It's an odd thing to hate. It's odd to hate the day, like today, where she feels good. I treasure it totally and completely, but on some level I hate it. It makes me hurt. It makes me hurt because it is all too brief. I relish it. I want to savor every moment. I want to bottle it and give it back to her when she feels like crap. I want to have it always there to remind her that she will once again feel good. I want to keep it to remind Alannah and Zachary how much she really does love them and that if she were herself, she would never yell at them the way she does when she feels terrible. I want to keep it to remind me that she is still in there. I want to wallow in the goodness of it all. I want to stuff it in a teddy bear that we can all sunggle every night. I want to inhale it and hold my breath until I turn blue. The cancer, the chemo, the NF...it can take her hair,it can take her energy, it can take her appearance. I won't let it to take her spirit, her joy, her love for just about everything. She felt great today. What an amazing joy it is to see that sparkle in her eye, to hear that laugh, to see that dimple. She is farthest removed from her last chemo dose right now. Because she is the farthest from that, she is the closet to herself. She did have a headache today and her eye was bothering her. She fell a couple of times because of the neuropathy. None of these things mattered much to her. She was happy and loving life and having fun.
This journey changes so many things. The little things and the big things. I have always cherished my kids. Always wanted to be a mom when I grew up. They are the single most important things in my life. I treasure listening to them play together, laugh together, and even the bickering. I adore the way Mandy's hand feels in mine every time we walk anywhere together. How I always know she will reach for my hand. How when she is laying in bed next to me she always has to have some part of her touching some part of me. How you can always hear her before you can see her. How Zachary can always make me laugh, just like his Daddy. How I always know he is going to jump in front and hold the door for any woman or girl within 25 feet of the door, because his Momma taught him chics dig gentlemen and he believed me. How you always know when he is thinking about something that could get him in trouble, you can tell by the glint in his eye. That glint is there a LOT. How Alannah can be 42 years old and 5 years old all at the same time. How no matter how much you think you get the way her mind works, she can still surprise you. How she can sit down and in 2 minutes take a simple thought and turn it into an extraordinary piece of prose or poetry. How she still thinks I know things and have answers, even when I don't. Honestly, I already felt like my heart was owned by three kids and had no idea I could treasure it more. I could. I do.
Boring is an amazing gift. Today was a gift. Everyday is a gift. For all of us. Me, you, everybody. Today, we did ordinary stuff. It was great. We were one kid down as Alannah is away at camp. Mandy and I went to the bank and to Target. Zachary played with a buddy. We came home, had dinner around the table with Daddy and went out for ice cream as a special treat. It was an ordinary, average boring day. We loved it.
Tomorrow is Tuesday. Well, ok, today actually at this point. I plan to take Mandy and Zachary over to the pools and water slides at a nearby neighborhood, courtesy of my adopted big brother, Rob. We will play, swim, laugh and have a great time. We will wear ourselves out being silly. We will have a ball and be together and be in the moment of everything being good. We will have dinner, and go to bed, happy ,tired and full. Except, Zachary will have to go to a friends house. He will be spending the night with a friend again tomorrow night as Mandy and I will need to leave for the hospital early and will be there all day. I am going prepared, just in case she has a reaction and she has to be admitted. We will go, they will pump her full of the nasty drugs that are helping her to eventually always feel like herself, but in the meantime make her feel like she was run over by a train.
My grand plans of laundry, house cleaning and lawn mowing...those aren't looking like they are going to happen. I would rather be boring and play with my kids. So, if you show up and are brave enough to wade through the knee high grass to the front door, please pardon the 5 loads of laundry waiting to be folded that are piled on the couch and don't look at the nasty floor that needed to be mopped a week ago. I didn't get it done. I could have. I chose not to. I had better things to do.
Love to all~
Monday, June 30, 2008
Sunday, June 29, 2008
Changes
Fourteen years ago today, I was big as a house. Small children could find shelter from the storms under my GINOURMOUS pregnant belly, Indian elephants had ankles smaller than mine and no brownie inside of a ten mile radius was safe from me. Today, I dropped off my first born baby at orchestra camp for two weeks. She is excited, but nervous. I just got a text from her telling me goodnight and that she loves me and misses me. She is such a good kid, if I do say so myself. She turns 14 on Friday. How the heck did that happen? Seems like only yesterday she was spitting up on me every two seconds, pronouncing milk "gunk" and swearing she was going to marry Winnie the Pooh when she grew up. Now she is a socially conscious young woman who I am told looks just like her Momma when she was 14. I still like her and she still likes me, which for a mother/teenage daughter team is a heckuva triumph. We will go down to camp and take her out to dinner to celebrate on Friday. It was quite a different scene than the crazed testosterone laden day dropping Zachary off at his camp. This was a college dorm full of a bunch of geeky, instrument toting, artsy types teenagers. The mother ship has landed for my geeky, instrument toting, artsy teenage daughter.
Meanwhile, Mandy has come up with a book idea for me. Ronnie and I were talking about this website and he VERY jokingly said something about it being a book. Mandy was on board with the idea and came up with a title. Her suggestion, "Diary of a Tired Mom." Really, 'nuff said on that one.
Mandy has a rough week ahead of her. After much soul searching, we have decided to switch clinics. We are moving from St Joe's to All Children's. All Children's has a pediatric neuro-oncologist on staff, which would be very beneficial for Mandy, who has numerous brain tumors. Switching is going to be very, very hard and this was not a decision we came to easily and on a lot of levels it breaks my heart. I do really believe it is the best thing for her though. Change is never easy and this is going to be even harder. Also, due to the allergic reaction she had to one of her chemo drugs, Carboplatin, last time, her treatment is going to be a bit different this time. They will be premedicating with Benadryl and a steroid, not sure which one yet. They will also be taking that infusion for that medication out over 2-3 hours instead of the 1 it was previously. At St Joe's they were planning to hold her for observation for 6 hours post chemo I don't know if they will do that at ACH(All Children's Hospital)or not yet. The fear is that carboplatin allergy can cause anaphylactic shock, so we have to watch it very carefully. One more change too, her treatment day is now Wednesday instead of Thursday. It is going to be really rough, but we really feel it is the best decision for Mandy's diagnosis. We could all sure use some prayers for strength as we go into this transition and for her to handle the Carboplatin okay.
Ronnie is actually home this week. Last week was Denmark, next week is Canada again, this week....jury duty in Tampa. Go figure. I suggested he play the crazy card and bail, but apparently it isn't quite that simple. See, all anyone would have to do was show up while I am in frantic "Where on God's green earth is the freakin' pink Nintendo DS" mode and I would be excused so fast the gavel wouldn't even have time to hit the desk. Of course, they would probably have me institutionalized, whatever, minor detail. I could use a vacation, straight jacket is optional.
That's about it for now. I have grand plans for this week. Getting caught up on laundry, because if I don't we are going to have to seriously consider joining a nudist colony. At some point, I should clean my house before FEMA shows up. And, I need to mow the lawn, though I think that puts my whole Rain Forest in Florida preservation act in jeopardy. I was trying to be Green by letting my backyard be knee high. No? Doesn't sound plausible? Eh, can't fault a girl for trying. If we end up having to join the nudist colony because I don't get the laundry done, the tall, tall grass would be greatly appreciated by my neighbors.
Send some prayers our way this week, if you have a minute. It is going to be a tough one.
Love to all~
Meanwhile, Mandy has come up with a book idea for me. Ronnie and I were talking about this website and he VERY jokingly said something about it being a book. Mandy was on board with the idea and came up with a title. Her suggestion, "Diary of a Tired Mom." Really, 'nuff said on that one.
Mandy has a rough week ahead of her. After much soul searching, we have decided to switch clinics. We are moving from St Joe's to All Children's. All Children's has a pediatric neuro-oncologist on staff, which would be very beneficial for Mandy, who has numerous brain tumors. Switching is going to be very, very hard and this was not a decision we came to easily and on a lot of levels it breaks my heart. I do really believe it is the best thing for her though. Change is never easy and this is going to be even harder. Also, due to the allergic reaction she had to one of her chemo drugs, Carboplatin, last time, her treatment is going to be a bit different this time. They will be premedicating with Benadryl and a steroid, not sure which one yet. They will also be taking that infusion for that medication out over 2-3 hours instead of the 1 it was previously. At St Joe's they were planning to hold her for observation for 6 hours post chemo I don't know if they will do that at ACH(All Children's Hospital)or not yet. The fear is that carboplatin allergy can cause anaphylactic shock, so we have to watch it very carefully. One more change too, her treatment day is now Wednesday instead of Thursday. It is going to be really rough, but we really feel it is the best decision for Mandy's diagnosis. We could all sure use some prayers for strength as we go into this transition and for her to handle the Carboplatin okay.
Ronnie is actually home this week. Last week was Denmark, next week is Canada again, this week....jury duty in Tampa. Go figure. I suggested he play the crazy card and bail, but apparently it isn't quite that simple. See, all anyone would have to do was show up while I am in frantic "Where on God's green earth is the freakin' pink Nintendo DS" mode and I would be excused so fast the gavel wouldn't even have time to hit the desk. Of course, they would probably have me institutionalized, whatever, minor detail. I could use a vacation, straight jacket is optional.
That's about it for now. I have grand plans for this week. Getting caught up on laundry, because if I don't we are going to have to seriously consider joining a nudist colony. At some point, I should clean my house before FEMA shows up. And, I need to mow the lawn, though I think that puts my whole Rain Forest in Florida preservation act in jeopardy. I was trying to be Green by letting my backyard be knee high. No? Doesn't sound plausible? Eh, can't fault a girl for trying. If we end up having to join the nudist colony because I don't get the laundry done, the tall, tall grass would be greatly appreciated by my neighbors.
Send some prayers our way this week, if you have a minute. It is going to be a tough one.
Love to all~
Wednesday, June 25, 2008
My mind? Sorry no, it's not here right now. Can I take a message?
There was a time when I was crazy organized. I knew where everything was at every single second. Keys? Over in the basket. Stamps? In the bill thing. The picture of Ronnie and I on our honeymoon 18 years ago? The blue photo album, third from the bottom in the hall closet.
Yea, that was then. That was pre-chemo. Now? Now, most of the time, I have no clue. About much of anything. Today, I was mailing some stuff at my desk. I set down a book of stamps after having addressed one envelope. I addressed the second one, stamps? Yea, GONE. No clue where they went. Twenty minutes later I found them. In the kitchen cabinet. Next to the glasses. Only reason I found them was cause I got thirsty looking for them. I vaguely remember being asked to get Zachary a bowl (which live next to the glasses) between envelope one and envelope two.
Normally, my newly developed idiocy affects no one. Normally, it just costs me an average of 63.7 minutes of my life every day that I will never get back. Normally, it just gives Ronnie and Alannah a good laugh at my expense. For osme reason they find my frantic, constant searching, while muttering constantly how it was right here a second ago for keys, shoes, purses, my brain, whatever funny.I am becoming okay with it. Really. I have become one with the fact that if I don't write it down, there is no way it is going to get done. I fully expect to have to put a post it above my bathroom sink soon that says, "Hey stupid, did you brush your teeth? Brush your hair? How about a shower? Do one of those today?" Now, I never forget medications dosages or names, Dr appointments, last weeks blood work numbers or her weight from last week. I can remember dates of treatment, measurements of tumors and Drs phone numbers. But,anything else? I make no guarantees. Mandy is much like me. The old organized together me. She usually is very organized and knows where everything of everybodies is at all times.
I think , it is possible, that I might have committed a major, MAJOR error. It may very well buy me a spot on the coveted Wall of Fame for WORST. MOMMY. EVER!
Mandy's room was painted on Saturday so everything was in a shambles. We spent Monday afternoon putting things back together. I took this opportunity to regain some of my hyper organized control thing. Yea, right, bad call on my part. I threw away a small truck load of junk. She is 7 and every single piece of paper meant something at some point to her. So, together we went through it all and got rid of about 6 grocery bags full of stuff. To the dumpster. Gone. Ba Bye. I was feeling very proud of my cleaning frenzy. Room was clean and organized and everything in it's place. Ha! I am triumphant cleaning Goddess. So there, messy chaos. Take that.
Then, two days later. Room still clean. I am still triumphant.
"Momma, I can't find my Nintendo DS anywhere," Mandy yells from her oh so clean room. Because did I mention I was triumphant housecleaner super Mom? My cape is on order to complete the super hero look.
"It's around..." Please see page 43 of the mommy handbook, pages 14-23 to read the lecture that followed about paying attention to your stuff. Yea, I know, kind of the pot calling the kettle black when I can't even find my %**$%W#%^W#%^CS STAMPS. But, hey, I am the Mom. Dealing out great big doses of do as I as not as I do are one of the perks of the job. Don't judge me.
"Momma, really, I can't find it anywhere." This is after 30 minutes of hard core searching, the girl had some game playing she wanted to do and the lack of a DS was a real problem.
Cue big sigh, eye rolling from me, "Ok, I am going to help you find it. But you better blahblahblah(Again insert previously discussed lecture here.)"
Uhhuh. Two full hours later. I have now gotten other two kids involved in the search. I have promised a dollar to whoever finds it. I am acting like crazy woman. It is possible I was foaming at the mouth. Nothing. Nada Zip. I tear apart the car. I tear apart the house. I move every couch cushion. Heck, I moved every couch. I went through every drawer, I cleaned all the crap that lives in my car out. Which anyone who has seen my car knows that my heroic, triumphant, super dooper house cleaning self doesn't translate to the car. Ever. It is a rolling trash can.
Nowhere. It is nowhere. Pink DS is officially MIA.
Alannah comes out while I am tearing the car apart. And says, "Momma, you don't suppose it's possible that you threw it away when you were in your cleaning frenzy in Mandy's room do you?" She was speaking in that tone of voice that hostage negotiaters use with the crazy guy in the clown mask holding up the bank.
Now, in my previous life, this would have offended me greatly. How dare you question my superior organizational skills, you mere mortal. Today, nope. Today, this question made me gasp one of those, "Ew, what did I just step in?" gasps and say a word I shouldn't say in front of my 13 year old daughter.
'Cause ya know what? It ain't outside of the realm of possibilities that in the midst of my cleaning frenzy that it somehow landed in, on, or near one of the grocery bags of crap that left the room.
So, now, two hours of my life I will never get back have passed. I am no closer to finding the stupid DS. My super dooper, triumphant cleaning job is now strung out all over the floor like the place had been ransacked by the mob. And I have cussed in front of my 13 year old. Good times.
And of course, the trash men? Yea, they came this morning. And I actually remembered to take the trash cans down to the curb last night. Mainly cause they were overflowing because I forgot to take them down on Friday. Stop it. I didn't have it written down. So I can't even go dumpster diving for it.
Now, I am not saying that I threw it away. I am just saying that I have sure looked everywhere else I can possibly think of. I did look next to the glasses. It's not there. Could you look in some stupid, obscure place in your house and let me know if it is there? And if you see my trash men, could you ask them if they have seen a pink DS? If there is anything I am supposed to do that you know I did not write down, could you please send me a note
Yea, thanks.
Love to all~
*********** EDITED TO ADD************
It has been found! The Eagle has landed! It's all good! And most importantly, it was not me who lost it! Mandy had put it in her purse during the room clean up. Probably afraid that I would throw it away on accident or do something else stupid with it! WOOHOO! Victory, booty shaking, super hero cape wearing, I am triumphant once again dance begins!!
Yea, that was then. That was pre-chemo. Now? Now, most of the time, I have no clue. About much of anything. Today, I was mailing some stuff at my desk. I set down a book of stamps after having addressed one envelope. I addressed the second one, stamps? Yea, GONE. No clue where they went. Twenty minutes later I found them. In the kitchen cabinet. Next to the glasses. Only reason I found them was cause I got thirsty looking for them. I vaguely remember being asked to get Zachary a bowl (which live next to the glasses) between envelope one and envelope two.
Normally, my newly developed idiocy affects no one. Normally, it just costs me an average of 63.7 minutes of my life every day that I will never get back. Normally, it just gives Ronnie and Alannah a good laugh at my expense. For osme reason they find my frantic, constant searching, while muttering constantly how it was right here a second ago for keys, shoes, purses, my brain, whatever funny.I am becoming okay with it. Really. I have become one with the fact that if I don't write it down, there is no way it is going to get done. I fully expect to have to put a post it above my bathroom sink soon that says, "Hey stupid, did you brush your teeth? Brush your hair? How about a shower? Do one of those today?" Now, I never forget medications dosages or names, Dr appointments, last weeks blood work numbers or her weight from last week. I can remember dates of treatment, measurements of tumors and Drs phone numbers. But,anything else? I make no guarantees. Mandy is much like me. The old organized together me. She usually is very organized and knows where everything of everybodies is at all times.
I think , it is possible, that I might have committed a major, MAJOR error. It may very well buy me a spot on the coveted Wall of Fame for WORST. MOMMY. EVER!
Mandy's room was painted on Saturday so everything was in a shambles. We spent Monday afternoon putting things back together. I took this opportunity to regain some of my hyper organized control thing. Yea, right, bad call on my part. I threw away a small truck load of junk. She is 7 and every single piece of paper meant something at some point to her. So, together we went through it all and got rid of about 6 grocery bags full of stuff. To the dumpster. Gone. Ba Bye. I was feeling very proud of my cleaning frenzy. Room was clean and organized and everything in it's place. Ha! I am triumphant cleaning Goddess. So there, messy chaos. Take that.
Then, two days later. Room still clean. I am still triumphant.
"Momma, I can't find my Nintendo DS anywhere," Mandy yells from her oh so clean room. Because did I mention I was triumphant housecleaner super Mom? My cape is on order to complete the super hero look.
"It's around..." Please see page 43 of the mommy handbook, pages 14-23 to read the lecture that followed about paying attention to your stuff. Yea, I know, kind of the pot calling the kettle black when I can't even find my %**$%W#%^W#%^CS STAMPS. But, hey, I am the Mom. Dealing out great big doses of do as I as not as I do are one of the perks of the job. Don't judge me.
"Momma, really, I can't find it anywhere." This is after 30 minutes of hard core searching, the girl had some game playing she wanted to do and the lack of a DS was a real problem.
Cue big sigh, eye rolling from me, "Ok, I am going to help you find it. But you better blahblahblah(Again insert previously discussed lecture here.)"
Uhhuh. Two full hours later. I have now gotten other two kids involved in the search. I have promised a dollar to whoever finds it. I am acting like crazy woman. It is possible I was foaming at the mouth. Nothing. Nada Zip. I tear apart the car. I tear apart the house. I move every couch cushion. Heck, I moved every couch. I went through every drawer, I cleaned all the crap that lives in my car out. Which anyone who has seen my car knows that my heroic, triumphant, super dooper house cleaning self doesn't translate to the car. Ever. It is a rolling trash can.
Nowhere. It is nowhere. Pink DS is officially MIA.
Alannah comes out while I am tearing the car apart. And says, "Momma, you don't suppose it's possible that you threw it away when you were in your cleaning frenzy in Mandy's room do you?" She was speaking in that tone of voice that hostage negotiaters use with the crazy guy in the clown mask holding up the bank.
Now, in my previous life, this would have offended me greatly. How dare you question my superior organizational skills, you mere mortal. Today, nope. Today, this question made me gasp one of those, "Ew, what did I just step in?" gasps and say a word I shouldn't say in front of my 13 year old daughter.
'Cause ya know what? It ain't outside of the realm of possibilities that in the midst of my cleaning frenzy that it somehow landed in, on, or near one of the grocery bags of crap that left the room.
So, now, two hours of my life I will never get back have passed. I am no closer to finding the stupid DS. My super dooper, triumphant cleaning job is now strung out all over the floor like the place had been ransacked by the mob. And I have cussed in front of my 13 year old. Good times.
And of course, the trash men? Yea, they came this morning. And I actually remembered to take the trash cans down to the curb last night. Mainly cause they were overflowing because I forgot to take them down on Friday. Stop it. I didn't have it written down. So I can't even go dumpster diving for it.
Now, I am not saying that I threw it away. I am just saying that I have sure looked everywhere else I can possibly think of. I did look next to the glasses. It's not there. Could you look in some stupid, obscure place in your house and let me know if it is there? And if you see my trash men, could you ask them if they have seen a pink DS? If there is anything I am supposed to do that you know I did not write down, could you please send me a note
Yea, thanks.
Love to all~
*********** EDITED TO ADD************
It has been found! The Eagle has landed! It's all good! And most importantly, it was not me who lost it! Mandy had put it in her purse during the room clean up. Probably afraid that I would throw it away on accident or do something else stupid with it! WOOHOO! Victory, booty shaking, super hero cape wearing, I am triumphant once again dance begins!!
Tuesday, June 24, 2008
Books, boats and tears
It never leaves my mind. Not even for a second. I wish it did. It is unrealistic for me to hope that because she is "just a kid" that she would have any moments where it leaves her mind.
We had a great day today. We went out on an afternoon cruise with the Brad Richards Foundation. It was a great afternoon, with dear friends and a lot of laughs. We went over with our friends the Mayhews. Mandy got to hang out with her very good buddy, Rachael.
Zachary got to hang with his buddy Nathaniel. Zachary, who spends most of his time in a house shared primarily by three girls, always relishes time to just hang with his boys and be a boy.
Alannah made friends with Ariel, Sierra Kesler's big sister. She also got to have Brad put his arm around her and have her picture taken with him! I didn't even get to do that!
She then promptly sat down, texted one of her BFF's and said something similar to "OMG, I just got to have my picture taken with Brad Richards!" Alannah reports the friend texted back "OMG, he is so hot!"
We had a wonderful time. Sherry Tucker was there too. Our kids went to the same elementary school. I got my copy of her new book "Unfinished love:Walking by Faith through Pediatric Cancer." Sherry is an amazing woman, whose son, Zach fought a courageous battle with a very aggressive brain tumor. He waits for her in heaven now. This is a family that have chosen to walk an unthinkable journey with a grace and a strength that I am in awe of. They reach out to families battling cancer through a foundation established in Zach's honor. She is one of the most inherently good people I have ever met. I consider it an honor and a privilege to call her my friend. Please, check out her book. It is heartbreaking. This is a real little boy. It is beautiful and heartwarming and inspirational, but it is also heartbreaking.
We went to the Mayhew house for a while after the cruise and hung out. We came home about dinner time with three tired kids ready for dinner and bed. Mandy had reached her breaking point. She was exhausted. She was just really tired and feeling overwhelmed. She wanted me to lay down with her in my bed until she fell asleep. I did. While I was lying next to her with her snuggled up next to me, she said, "Chemo changes so many things." I said, "In what way, baby?" She replied, "It changes what foods I like. And it changes that now I am scared to sleep by myself."
She wasn't angry, she wasn't crying, in that moment. She was just overwhelmed and sad.It broke my heart. I just said, "I know, baby. I am sorry" and held her until she fell asleep. Really, what else is there to say to that? I watched her sleep and cried quietly.
She had a lot of fun today. So did Alannah and Zachary. So did I. But, it never leaves. We would rather have been home, with no reason to be on that cruise today. Still, at the end of the day, under the stress of fatigue, it comes out from under the bed to haunt her, just like it does me.
I have said numerous times, it is day by day. Sometimes, it isn't. Sometimes, it is minute by minute. We all do the very best we can, every single day. We smile absolutely whenever we can and cry when we have to.
We are so grateful for the very special friends this journey has brought us. We are so grateful for the friends that stand by us and hold us up and hold our hands. I am so thankful for the people like Kasey and Brad who provide fun outings to give our minds something else to occupy them for a while. I am so thankful for people like Sherry, who have been put into a role of being an inspirational support, when she would rather just be an ordinary mom of two kids. I am so thankful for my and Ronnie's families, who call or email with love and strength. I am so thankful for the friends who continue to be there, even when I don't return calls for weeks at a time. The world is full of good and wonderful people and we are so blessed to have so many of them in our lives. Because in all honesty, there are days when we just want to curl up and cry ourselves to sleep. There are days when I do just that. Then the morning comes and we try to stick the monster back under the bed. We get up and find more reasons to be happy, more ways to find joy, more things to be thankful for and continue to be amazed at how easy it is to find those things.
Thanks as always for checking on her. Love to all~
We had a great day today. We went out on an afternoon cruise with the Brad Richards Foundation. It was a great afternoon, with dear friends and a lot of laughs. We went over with our friends the Mayhews. Mandy got to hang out with her very good buddy, Rachael.
Zachary got to hang with his buddy Nathaniel. Zachary, who spends most of his time in a house shared primarily by three girls, always relishes time to just hang with his boys and be a boy.
Alannah made friends with Ariel, Sierra Kesler's big sister. She also got to have Brad put his arm around her and have her picture taken with him! I didn't even get to do that!
She then promptly sat down, texted one of her BFF's and said something similar to "OMG, I just got to have my picture taken with Brad Richards!" Alannah reports the friend texted back "OMG, he is so hot!"
We had a wonderful time. Sherry Tucker was there too. Our kids went to the same elementary school. I got my copy of her new book "Unfinished love:Walking by Faith through Pediatric Cancer." Sherry is an amazing woman, whose son, Zach fought a courageous battle with a very aggressive brain tumor. He waits for her in heaven now. This is a family that have chosen to walk an unthinkable journey with a grace and a strength that I am in awe of. They reach out to families battling cancer through a foundation established in Zach's honor. She is one of the most inherently good people I have ever met. I consider it an honor and a privilege to call her my friend. Please, check out her book. It is heartbreaking. This is a real little boy. It is beautiful and heartwarming and inspirational, but it is also heartbreaking.
We went to the Mayhew house for a while after the cruise and hung out. We came home about dinner time with three tired kids ready for dinner and bed. Mandy had reached her breaking point. She was exhausted. She was just really tired and feeling overwhelmed. She wanted me to lay down with her in my bed until she fell asleep. I did. While I was lying next to her with her snuggled up next to me, she said, "Chemo changes so many things." I said, "In what way, baby?" She replied, "It changes what foods I like. And it changes that now I am scared to sleep by myself."
She wasn't angry, she wasn't crying, in that moment. She was just overwhelmed and sad.It broke my heart. I just said, "I know, baby. I am sorry" and held her until she fell asleep. Really, what else is there to say to that? I watched her sleep and cried quietly.
She had a lot of fun today. So did Alannah and Zachary. So did I. But, it never leaves. We would rather have been home, with no reason to be on that cruise today. Still, at the end of the day, under the stress of fatigue, it comes out from under the bed to haunt her, just like it does me.
I have said numerous times, it is day by day. Sometimes, it isn't. Sometimes, it is minute by minute. We all do the very best we can, every single day. We smile absolutely whenever we can and cry when we have to.
We are so grateful for the very special friends this journey has brought us. We are so grateful for the friends that stand by us and hold us up and hold our hands. I am so thankful for the people like Kasey and Brad who provide fun outings to give our minds something else to occupy them for a while. I am so thankful for people like Sherry, who have been put into a role of being an inspirational support, when she would rather just be an ordinary mom of two kids. I am so thankful for my and Ronnie's families, who call or email with love and strength. I am so thankful for the friends who continue to be there, even when I don't return calls for weeks at a time. The world is full of good and wonderful people and we are so blessed to have so many of them in our lives. Because in all honesty, there are days when we just want to curl up and cry ourselves to sleep. There are days when I do just that. Then the morning comes and we try to stick the monster back under the bed. We get up and find more reasons to be happy, more ways to find joy, more things to be thankful for and continue to be amazed at how easy it is to find those things.
Thanks as always for checking on her. Love to all~
Saturday, June 21, 2008
Dance Fever
Nope, that is not a mug shot of Alannah being arrested in Vegas. Rather it is a pre-recital, hip hop, ready to dance her butt off, Alannah. After many intensive hours in the Momma hair and makeup studio we were ready to tackle another dance recital!Yes, my daughter is wearing some seriously trashy make up. No, I do not let her wear that under normal circumstances. Yes, that is the worlds reddest and ugliest lipstick, but how cute did her hair turn out?! The makeup is all stage makeup and a necessity so she didn't just look like a big white blob under the lights on stage. She rocked out to a way cool hip hop number choreographed to "Fuego". She had it going on tonight up there!
Our very dear friends Diane and her son Nico came over to make the day special! We are always so happy to see them!
Alannah and Nico
Mandy got to see her dance teacher from her younger years that she absolutely adores...Miss Lora!
Mandy and Miss Lora
And a few performance shots, not the greatest quality because of the light, but you get the idea...
Hopefully, weather permitting we will all be headed to the beach tomorrow!
Love to all~
Thursday, June 19, 2008
Nuggets and sparkles
Today was a good day. We went to clinic for a finger stick. Her blood counts were good. We had yummy lunch with our buddies the Mayhews. We went to the bookstore. We went and got a manicure and a pedicure. The lovely lady who was doing her nails looked at me like I had two heads when Mandy said, "I want half of my nails pink and half purple and sparkles on them, please." I think it is possible this is not a request she gets everyday. Go figure. Clearly, she needs to explore her inner 7 year old diva more.
We went off to group at CCC tonight. It was ChicFilA for dinner there tonight. Woooohoooo!!!!! ChicFilA is like crack to my kids. I am surprised it didn't bring on a seizure just looking at that many chicken nuggets in one place. Even Mandy ate tonight!
She is having her buddy Rachel sleep over tonight and she is downright giddy. She is in a great mood, had pizza she didn't eat for lunch, got multicolored, sparkly, incredibly tacky looking fingers and toes, had ChicFilA she actually did eat for dinner, hung out with her buddies at group tonight and now gets a sleepover. All is right and good in Mandyland.
Thanks for checking on her!
Love to all~
We went off to group at CCC tonight. It was ChicFilA for dinner there tonight. Woooohoooo!!!!! ChicFilA is like crack to my kids. I am surprised it didn't bring on a seizure just looking at that many chicken nuggets in one place. Even Mandy ate tonight!
She is having her buddy Rachel sleep over tonight and she is downright giddy. She is in a great mood, had pizza she didn't eat for lunch, got multicolored, sparkly, incredibly tacky looking fingers and toes, had ChicFilA she actually did eat for dinner, hung out with her buddies at group tonight and now gets a sleepover. All is right and good in Mandyland.
Thanks for checking on her!
Love to all~
Wednesday, June 18, 2008
Reminders
Sometimes I think it isn't in the forefront of her mind. Sometimes, I think maybe she has forgotten about it, if only for a second. Most of the time when I think that, I am wrong.
I had put Mandy to bed tonight. I laid down and snuggled her for a while. She was mostly asleep. I left the room and about 10 minutes later she comes out and says,
"Momma, can cancer kill you?"
The conversation was just what you would expect...yes, it can, but, your kind of tumor is very, very treatable. We have good Doctors and good medicine, blah blah blah. At the end of the day, she is scared she has a disease that could kill her. She does. I want to lie and say no, cancer doesn't kill people. I want to lie and say I absolutely know it will all be okay. I want to lie and say there is nothing to be scared of. I really want to say that.
But I don't. Because I believe in being honest. I reassure her while telling the truth, sometimes certainly a very watered down version of the truth, but the truth. Maybe I should lie....I don't know.
I think it never, ever for a second leaves her mind. That is no way to be 7 years old.
I had put Mandy to bed tonight. I laid down and snuggled her for a while. She was mostly asleep. I left the room and about 10 minutes later she comes out and says,
"Momma, can cancer kill you?"
The conversation was just what you would expect...yes, it can, but, your kind of tumor is very, very treatable. We have good Doctors and good medicine, blah blah blah. At the end of the day, she is scared she has a disease that could kill her. She does. I want to lie and say no, cancer doesn't kill people. I want to lie and say I absolutely know it will all be okay. I want to lie and say there is nothing to be scared of. I really want to say that.
But I don't. Because I believe in being honest. I reassure her while telling the truth, sometimes certainly a very watered down version of the truth, but the truth. Maybe I should lie....I don't know.
I think it never, ever for a second leaves her mind. That is no way to be 7 years old.
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