Monday, March 31, 2008

The Difference a Day Makes

...and a caring group of doctors and nurses....

So, the day after my hissy fit in the hallway, the medical team came in for rounds and told me they were getting us our own room. It wouldn't be guaranteed for any length of time, but they did some shuffling around and freed a room because they knew how it may well lift the gloom that was hanging over me. (Not Jill, ME.) By the way (a sidenote! Ha! Isn't this entire blog supposed to be about Jill???).....Jill is doing amazing!!! She finished her chemo on Friday. Finished. Done. Over with. No waning appetite this time (quite the contrary) nauseousness (yet), no rashes, no fevers. She has exploded through this final phase with guns ablazin'. She is our solid gold dancer. Our hoop and holler and shout "Alleluia! That baby got things under CONTROL." She has been a ball of freaky fun (even during the party like a rockstar night we had when I almost lost my mind). Her last chemo was administered as a shot in her thigh....she let out a little whimper and it was done. The nurse who gave it to her was way more nervous than Jill was. Jill even thanked her when it was over and told her she did a good job. Does this girl have any flaws????

Tonight, my good friend Tanya and her 7 and 9 year-old beauty queen daughters Makaiya & Keona (Kaiya & KiKi, for short) came to dazzle Jill with their presence/presents (Troy and Gabriella dolls and the coolest ever dress up outfit Jill has ever ever tried on...I will post a picture as soon as I get them uploaded....slinky red dress, dangling silver earrings & necklace, ruby slippers--borrowed from her own box--and ruby red glittery-rimmed, what made it really hilarious was the dancing....I almost forgot the glittery silver microphone she held right up in her grill while she shook that booty like it wasn't fastened on! Ha! Man I wish I could figure out how to easily upload a video so everyone could see this crazy child in action!! She's a sight to behold...costume or not....). She had us all in stitches.

It was so great to have friends out...they made the time go by so fast (man, did we have fun!). Jill totally looks up to her "more mature" girlfriends and Tanya was so playful with her too! It delights me that people take so much interest in Jill....she's kind of hard to ignore, I guess :) She's so dang smart too! She said something about "srying" tonight...which I knew was "crying", but I wanted to show her off to Tanya (when I act like I don't know what she's saying, she finds a way to get it through somehow) I said, "what do you mean, 'sry'?" Here I thought she'd say, "Like this...(and make a crying sound)"....but she delved into this big explanation..."You know, 'sry'...lite when I dit a bonkey (I say "bonk" whenever she hurts herself) and Dr. Salo says, 'You otay? Lemme put a bandaid on nat.' And I say, 'Owwie! Dat hurts!' Den I sry." And tonight as she was falling asleep, I recited "Goodnight Moon" to her and I got all the way to the end "goodnight noises everywhere" and she said, "And doodnight didn't say dat." And I said, "Yes I did....didn't I?" (I could've sworn I did) And she said, "No....(and she sits up...looking pensive, like she needs to be sure), you didn't. You need to say 'doodnight house and doodnight mouse'." And then I remembered...I DID leave that part out. Wow. Wow. Where did she come from and why do I get her? Needless to say, I am grateful.

Our friend Lisa came out on Saturday and brought pizza for the girls and then made strawberry shortcake with them (with sprinkles!!) and played POGS (remember pogs??) and with felt cutouts and watched one of the myriad of movies she brought....all while Matt & I went to dinner at Outback (thanks Sonia!!). Neither of our children even looked up when we left (or returned)....just goes to show how much Lisa means to them. Thank you Lisa.

So many people have called or emailed to try and offer a little rescue to us in our (my?) time of need. Thank you. Thank you for your good wishes and plans to visit/stay with Jill (especially overnight...that is really big....and we know just how much). Every little thing means a lot....we would be nowhere without every single one of you. Can't wait to see so many friends this week!!

Thursday, March 27, 2008

Adjusting, but keep reading...need help....

So, I'm sitting in the hallway at 4pm right next to boxes of our things and Jill (sleeping!) in her crib under the bright flourescent lights and people tramp tramp tramping up and down the hallway. (That girl could sleep through a football game in the middle of the field!). We are here because they are moving us to a bed by the window that is currently vacant (which means I'll get some sleep tonight!), but it hasn't yet been cleaned and the room we are moving out of is packed with people (a doctor and teaching nurse and interpreter who are explaining cancer to the new family of a one year-0ld. I feel for them, but don't want to listen to the "this is what your life will be like for the next _____ months" schpiel again). Matt moved us in last night with Jill (by himself--thank you thank you thank you) into a shared room on an A side (yuk!) and though our neighbors are as nice as they can be, I couldn't pass up the chance to get a little more privacy. We will likely stay in that room until either a) Jill gets a fever, which is expected with every treatment, but which I'm certainly hoping doesn't happen--she would then be in an isolated room, which would mean nobody in and nobody out or b) April 9th rolls around and this whole unit moves to a different wing of the hospital (due to the construction) and then we're still sharing, but the rooms are bigger & more private (with DVD players!), so really....we're set. Depending on who moves in, of course.....but at least Jill is a sound sleeper and I'll just practice wearing earplugs (or an iPod) more often. There are always ways to adapt. We'll work it out. It's almost over. It's almost over.

Thanks to all those who emailed me to say that I have every right to feel crappy and that I shouldn't apologize for complaining. Your words made me feel better. So it DID count for something and I wasn't irritated because you were trying. Okay, so now I have to pee again for the 16th time today (seriously...16...and it's only 4). Just wanted to let everyone know that I haven't done anything too crazy (yet) and that I'm still so happy for all of the support. Here's a few specifics:

Thank you Renee for hosting our Girls Night at your house (the Breakfast at Tiffany's Theme was priceless) and to all the girls who came to share their love and laughter...I needed that. Thank you Jen M. for the sweet care package you left at our door (Jill loves the mini-Cinderella set the mostest!). Thanks Karen for the Easter surprise you left on our porch (it feels like Christmas every day! I'm saving your goodies for a boring day at the hospital when I have them both). Thanks to Jen F. for the table/chairs (they've come in super handy already), the EXCELLENT dinner/lunch/dinner (that was a LOT of food!) and the bag of fun goodies for the girls.....they are still exploring. It was great to see you and Katie! Renee, thanks for making us such a wonderful 3 course meal (again!). The homemade (need I even SAY you buy ANYTHING???) strawberry shortcake (ok, well, I guess you didn't officially "make" the strawberries) was freaking AWESOME. I'm dreaming about it right now......must call Matt and tell him that I noted a component in such shortcake that he is allergic to so he will not eat the rest while I'm here (heh-heh....sly smile....). Dina, thank you for taking Anna today....for meeting us at the curb and for not being at all offended by my quick dump and run (my alarm didn't go off). Thank you to Kristi & Ian for the munchies care didn't have to mail it! Geez! I could've easily picked it up from you....but thank you so much....I'm on my 2nd package of nutter butters right now (and the baby is already thanking me for his/her early onset diabetes).
8 hours later..........
So that room switch really wasn't such a great idea. Our roommate tonight, though very friendly and very friendly and social. And she had her entire senior class (it seemed) in our room tonight for a few hours. As soon as we got to move in (and Jill, unfortunately, woke up from her nap, giving me not a wink), they moved this chick in and it was a party! all! night! Hard Rock blaring from the computer (check out this cool riff!), 16 Candles blaring from the tv (Long Duck Dong! So Funny!!!!), so many bodies I had to (try and) politely ask them to move every single time I needed to get to something on her side (the sink, the cabinets with the washcloths, to door to escape). I lost it in the hallway...just broke down to my night nurse....I can't do this. I'll sleep on the floor in the hallway.....they tried to come up with solutions....we could move you here/there, but you're trading one crappy situation for another. I'm just spent. I'm done. How many times have I said that? I'm done? I can't be done. Who am I kidding? Every single day (and I mean this), I fantasize jumping in my car and just driving......driving.....up to the Redwoods....up the rocky Oregon coast.....ahhhhhhhhh.....fresh air, sunlight, one needing a damn thing from me. Oh, yeah, except that baby in my tummy. What could I do about that? Welp, back to square one. Nothing to do but stay here and suffer. Enough with the "think positive" mantra. It ain't flyin'. I KNOW it's almost over. Don't SAY it again! I need help though, I really do. Just as I thought things were dying down over there on the A side (I even asked her to turn off her lights, which she did with slight protest), a relative of hers comes in at midnight (I had gotten, I think, a half hour total of decent sleep at that point)....lights on! speaking voices on! movement on! door open! Granted, she did shush this person, which I appreciated, and when I shuffled back in the room from the hallway port-o-potty (eeeeewwwww) and asked (without crying! look at me!) how long the lights would be on, they graciously said they were sorry and would be going to sleep in a minute, too....I said I was sorry for being bitchy...they kindly informed me it was no I really this person????? Matt has offered (kind, dutiful soldier) to take over every night. But what would THAT be like? Work/hospital/work/hospital....times 5? And no Anna all week (or rather, from Anna's point of view, no Daddy all week)?????

So here we go....I ask again (and like I say to God about Jill's cancer not coming back, if you do this for me I promise I won't ever ask for anything ever again!!!!!): would you please, if you can, help us? One more time???? We need volunteers to come up here (I've learned that very few of you have any daytime hours available) around or shortly after dinnertime (5/6) and stay the eve/ be relieved (on weekday mornings) by 8am (earlier if you need). If you can do this, please let me know as soon as possible. Jill is very adaptable....she is doing fine.....may be a little tired/sick from the chemo over the next few days, but after that (knock on wood), I think we'll be free and clear (but stuck in this place with no way out). I'm going crazy people. I seriously am losing my mind. Whatever you can do would be so appreciated.

Tuesday, March 25, 2008

Nothing Nice to Say

My Mom always told me (maybe she heard it from your mom) that if you don't have anything nice to say, don't say anything at all. Well, maybe that is why I haven't written anything in awhile. I haven't been feeling well due to the pregnancy. Physically and emotionally, I'm just extremely tired. I know the end is in sight, but I'm dreading this last month, feeling nauseous all the time and like someone slipped something in my drink (I could fall asleep just about anywhere, anytime). The girls fight...and I mean, knock down-drag out fights....about 80% of the time, and I'm just drained. I've gotten pretty good at completely ignoring their squabbles, but sometimes someone really gets hurt or one of them is REALLY doing something she should NOT be doing and I have to step I feel like I'm correcting/ordering/scolding constantly. I'm not exercising and I'm eating junk because I'm too tired to prepare healthy, so body image is a big ugly thing...and it's only getting worse. I wish I could be excited about having another baby. Right now, I'm just trying to imagine how in God's name I will do this. So anyway, if I haven't returned your calls or called you to chat because you're my friend and that's what friends do....this is why. I'm down. I feel like I've been down this whole second half....I want to be the person from the first half....the person who had hope and who found lessons in every little thing. Ha. That didn't last long did it? Not that I don't have great joyful moments, they're just fewer and further between now. If I don't seem like myself when I see you in person, well, I'm not, and I'm sorry for that. We go back to the hospital on Wednesday night for one more month. It's only a month. But it's a month. 30 days with no privacy, having to dart out to the dirty disgusting hallway bathroom every 5 minutes, cuz that's how much I have to pee and I can't use the bathroom in our room when we're sharing one. 30 days of monotony....Jill flitting from one mundane, repetitive activity to another because SHE'S bored too. Chasing a cooped up little wild woman up and down the halls, fretting that she's gonna pull her line out because lately, she's just erratic in her movements and thinks its funny to push the limits as far as they'll go (don't blame her, but how can I keep up now?). Smelling the familiar and now nauseating smells of that awful food. Dealing with the varied personalities of so many doctors, nurses, parents, kids, and not being able to escape and hide (like I feel I'm doing now from even people I like). Having to keep that smile pasted on my face while I'm in the hallway with Jill and everyone is constantly walking by smiling at her and me and commenting on how "cute/funny/smart" she is....because if I don't, I get that look of concern and "what's wrong? how are you feeling?" 20 times a day. And what do I say to that? "I'm fine"????? "Oh nothing"????? "I'm miserable and want this nightmare to be over"????? Okay. And what does the nice volunteer/staff/parent who's going through the same hell say to that? "Oh honey, I'm sorry. It'll be okay. It's almost over?" No, I really don't want to hear that. Because that I know. It doesn't help. Not that I don't appreciate the concern, but you have no idea what I personally am going through. Easy for you to say. You swap places with me and do it for a week and watch how fast you sink. Ugh.....I'm sorry. I mean well, I just don't know how to be that way right now. Maybe just telling everyone I'm fine and saying positive things will force me to really feel that way. I'll keep trying.

So, was it worth it for me even to write this? Did I teach anyone anything? Did I learn anything myself? Am I better for it? Are you? Nope. But I thought I should explain my absence. And this is reality for me. Don't feel obligated to send me your good wishes.....I know you care and that you would take this from me in a second if you could. Truthfully, I'm embarassed that I'm not handling this (any of this) with a more positive attitude. I wish I could get there in my head. I'm hoping I will soon. If you want to know what you can do (as if you haven't already done enough).....come play with Jill at the hospital. She's on chemo and won't be feeling good Wed-Fri, so anytime after Saturday morning should be great (call first, just in case she's not doing well). If you're well, she would love someone to play princesses with her or read to her or just be interested in whatever she thinks is fun. And if you make a little dinner for your kids that night and have a little extra, she'd love some real food and sometimes I don't get around to making it the night before. Thank you for your continued IS almost over. Sorry for my crappy attitude.

Sunday, March 23, 2008

How Could I NOT Share This?????

This is the latest entry from Mary Rutz' Blog....her son Aaron received a bone marrow transplant from his older brother, Adam, just over 2 weeks ago. An incredible miracle has occurred :)

Saturday, March 22nd

We have moved from darkness into the light…

The attending doctor came in today and told Aaron that he could go home before the end of next week. That’s probably LESS THAN FIVE DAYS FROM NOW! Aaron was SOOO excited he was practically jumping off of his bed. The only thing we have to do is change all of his medicines from IV to oral form. As soon as Aaron can show them that he can take all of his meds and his levels stay stable, he can go home.

What a perfect day to hear this news.

We (Aaron and I) celebrated our own little Easter Vigil. We felt at one with the Church as we asked…

Lord have mercy.
Christ have mercy.
Lord have mercy.

All you holy men and women, pray for us…

Lord be merciful…save your people
From all evil…save your people
From every sin…save your people
From everlasting death…save your people
By your incarnation…save your people
By your death and resurrection…save your people
By your gift of the Spirit…save your people
Have mercy on us sinners…save your people

Christ, hear us. Lord Jesus, hear our prayer.

Lord, give new life to your chosen, Aaron, by the grace of his baptism. Lord Jesus and ever living God, send your Spirit in its fullness on Aaron, who believes and professes you.

Christ, hear us. Lord Jesus, hear our prayer.

We watched the video of Aaron’s baptism. It seems so long ago now. Never, ever did I think that I would be sitting where I am tonight, hearing my son renew his own baptismal promises, the ones that we (Michael and I and Sr. Kathy and Barry) made for him when he was a baby.

And then we sang together (oh, you should have heard him):

“Let the poor man say, ‘I am rich in Him.’
Let the lost man say, ‘I am found in Him.’
Oh, let the river flow.
Let the blind man say, ‘I can see again.’
Let the dead man say, ‘I am born again.’
Oh, let the river flow. Oh, let the river flow.
Let the river flow. Let the river flow.
Holy Spirit come. Move in Power.
Let the river flow. Let the river flow.
Let the river flow. Let the river flow.”

Just before he went to bed he asked me, “Mom, do you think the Easter Bunny will remember me here?” In the morbid humor that he and I share I said, “I don’t think the Easter Bunny would forget a kid who has leukemia.” I caught myself just as I finished.

And he said to me, “But Mom, I don’t have leukemia anymore.”

He is sleeping now, but his Easter basket is out. The eggs are hidden all around the room.

We are ready for the new life found on Easter morning.

Happy Easter, everyone.

Wednesday, March 19, 2008

Big News

Jill's going to be a BIG SISTER. I went to the doctor today and she confirmed that I am 8 weeks pregnant (due late October). How this happened, I have no idea. Seriously....I've never been one to have trouble conceiving (not complaining about that, by the way, I realize what a blessing that is), but it seems impossible that it happened when it did. And trust me, this was not in OUR plans (guess someone else has bigger ones for us). We can do this. We can do this. (I'm freaking out). Anna is very excited to be getting a minivan just like her best friend, Keili. I am very sad to have to give up my Montero. Hey, "Honest John"......need you to get me a good deal on a Town and Country. Let's talk...oh yeah, do you finance???? Hee hee......

Tuesday, March 18, 2008

Now Entering Our Final Lap

So, I spent a good hour typing up a very detailed (and heartfelt) entry on the 13th.....I don't know what happened, but I lost it, hence why you haven't read something from me in awhile. I was pretty frustrated. To REALLY sum up that entry....Matt & I took the girls to Disneyland last Friday. She had a fabulous time, especially meeting the princesses (Snow White was her favorite...they even have a wishing well & a fountain with statues of her & the can hear her voice from the waterfall, and echoing in the well, like in the movie...that was a big highlight!). She got a "special invitation" along with her sister to visit with Snow White and Jasmine one on one for about 10 was so darling. We got great video. She loved the Teacups and Dumbo (we were able to secure a disability pass as she shouldn't be in the middle of big crowds of people, so we never had to wait more than a few minutes for each ride!) and the parade!! It was such a great day. We've been to a lot of parks.....I've really chilled out with this visit home. I guess last time home it was so hard because it had been and was raining so much...we were worried about mold/fungus in the air, and just kind of stayed holed up at home (which drives me nuts). Anyway, so today she actually dug in the sand and buried her feet and hands over and over, and I wasn't worried. Mainly because her WBC count is over 2000. She usually starts chemo again right around 1100, so she's past due. The doctor wants to admit her to the hospital tomorrow night (Wed). She will have 4 doses of chemo, 12 hours apart, then shots in both thighs with another drug, then she can go home (Friday night through the following Wednesday), assuming she is fever-free and we can control the nausea with liquid meds at home. She will be in hospital for her last big stay from April 2nd through the end of the month. My parents are coming out for a week or so right in the middle, following my sister's wedding, which I'm very bummed about not being able to attend :( But it will be great to have their help, and my Dad hasn't seen Jill since she was diagnosed. So, this entry wasn't nearly as "gripping" as perhaps my deleted one was, but thems the facts. I'm off to enjoy a nap at home with my best little buddies. It has been delightful spending all of this fun, focused time at home with my family.....I just so wish Matt could be here more often. Someone has to afford us this million dollar treatment (literally and figuratively speaking).

Wednesday, March 12, 2008

Shared Perspective

My friend Mary's son Aaron received a bone marrow transplant from his brother, Adam, a few days ago and is doing very well (thanks for your prayers). I wanted to share a beautiful piece of her blog with you:

From AaronRutzCarePage at, by Mary Rutz:
I got to go to Church today and it was one of my favorite Sundays of the year. The gospel was the story of the Lazarus being raised from the dead. I always love the way our 10:30 choir sings “Roll Away the Stone” throughout the Gospel reading, and then the entire song later during the mass. I had an interesting thought during the homily.

We know that Jesus raised Lazarus from the dead. He had been in the tomb for FOUR days, and we know what a miracle it was for Jesus to raise someone from the dead. We know that Jesus said, “I am the resurrection and the life; whoever believes in me, even if he dies, will live and everyone who lives and believes in me will never die.” We know that Jesus said, “Lazarus, come out!” and he did. But the part that struck me today was what Jesus said to the people BEFORE he called to Lazarus.

He said to them, “Roll Away the Stone.” I guess it is strange that he asked them to do this. After all, he was about to RAISE someone from the DEAD, certainly he could have moved a little old stone all on his own. But he asked the community gathered there to roll away the stone. It was important for the community to do their part in that miracle. They didn’t just sit back and let it happen, they had their part to play.

So when I think about this story… what it means for Aaron… the promise of eternal life… the hope for and belief in a miracle… and what I learned today… that a community plays a part in the miracle, too. I KNOW that God can heal Aaron, and I know how much our community has been called upon to play their part.

I see this with each passing day. When I feel the weight of the stone and I think that our little family can’t move it by ourselves… I come home to flowers on our front porch and letters in our mailbox; to emails and messages of support; to lovingly prepared meals; to videos and music; to thoughtful gifts; to smiles and to phone calls; to friends who care for our children and those who offer their own blood; to words of encouragement; to hugs and tears; and to so many prayers.

So thank you everyone. Thank you so much for being a part of this miracle.

Saturday, March 8, 2008

Don't Forget to Include Your Contact Info

To all those who leave comments...thank you! I really enjoy reading them. And being as I have no way of knowing how many people read this thing (or who they are, or if anyone does anyway), it is nice to get some feedback sometimes, especially the "it's okay to lose it as long as you get it back" kind of comments :) Which leads me to....I have wanted to contact some of you directly after you leave a comment, but I don't have your email address (Connie Stewart!! Did yours change b/c every email I sent to you for awhile kept getting returned...I thought you just didn't like me anymore :). And David (Europangan??), PT from Launch.....don't know if you still read this, but how can I contact you? Anyone know?

Oh, and to those who have sent packages or gifts or done something amazingly nice for us in the past month or two (Jolly Jaeger....the embroidered pillowcase is heavenly sweet....and your daughter who sent us the box full of toys/books/DVDs/CDs....goodness just runs in your family!! By the way, the girls absolutely LOVE the Disney Cash Register :), I am so sorry for being such a slacker about thank-you notes!! It has been a hard hard month for me.....I intend to thank everyone personally, really I do. And I will. Anyway, I'm sure you understand. People don't give from the heart for a lousy little thank you note :)

Tuesday, March 4, 2008

Day 29 and counting.....

So, tomorrow is Day 29 in the hospital (longest stay of yet) and Jill's ANC is still ZERO. She got platelets today, maybe that will give her a boost! Yesterday was a little stressful....she had to get an IV in her hand (only 2 attempts this time, but it still hurt...I cried right along with her...because she so rarely cries) for her monthly kidney test. I carried her down to the procedure room. She was so excited to be off the unit! It was sad for me to watch her eyes dart around like a puppy in a new kennel surrounded by new dogs....I think she was smiling a little (she was wearing her mask, so dutifully). She was happy, but it just made me realize how completely isolated she has been. So we got to the treatment room and she laid on a table for about 10 minutes while they injected a dye into her hand. She just stared at the ceiling and me and I sang to her...she twirled my hair and attempted to suck her thumb, then remembered she was wearing a mask and didn't make a fuss about it. She just held my fingers really tightly with her thumb-sucking hand and every time I finished a song she'd sigh, "Again". I held her in my lap for another 20 minutes while we waited for the transport guy to walk us back to her room. Any other 2 year-old would be a nightmare in these situations, but Jill.....she just rolls with it. They say sit, she sits. They say be quiet, she's quiet. I adore this baby for her patience and calm while in the storm. She's got it together way more than the rest of us.

When we got back to our room, we were told that unfortunately, we would be moving into a shared room (this makes only the 3rd move this hospital stay, so I guess we're "lucky"....what a vague and contradictory term to use in this situation). Gone are the peaceful quiet times and tv on only when we want it. Gone is the space to store the buckets of books and toys and clothes and food.....we still have a little space and our roommate is a beautiful and very positive 12 year going on 20 year-old girl who is delighted to finally be sharing a room with sparkly little Jilly.

After we got settled in our room, Jill donned her cutest blue frilly poofy tutu, her fuzzy butterfly wings, her pizzazy tiara with alternating pink & purple jewels, and with magic wand in hand made the double doors open out onto the world beyond with a "Bibbidy Bobbidy Boo!" There were 4 young people standing in a huddle right outside....they were holding each other & had obviously been crying a lot (the Pediatric ICU is right next to the HemOnc unit, so there are very often gobs of family and friends waiting to visit or hear news of how a young loved one is faring....passing them in the hallway always makes me a little sad as the kids they are there for are usually in pretty dire accidents, sudden strokes, severe asthma attacks....many of them are in's especially hard to see families of kids who were in our unit just a day before....we could be there at any moment, just like them). One of the guys in the huddle noticed Jillian standing there in her prettiest pretty girl garb, little bald head, look of surprise that her magic worked (again), and he alerted the others.....they all stared at her, adoringly and smiled, and waved. The doors closed, as they do after a few seconds, and a look of sadness came over Jill's face. "It's it again!" I encouraged her. "Bibbidy Bobbidy Boo!" she exclaimed. I subtly pressed the button and the doors (magically) opened once again. This time a crowd of 8-10 had gathered, many teary-eyed and tired, but all gleaming with delight at this little happy princess, hooked up to an IV pole. We did this again and the 5th time, the hallway right outside of the door was absolutely packed with members of this family (I later found out that the girl they were there to rally around was a teenager who had overdosed...she was taken off her ventilator the next day). They held hands and waved at the little angel before them....her loyal subjects. Jill was so thrilled to have all of this attention. People she believed were appearing out of nowhere just cuz of her fairy princess powers. People that shared in her joy even through their deepest sorrow. They wanted her to keep coming back, to take their minds off their pain for a few minutes, but my royal highness tires easily of such activities, so she changed directions and danced happily down the hallway to spread her love in other ways. This experience brought home one more time how truly blessed I am to have this little girl in my life. To be one of the few who gets to hold her tightly ever morning, noon, and night while she falls to sleep, to smell her sweet baby breath (even in the morning, it just smells delicious!), to be her Prince, her Troy, even her Evil Feen (Queen). I love this dolly.

Tuesday brought a few exciting moments.....first of all, our good friends Missy & Renee and their daughter Rhiannon came to the hospital to give us a care package. They had arrived the Wednesday prior and we had great intentions of spending a little bit of every day with them. Unfortunately, they were sick and it just wasn't possible. This cold/flu season has been a doozy...I am glad we called off the visitors (at least those who would have to fly in) as likely, this would happen time and time again. At least they thought to make a mini-vacation out of this before they made their reservations.....they got a hotel in Anaheim (right by Disneyland) and visited the parks every day of their visit. Their 4 year-old daughter had a fabulous time (she was even invited as a very special guest into the Princesses' Castle!) and I think they did too....but it was very hard not to be able to see them. Their friendship means the world to us and it ripped my heart out that they were 45 minutes away from us for 6 days but nowhere close to being with us. The scrapbook Missy put together of our family (Wizard of Oz themed, of course) is phenomenal! The greatest gift I can imagine.....I couldn't hold back the tears.

After our friends left, I was relieved for the WHOLE DAY by a lovely young woman named Jamila. She is the daughter of one of Matt's co-workers (and an incredible woman herself). I had only met her once....she helped out (very quietly and humbly) at the Torrance Bone Marrow Drive....she introduced herself to me as she was leaving and I was touched that someone we didn't know would dedicate so much of their time to help our baby. She offered to help out with Jill a week or so ago (when I put out the APB for assistance and Jill came down with her fever), but it didn't work out, and honestly, I didn't expect I'd hear from her again....when I was her age, I didn't do much volunteering!! Anyway, she emailed me on Monday that she could come stay with Jill as long as I needed her to on Tuesday, and that she did. She played with and cared for Jill all day....until Matt came to relieve her after work. I got to go home and granted, I cleaned, it was refreshing and freeing to be out of that place! I don't know how Jill does it. I'm going nutty in there!!! So thank you Jamila......that kind of favor cannot be reimbursed. Jill had a blast with you and I had a BIG break. You are an incredible human being :)

So while I was home on Tuesday, I called my Aunt Mary (who lives in Fresno) and she reiterated that she would be available anytime we needed her. I said, "Okay, how about yesterday?" And she hopped in her truck with a week's worth of clothes and made the 6 hour drive down to SoCal. I love spontaneous people!!!! She is currently at the hospital with Jill (I left her there at noon today and she is spending the night tonight while Matt attends to new water damage....don't ask) and I sit on my butt typing (actually, when I'm done here, I intend to play with Anna a little and get some really good sleep).

So God Bless all of the people who have reached out.....we have 'em lined up to help over the next 4 days....without all of you, they would seriously have committed me already. I don't know how to thank you. But I really feel like you all (family or not) are our family. This really is how the world should work. I don't know if I would be an iota of who you have been to us if the situation were reversed, but after having this experience, I sure will try. Once you feel it working for you, you can't help but want to make that magic for other people. What feels small and insignificant to you (bringing up some split-pea soup, making a meal, visiting, calling, emailing an encouraging message, babysitting, helping with house repairs, cleaning, driving Anna around, sharing recipes or giving me a cookbook that you knew I'd love, mailing us a donation, organizing fundraisers, hiking to raise funds for the cause, making hats/blankets/clothes for Jill, etc....), it's all huge to us.

Please keep in your prayers the Rutz family (Michael, Mary, Adam, Aaron, and Isaac). They are at UCLA, 3 days away from Aaron's bone marrow transplant. Adam (12), Aaron's (9) brother is his donor. Mary keeps all of us updated in her daily blog....I'm on the edge of my seat with this one. It's big. They are a very strong family with very strong faith. I admire the courage in every single one of them. But they definitely need positive energy aimed in their muster it up and send it!

Saturday, March 1, 2008

Are you building cathedrals?

(This was sent to me by my good friend, Renee, and I felt inspired. I hope it speaks to you the way it did to me.....the rewards are in the creating.....)

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, Can't you see I'm on the phone?' Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.

I'm invisible; "The Invisible Mom."

Some days I am only a pair of hands, nothing more:
Can you fix this?
Can you tie this?
Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again.

She's going, she's going, and she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she
stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself as I looked down at my out-of-style dress; it was the only thing I could find that was clean. My unwashed hair was pulled up in a hair clip and I was afraid I could actually smell peanut butter in it.

I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals o f Europe . I wasn't exactly sure why she'd given it to me until I read her inscription:

'To Charlotte , with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book.

And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals - we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam t hat will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.'

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It
is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride. I keep the right perspective when I see myself as a great builder.

As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'you're gonna love it there.'

As mothers, we are building great cathedrals. We cannot see if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.