time does not change things.
I notice so quickly how these mothers adapt. Three years ago, I was that mother who felt as if they were in some sort of cage where no one could see them; no one could understand. Everyone just looked in with this face of "oh. oh dear." Tears in their eyes from absolutely sympathy and love, but they were still on the outside. I had a few people around that understood and really that is all that I needed - someone to say "yes. I know." And now I am that person. The blessing of it all is watching how they grow and change. Scared mothers who then throw medical dialogue around, as if it is their native language. They list of procedures and talk about medicines like a nurse studying for a test, but they are moms like me.
I have had one minute conversations with people who had a question about chemo or a test. I have talked to people for hours just about nurses or hospitals or "what would you do?" All of this goes both ways, as we need each other.
...But I also have spoken with mothers into the darkness of late nights about their child, only to, months later, pray into a puddle of tears as their child takes their final breath. I am so grateful that they let me into their lives for that tiny sliver of time - and even more grateful when they let me continue to stay in it with them.
I talk to friends of those mothers, who just want to understand. Sometimes they come asking medical questions that I try to answer as best as I can. Sometimes they feel desperate to help them - and the only thing I can do is say to love them. That is often the hardest thing to explain.
All of this reminds me how much our journey is about others. We are not in a cage, alone, we are part of a community where we all need someone, all on different levels. I may go into scans or chemo differently than I did winter 2012, but that does not let me forget how it felt. Those feelings never go away. I don't mesh with everyone perfectly, as we are not all on the same road. Sometimes when people post things on pages, I don't understand those feelings at all. Some people are angrier, some are more hostile, some are off treatment to likely never look back. But they all have "people", too.
I was taught, early on, through other mothers' kindness and love, that it is important to take our own struggle and turn it into strength for someone else.
Thank you for letting me be that person for some of your loved ones - even if just for a moment of time. Because no matter how much time goes by, I will never forget this face days before diagnosis. I will never forget the fear I felt not knowing what was going on with my child. I will never forget crying until I fell asleep in the ICU. I hope I never forget. Those feelings are what propel me to try harder when I feel as if I am on empty, appreciate the tantrums as well as the smiles, and enjoy every day - even the terrible ones that I superficially want to end.
(3 years ago, yesterday)
Thursday, October 15, 2015
Scanxiety is a little different now.
Reese's MRI is in 2 weeks - Tuesday the 27th. We go to the pavilion at Children's this time because they are doing something at the main radiation spot. I already am annoyed that things are "different" than usual, but for MRIs at the pavilion, I can be with her till she goes to sleep. That being said, she doesn't care about that because she loves the gas mask. Also, the last time that I did an MRI at the pavilion was December 2012, before her 2nd surgery.
I don't really worry about the MRI the same way as I used to. I have heard it all, now, and am vaguely prepared for most of it. I have spent almost 3 years now educating myself on protocols, mutations, surgeries, laser options, timing and speed of growth, and so forth. I have spent months hearing "shrinkage". I have heard "stable" for a long time. I have heard "growth" as well as "looks stable ish" throughout the past year. Really, I just want to hear what they have to say. I am almost counting down the days to the MRI because I want to know what the plan is. The plan may be as it has since January. I hope so, anyway. But if it is not, we will move on - and Reese has been practicing swallowing pills in case we move to dabrafanib.
Yesterday, she lost her first tooth. Whoa...
We had all been wiggling this tooth for weeks. I was in disbelief, honestly, that she was old enough to lose her first tooth. I am downright giggly to tell her doctors. I don't know if they thought she'd make it to the age where she could lose a tooth, 3 years ago. But last night the tooth fairy came and this morning was magical. Then I got an email from her teacher on how the entire class was excited for her... the whole day melted my heart. Reese told me that one of her friends chose her for "eat lunch with a friend" and I cried. I legit sat there and cried happy tears that she is so loved.
Things are so normal and not normal at the same time. This is how I always thought my life would be - taking kids to school and preschool and another kid at home. Going to dance and soccer and meetings and girls night out. But, then on mondays/tuesdays, depending on the week, we have to stop that normal life and head to chemo. I am still that mom that talks about things that makes everyone halt for a second to hear "oh, sorry, my daughter has a brain tumor" because otherwise the story doesn't make sense. All of this is okay. I understand that the journey we are on is years long. Years past today. That is okay, too.
As we approach 3 years, I think about how far we, as a family, have come... grown... sticked together. All of it is okay.