I started a blog about the holidays that has been sitting, unfinished, for weeks. I love the holidays. Seriously, I absolutely LOVE them. I mean I am one of those people that gets annoyingly into them and has every Christmas channel marked on the radio so that I can listen to Christmas music ALL the time. We host Christmas Caroling parties, we go see lights, the whole experience. Chandler and I have developed many traditions over the years that center around the holidays, but that's not what's on my mind. Lately, my mind has been a whirlpool of emotions, ideas, and future plans, or really future question marks floating around, sometimes spiraling around my head and my heart.
I am writing this at 3 in the morning from Faith's hospital room on the first day of our last in-patient chemo round. It's another milestone, really. A pretty huge one at that! So long as we never need to say the "F" word again (fever, of course!), we will not be admitted back to the hospital until Faith is ready for her 2nd surgery. There is no future plan for that. It's all based on her growth. So, Kady, who is 3 years younger, is as tall as her big sister and weighs more than her. Faith hates that. She really hasn't grown at all throughout all of this. I'm sure she'll grow again, at least I hope so. We asked the surgeon to make her prosthetic purposely longer in hopes that she would, so she better grow soon. But the question is when and how much. We had a light bulb moment last week when someone mentioned that of course Faith isn't growing, her bones are too tired always trying to make blood cells after the chemo wipes them all out. Duh!!! So, it could be a year or more before I come back to the 7th floor. Naturally, I am elated about that, but, secretly, I am a smidge sad, too. Silly, if I think logically about it. I mean, who, in their right mind, wants to come to the hospital, put their whole life on hold for several days, laundry, groceries, chores, and focus 100% of their energy on their child?!? Well, when you put it that way....I will miss guiltlessly doing nothing, just hanging out watching movies, or playing games. I will miss our friends that we have made here. Jessica, the Child Life specialist, several of our favorite nurses, and who wouldn't miss the candy cart?!? But, I won't miss leaving Kady behind, or sleeping on a couch, or worse yet, a recliner, with scratchy, chemically smelling sheets. I won't miss taking Faith on crutches with an IV pole in tow to the bathroom every 2-3 hours and I really won't miss purposefully poisoning our child to the point of her getting sick.
We are so different now than we were in August. I think back to those first few days a lot now, especially that it's a new year and we are hitting these milestones. I replay scenes like the phone call that started with "I really hate to make these phone calls". If I remember too far into that day, I feel it all over again. My mom suggested when Faith was born that I mark important dates and milestones on the calendar that we keep in our kitchen. Chandler and I have done a good job with that. It's nice to look back on the previous year as we prepare for the next year and read over the events that have occurred. Chandler, Kady, Faith and I sat at the kitchen table together on New Year's Day and read over the notes that we had made on the calendar. It's funny how we allowed 2013 to be relevant only from August 12th on when, in reality, so much more had happened. One of the many holiday traditions that we have is a New Year's Day party with traditional black eyed peas, collard greens, and fried chicken, for good luck and prosperity in the new year. Some old friends of ours started it and we kept it going with a few twists of our own. This year, after looking over that calendar, we added a ritual that I hope we maintain forever. Each of us wrote down our thoughts about the outgoing year, including lessons learned, joys, milestones, events, but mainly, the parts we wanted to let go of and be done with. On another paper, we wrote down our hopes and goals for the new year. We gathered in a circle, my Oakland Street family, my immediate family, all the kids, and we shared the parts we wanted to share and we kept private the parts we didn't. Then, we burned 2013 and we let it go. We literally lit those papers on fire and we just said good-bye to it all, the whole year, the good and, more importantly, the not so good. We silently watched it all go up in flames. Then, we saved our jotted down hopes and dreams to be remembered and then burned next year.
I am writing this at 3 in the morning from Faith's hospital room on the first day of our last in-patient chemo round. It's another milestone, really. A pretty huge one at that! So long as we never need to say the "F" word again (fever, of course!), we will not be admitted back to the hospital until Faith is ready for her 2nd surgery. There is no future plan for that. It's all based on her growth. So, Kady, who is 3 years younger, is as tall as her big sister and weighs more than her. Faith hates that. She really hasn't grown at all throughout all of this. I'm sure she'll grow again, at least I hope so. We asked the surgeon to make her prosthetic purposely longer in hopes that she would, so she better grow soon. But the question is when and how much. We had a light bulb moment last week when someone mentioned that of course Faith isn't growing, her bones are too tired always trying to make blood cells after the chemo wipes them all out. Duh!!! So, it could be a year or more before I come back to the 7th floor. Naturally, I am elated about that, but, secretly, I am a smidge sad, too. Silly, if I think logically about it. I mean, who, in their right mind, wants to come to the hospital, put their whole life on hold for several days, laundry, groceries, chores, and focus 100% of their energy on their child?!? Well, when you put it that way....I will miss guiltlessly doing nothing, just hanging out watching movies, or playing games. I will miss our friends that we have made here. Jessica, the Child Life specialist, several of our favorite nurses, and who wouldn't miss the candy cart?!? But, I won't miss leaving Kady behind, or sleeping on a couch, or worse yet, a recliner, with scratchy, chemically smelling sheets. I won't miss taking Faith on crutches with an IV pole in tow to the bathroom every 2-3 hours and I really won't miss purposefully poisoning our child to the point of her getting sick.
We are so different now than we were in August. I think back to those first few days a lot now, especially that it's a new year and we are hitting these milestones. I replay scenes like the phone call that started with "I really hate to make these phone calls". If I remember too far into that day, I feel it all over again. My mom suggested when Faith was born that I mark important dates and milestones on the calendar that we keep in our kitchen. Chandler and I have done a good job with that. It's nice to look back on the previous year as we prepare for the next year and read over the events that have occurred. Chandler, Kady, Faith and I sat at the kitchen table together on New Year's Day and read over the notes that we had made on the calendar. It's funny how we allowed 2013 to be relevant only from August 12th on when, in reality, so much more had happened. One of the many holiday traditions that we have is a New Year's Day party with traditional black eyed peas, collard greens, and fried chicken, for good luck and prosperity in the new year. Some old friends of ours started it and we kept it going with a few twists of our own. This year, after looking over that calendar, we added a ritual that I hope we maintain forever. Each of us wrote down our thoughts about the outgoing year, including lessons learned, joys, milestones, events, but mainly, the parts we wanted to let go of and be done with. On another paper, we wrote down our hopes and goals for the new year. We gathered in a circle, my Oakland Street family, my immediate family, all the kids, and we shared the parts we wanted to share and we kept private the parts we didn't. Then, we burned 2013 and we let it go. We literally lit those papers on fire and we just said good-bye to it all, the whole year, the good and, more importantly, the not so good. We silently watched it all go up in flames. Then, we saved our jotted down hopes and dreams to be remembered and then burned next year.
I can't say as I'll miss 2013 all that much, but I have learned a lot, grown a lot, and as I said earlier, changed A LOT. I have said this before and I'll say it again at the risk of offending, that I don't believe that God gave Faith bone cancer to teach her a lesson, or really US a lesson. He didn't give it to her because she is strong enough to handle it. This whole thing, this whole "C" thing (I almost forgot, we can't say the word cancer per Faith), sometimes has me wondering what the heck it's all about, especially when I hear things like "God has a master plan" and "God chose Faith because....". I feel in my heart that this had to have just been a random fluke of nature. It just happened. Maybe I played a role by something I ate or drank or a cigarette I smoked (for the record, I NEVER smoked pregnant, well, not once I knew I was pregnant). Maybe I didn't have anything at all to do with it. I wish I knew so that I could prevent it from happening again, but I'll never know and I have to accept that. However, this random situation that our little family has been dealt needs to be dealt with and that's what we are doing. In our eyes, there is not other choice than to deal with it as gracefully and as positively as possible. I know that there are plenty of people out there who are put in situations where they are given the choice to deal with it well or not so well and they chose to bury their heads in the sand and not really deal with it at all. Dealing with it has taught us lessons and changed us. We have allowed it to. I used to say and really believed that "everything happens for a reason" and "it will all work out the way it's supposed to". But not anymore. I don't believe that or feel that in my heart. That has changed in me. It's kind of scary and kind of relieving all at the same time to think that life is all a bunch of random situations that fall in our lap and the only thing that's certain is that we have to choose how to handle them. That's not to say that I don't believe in God or God's powers. A friend of mine said something so simple yet so profound about God that it hit me hard and has stayed with me...God is love. She may have meant it differently, but I took it at face value. God is love. He is the power that is created from all of our love for people we know and love for people we don't even know. We all have love in our hearts, sadly, some more than others, but when we put it all together, it's pretty powerful! It's that power that helps us to deal with our situations. Who knows. That's just what I'm thinking now and how I feel now. It's liable to change, though...
I've changed as a mother. I used to yell a lot. Little things like messes and forgotten chores used to really make me crazy, but I just don't care about them like I used to. Truthfully, I simply don't have the energy to care about that the way I used to (except for a couple of days each month). I spend more time with my girls. Kady likes to cuddle at night. She is on the top bunk and asks every night if I'll come up to the top and lay with her for a bit. I used to say no more often than I would say yes. I really don't know why I did that. I let being tired myself allow disappointment and sadness into Kady's dreams. I rarely say no now. I sometimes cut it short if I am pooped or it's late and she needs to go to bed, but I love my cuddle time and I look forward to it. I am less judgmental. Period. Everyone has a struggle and everyone deals with it differently. I don't judge because I don't want to be judged. I could go on and on about that, but the bottom line is that the old cliché about walking a mile in someone else's shoes rings so true now. But, I think the biggest change in me has come most recently and is most unexpected. I just feel more at peace, calmer. That's sort of counter-intuitive. With the 1000 different directions we go in trying to juggle the girls school, 2 jobs, Faith's appointments and hospitalizations, etc. I should feel frazzled, but I don't...as much. I feel busy, that's for sure. I often find myself wishing for more time and winning lottery numbers, but I if I'm running late then I'm late. I'll get there when I can. If the girls don't go to bed on time, then they will be tired tomorrow, but it's not the end of the world. If I don't manage to check off everything on my to do list, and I rarely do, I'll just add it to tomorrow's list. I can't be perfect as much as I would like to be and I am more accepting of that. I like this new feeling in me. It's not always there. Occasionally, that frantic old feeling catches me, but it's less and less. I guess even that's a choice.
I've changed as a mother. I used to yell a lot. Little things like messes and forgotten chores used to really make me crazy, but I just don't care about them like I used to. Truthfully, I simply don't have the energy to care about that the way I used to (except for a couple of days each month). I spend more time with my girls. Kady likes to cuddle at night. She is on the top bunk and asks every night if I'll come up to the top and lay with her for a bit. I used to say no more often than I would say yes. I really don't know why I did that. I let being tired myself allow disappointment and sadness into Kady's dreams. I rarely say no now. I sometimes cut it short if I am pooped or it's late and she needs to go to bed, but I love my cuddle time and I look forward to it. I am less judgmental. Period. Everyone has a struggle and everyone deals with it differently. I don't judge because I don't want to be judged. I could go on and on about that, but the bottom line is that the old cliché about walking a mile in someone else's shoes rings so true now. But, I think the biggest change in me has come most recently and is most unexpected. I just feel more at peace, calmer. That's sort of counter-intuitive. With the 1000 different directions we go in trying to juggle the girls school, 2 jobs, Faith's appointments and hospitalizations, etc. I should feel frazzled, but I don't...as much. I feel busy, that's for sure. I often find myself wishing for more time and winning lottery numbers, but I if I'm running late then I'm late. I'll get there when I can. If the girls don't go to bed on time, then they will be tired tomorrow, but it's not the end of the world. If I don't manage to check off everything on my to do list, and I rarely do, I'll just add it to tomorrow's list. I can't be perfect as much as I would like to be and I am more accepting of that. I like this new feeling in me. It's not always there. Occasionally, that frantic old feeling catches me, but it's less and less. I guess even that's a choice.
In anticipation of Faith's hospitalization this weekend, we decided on an impromptu Thursday night family date. The four of us headed over to a 3:45 showing of the Disney movie Frozen. Not my first pick, or really even my 2nd, but both of the girls were anxious to see it so we acquiesced. It was cute! Olaf, the comedic snowman in the movie has had Faith and I laughing all weekend. "Oh look, I've been impaled!" I also liked it because the story centered around 2 sisters looking after each other and needing each others love to get through difficult times. Well-timed, Disney, well-timed! After the movie, we went out for dinner at a Teppanyaki restaurant and enjoyed a fire-filled show and tried to catch shrimp bites in our mouths. It was a lovely evening that had us all in sync to head into the weekend. I do believe I will declare family date night more often. This little family of ours is the greatest gift we have been given in life and I want to appreciate it fully, all of it's perks and benefits. That is a huge lesson learned since August. Time, while it's in your hands use it. Use it all up!
This last weekend hospitalization is kind of a big deal for us. We wanted to make
it fun and celebratory so Chandler kid-napped some of Faith's friends and
brought them up to her room on Saturday morning. They came in wearing light-up cowboy hats and had Bosa donut holes to share with the nurses and enough ice cream bars to share with every family here in the Oncology ward. We played monopoly and Uno and had a beach ball fight in the room. It was wonderful to see Faith laughing a true, hearty belly-laugh as we hit the ball back and forth, sometimes knocking stuff over! At one point a nurse came in for a routine matter. When we apologized for all of the noise, she waved us off and said they all enjoyed the sound of children laughing!
it fun and celebratory so Chandler kid-napped some of Faith's friends and
brought them up to her room on Saturday morning. They came in wearing light-up cowboy hats and had Bosa donut holes to share with the nurses and enough ice cream bars to share with every family here in the Oncology ward. We played monopoly and Uno and had a beach ball fight in the room. It was wonderful to see Faith laughing a true, hearty belly-laugh as we hit the ball back and forth, sometimes knocking stuff over! At one point a nurse came in for a routine matter. When we apologized for all of the noise, she waved us off and said they all enjoyed the sound of children laughing!
Now we are getting ready to say goodbye to the 7th floor, for now. We've said the biggest goodbye to cancer. Faith's pathology report came back just in time for Christmas and it showed that the tumor that started it all has died! 100% dead that is! Hallelujah! Even though it shows that the pre-surgical chemo killed it, we still have to follow protocol to ensure that it doesn't return. This evening, we will leave the 7th floor with no plans to return for chemo...EVER! We will still have 5 out-patient chemo's left, but those are easy enough, comparatively speaking. Our hope is to be done by late April, early May with chemo and then begin intense physical therapy to re-teach Faith how to walk again. We meet with her surgeon next month and hope to get the ok to let her begin bearing weight on her left leg. She is excited about the possibility of rolling over to sleep on her side. It's often the little things that end up being the big ones. This goodbye will end on a good note with a special "Chemo song" that the entire nursing staff is rumored to perform for Faith. I can't wait!
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