*sigh*

I've always known that it is with those who are nearest and dearest to us that we are able to show our best side...as well as our worst side. I always wanted to believe that when the nearest and dearest is facing a horrible illness that for those around that person the best side would be amplified and the worst side would be diminished. Yesterday, I learned that this is not necessarily true. Even though I have forced myself to re-frame the situation and remind myself that stress and frustration can cause people to say and do things out of the ordinary. Even though I realize that culture, personality, & experiences influence how love is expressed and received. Even though I realize that differences in communication can cause misunderstandings. It still hurts. Every time something like this happens I have to remind myself to be quick to listen, slow to anger.

Parking.

Remember my little vent about parking? Disregard. I found out that if a patient has been admitted for more than ten days. (unfortunately, joe far exceeds that) families can puchase discount tickets. YAY!!!!!! I just wish that I was aware of this sooner. :P

whoa...62 things.

1. What time did you get up this morning?
* Well, these days I practically live at the hospital. So it would be which time? Joe has a med that is administered around 2. Blood draws and vitals take place around 4:30am. And a stream of doctors and nurses start appearing around 6:30am. I try my best to go back to sleep after every interruption until about 8:30am. (Joe usually gives up by 7am)

2. Diamonds or Pearls?
* In general, diamonds. But I think there is room for both in my world!

3. What was the last film you saw at the cinema?
* oh my goodness. I have no clue. i *think* the last time i was at the cinema was when we went to san diego last year. So, it was either whatever number x-men movie, or the Breakup.

4. What is your favorite TV show?
* I'm a teener bopper at heart, and I'm secretly in love with Gilmore Girls. But now that is no more. I also love The Office, and Scrubs.

5. What did you have for breakfast?
* A piece of cake. The really yummy green kind that you can get in chinatown. (I know there is no chinatown in PGH. I don't know where the cake is really from...someone gave it to us.) Also, a bit of bacon and cranberry juice. Healthy, right?

6. What is your middle name? Victoria (but it's not on my birth certificate.)

7. What is your favorite cuisine?
* There is no way I could possibly choose. I just love food way too much.

8. What foods do you dislike?
* MUSHROOMS!!!!!! and canned green beans.

9. Your favorite Potato chip?
* Troyer Farms BBQ. But I'm also quite fond of Pringles.

10. What CD is in your car stereo at the moment?
* I can't remember. Some Christian CDs...and maybe Norah Jones or Kings of Convenience or something...or maybe I changed them. Can't remember.

11. What kind of car do you drive?
* Lexus SUV. Yes, I know I'm spoiled.

12. Favorite sandwich?
* hmmmm...I'm not sure. Choosing favorite foods is way to hard for me. I do love Philly Cheesesteaks!

13. What characteristics do you despise?
* snootiness.

14. Favorite item of clothing?
* hoodies.

15. If you could go anywhere in the world on vacation, where would you go?

* uhm...fiji? :) actually, I'd love to visit australia and new zealand...not to mention a million other places.

16. What color is your bathroom?
* beige.

17. Favorite brand of clothing?
* i'm generally an ann taylor girl. but i also love my cheap clothes from target!

18. Where would you want to retire to?
* I would be prefectly happy staying in Pennsylvania forever. But I hear that Seattle is nice.

19. Favorite time of day?
* evening.

20. Where were you born?
* Pottsville, PA

21. Favorite Sports to watch?
* Stuff like gymnastics and ice skating.

22. Who do you least expect to send this back?
* Stole this from a blog, so this question doesn't make much sense anymore.

23. Person who will respond first?
* no clue.

24. What laundry detergent do you use?
* the on sale kind.

25. Are you a morning person or night owl?
* A night owl.

26. What size shoe do you wear?
* 5.5-6

27. Favorite animal?
*Giraffes, elephants, and monkeys.

28. Any news you'd like to share with everyone?
* how about, SIGN UP TO BE A BONE MARROW DONOR!!!!!!!

29. What did you want to be when you were little?
* a dancer, a singer, an actress, violinist in the pit orchestra of a broadway musical, professional page turner, teacher, mother...i wanted to be a lot of things.

30. Favorite candy bar?
* Take 5

31. What are your favorite childhood memories?
* summer vacations with my family. music camp.

32. What are the different jobs you have had in your life?
* Pharmacy tech. Music therapist. Therapist.

33. What color underwear are you wearing?
* bright pink!

34. Nicknames:
* In college, it was Mulan

35. Piercing?
* Just each ear, once.

36. Eye color?
* Brown

37. Ever been to Africa?
* Nope. But hopefully someday.

38. Ever been toilet papered?
* Nope. I think my parents were, once when I was little.

39. Ever loved someone so much it made you cry?
* you bet.

40. Ever been in a car accident?
* Yes. But not while driving myself.

41. Favorite restaurant?
* one of my favorite restaurants is Soba.

42. Favorite ice cream?
* Chocolate Peanut butter, coffee, or mint chocolate chip.

43. Favorite flower?
* Daisies and Roses.

44. Disney or Warner Brothers?
* How about both?

45. Favorite fast food restaurant?
* I have to say McDonald's for sentimental reasons. But any fast food is yummy to me.

46. What color is your bedroom carpet?
* a neutral beige-ish color

.47. How many times did you take your drivers test?
* hahaha. Lisa, I took it twice too!

48. Before this one, from whom did you get your last Email?
* I think Sheena.

49. Which store would you choose to max out your credit card?
* If it were still around, it would be Kaufmann's. But now, I guess Macy's. You can get everything there. Kaufmann's had way better deals though.

50. What do you most often do when you are bored?
* knit, read, watch tv, surf the net.

51. Bedtime?
* between 11-midnight.

52. Who are you most curious about their responses to this questionnaire?
* no particular person

53. Last person you went to dinner with?
* friends from crossroads!

54. What are you listening to right now?
* the rain. oh, but the sun just came back out.

55. What is your favorite color?
* red.

56. Lake , Ocean or River?
* Ocean.

57. How many tattoos do you have?
* none. I'm way to fickle for a tattoo.

58. Which came first, the chicken or the egg?
* hmmm...I say chicken.

59. How many people are you sending this Email to?
* I'm posting it in my blog, since I found it on a blog!

60. Who sent this to you and what is something you didn't know about them?
* Lisa...I didn't know she didn't like seafood and also loves chocolate peanut butter ice cream!

61. What materialistic thing would you ask for if you had one wish to make?
* i don't know right now. i just want my joe to be all better. so i guess, perfect cord blood.

62. Time you finished this email? 3:21pm

Seven Things

****Updated, because I accidentally published before I finished my seven things!****

Apparently, I have been tagged by dear sweet Lisa. I get to share seven things about myself. As if the world really needs to know any more about me. This should be interesting...for me. Not necessarily interesting for others!

1. For the past year, my mind has been pretty much consumed with how to be a good caregiver. I make myself crazy all the time. Some days, when someone says, "you are such a great wife and example," I think, "yes i am! thank you for noticing!" Other days, it makes me feel awful because the real truth is that I believe that I fall FAR short of what a great wife/caregiver should be. I feel like I've faked everyone out, and then I feel all down on myself. I actually have a confession. Which is that I started a more secret blog so that I could vent some of my frustrations to people without venting to the world. But then I got all paranoid, so I haven't really vented all that much. It's not so much that the "real" blog doesn't express my true feelings. It's that about once a month I have a couple days when I just want to scream and scream and scream...and generally, those couple days do not get broadcast to the world.

2. I absolutely love, love, love, love music. I grew up playing violin and piano. I played clarinet and saxophone for several years. I learned how to play guitar, and now I'm teaching myself how to play ukulele. But even though I'm probably better than the average person walking down the street, I'm far from being a professional. I've always had this split personality with my music. Part of me wants everyone to listen to how amazing I am. The other part of me is insanely shy about playing for others. The other weird thing is that as much as I love music...my music theory skills are mediocre at best, and I'm surprisingly awful at being able to match music to titles and artists.

3. In case you haven't figured it out yet, I do not have very high self-esteem. Most days, I can get over it and feel good about myself. But sometimes that low self-esteem rears its ugly head and I feel low and get jealous of others for no good reason. Geez. I'm only at number three, and I'm sure anyone reading this is ready to send me to a shrink!

4. One of the things that I love the most about me and Joe is that we don't fit into a particular mold. We have all kinds of friends. Some would see us as being the snooty frou-frou type. Some would see us as being quite average. Some see us as being really frugal. It's really fun for us to be able to get dolled up one day and eat somewhere fancy-schmancy, but then dress random another day and eat at Wendy's. We consider ourselves people who appreciate fine things, but we don't want to live that lifestyle. It makes life more fun and interesting.

5. Despite the low self-esteem mentioned in #3, I've always been an extremely optimistic and positive person. I truly believe that I've been blessed with so much, and every day I hope that I can pass on some of the cheer that I feel onto others around me.

6. I had braces for 5 years. I went through clear brackets and metal brackets. I had little rubber bands. I had springs. I had some bar across the roof of my mouth. (Fortunately, I avoided the jaw expander thing!) I even had to sleep with a head gear for some time. When I first heard "head gear" I thought about the kid on Mr. Belvedere (does anyone remember that show?) and amost freaked out. Then I found out I only had to wear it to sleep (like Ugly Betty!) The first night, it hurt so much to put it on, I cried.

7. I love food. I just love it. Cheap food, fancy food, Italian, Chinese, Indian, Korean, Ethiopian...whatever. I love to try everything. I don't love EVERYTHING I try. But, I do love to try new things. However, I DO NOT like mushrooms. I will eat food that is cooked with mushrooms...but I try to avoid the mushrooms. If I feel really bad about leaving a pile of mushrooms on my plate though, I'll swallow them. :)

Okay...now I get to tag people. So, I'll tag the seven people who possibly read my blog! rachel, louis, obLiVyOnGiRL, Ars Subtilior, Eric, Christy, shc118. Anyone else reading this can pretend to be tagged too. hahaha. :)

Mr. Dangly

So, I discovered Mr. Dangly on the internet. He was just so cute, so I decided to try my hand at making a Mr. Dangly with stuff from my stash. I used some type of Superwash wool from KnitPicks. I believe the colors are Capri & Sunshine. The scarf is some leftover sugar'n cream cotton. He didn't turn out very perfect. I discovered late in the process that I did half of my increases wrong which makes Mr. Dangly a bit sloppy. I also got mad at the head more than once. All the body parts, I did in the round with my adorable little dp needles. The tail is an i-cord.

It is my first stuffed creature, so I'm proud. I think that he has a bit of character and charm that can only be found in a handknit creature.

this makes no sense.

when you visit the BMT office at the hospital, they validate your ticket so that you pay no more than $3 per day for parking. when you visit short stay, they validate your ticket so that your visit is FREE. when you visit T-7 which is usually more long-term, they don't validate your ticket at all. it costs $12/day to park in the garage. it costs someone breaking into your car when i park in the resident parking lot where joe is allowed to park for free. when you get discharged from T-7, your discharge papers allow you to get out for free...but who is going to stay parked in the garage for weeks without leaving? it makes no sense. joe's dad tried to get short-stay to validate my ticket, but they refused, since Joe was on T-7. But the weird part is, that in the past when T-7 was too full, Joe stayed in short stay for a few days...and they validated my ticket each day. *sigh* it just makes no sense at all. joe's parents have been finagling creative ways for me to get out of paying the full price, because for all the time i spend here at the hospital, i'd be paying a ridiculous amount by now. surely i'm not the only family member who is with someone on T-7 all the time?

mini random vent.

mini random vent.i have to vent a little bit. keep in mind that this has been a bit of a crazy week, and normally, i hope i wouldn't be so sensitive about this. but this week, i have had so many people share variations of the following, "how are you and joe doing? i'm sorry, i haven't checked your blog in weeks." some of these people told me this in person...the same people who said the same thing to me several weeks ago. some of these people told me over email...uh, couldn't you have spared a minute to check the blog before you emailed? now i don't expect everyone to read our blog (i'm of course talking about the REAL blog, not this one. i don't care if nobody reads this one, because i realize i just post all kinds of nonsense here...). some people are truly super busy. some people are truly computer illiterate. some people don't have regular internet connection. some people don't feel all that close to us, and therefore we don't register in their daily thoughts. i understand that. and i understand that people are not supposed to think about joe every waking moment like i do. and i understand that the fact that people are asking at all shows that they care. and i understand that any inkling of love and support we receive is an incredible blessing because we're not entitled to any of it. but at the same time, i just think...if people really cared as much as they claim to care, wouldn't they try to check up more regularly? i have learned to pick out the polite people from the caring people. polite people almost always get the answer, "oh fine, thank you for asking" when they ask about joe. the others get a more honest answer. that is my vent for today. and that is all it is. just a vent. i'm not actually mad at anyone. really.

Soleil

I'm currently working on Soleil from Knitty.com. I'm really excited and really nervous at the same time. I decided that I have made enough scarves and hats...although, I do love making hats, and I'm getting quite intrigued by "fancier"scarves. Still, I thought it was about time that I jump in and create my first "real" article of clothing. Woohooooo! I chose Soleil because it has no sleeves...it is knit in the round...and the suggested yarn is pretty yarn that works within my self-created budget. I was a very good girl and I created a couple of gauge swatches. This is so that my sweater does not end up too tiny or too big. (when that happens with hats, i can just find a different head for the hat...) I'm still not entirely convinced that the top will come out the right size, but every good knitter must start somewhere. If it works...Joe's mom will be the lucky recipient. Yes, she is like the most perfect lady in the world, and so I must be out of my mind to think that I can knit a top for her. But if it DOES work, even if she hates it and will not ever wear it, she will be so impressed, since she does not know how to knit, and I will get bonus daugther-in-law points. (that was a really long sentence) Oooooooh! If it does NOT work, then I have decided I will frame my creation, because I will still be so proud that I created something that is not a hat or a scarf.
I am almost finished with the lace part at the bottom. I must confess that I'm pretty amazed by myself. Hahaha. I promise I'm not trying to brag. It's just that after a few months of knitting, I really don't think I will ever NOT be amazed by the fact that a pile of yarn can turn into MATERIAL. It is seriously magical. The whole magical process has kept me calm and sane through many hours of waiting in the hospital, and many moments of not receiving the news that we wanted to hear. I'm not even kidding. I think that knitting (& crocheting) ranks right up there with music as being extremely therapeutic. *sigh* Yes, I'm in love with knitting...
I have another confession though. I'm really quite nervous about the day that I pull out my knitting and find that I'm sitting next to a "real" knitter. Although I'm tickled pink with my creations and my techniques, I'm quite certain that I do a million things wrong. Oh well. In music therapy, it's all about the process and not the product. Meaning the goal is not to be a musical genius and create amazingly beautiful music (although, it's a bonus when that happens.) I figure the same goes with knitting. As long as I'm having a blast that's all that matters.
Geez, who knew that I could become so long-winded about yarn? Actually...Joe probably knows.

And here we have my latest creations...

A hat for my brother. It is HUGE...because with little things I am bad and don't bother with gauge. But miraculously it fits my brother's head quite well. So then, I guess I can confess that it was originally for Joe. :)

Hat and blanket for my friend's new baby boy. I crocheted the blanket and knit the hat. I used sugar'n' cream cotton...which in retrospect I should have chosen something nicer and softer...but being budget concious makes your brain different. It got much softer after a washing though.

A purse for big sister of new baby boy.

And another hat and blanket for another new baby boy.

Ten ways YOU can help

In general this is my casual non-serious random blog. But because I think it is important, I'm sharing my helping post from my serious blog here and everywhere.

So often, when friends, families, and acquaintances learn about what we are going through, they want to know how they can help. Every so often, I like to post specific ways people can help. Although I know these posts can get long and tedious for some, I urge you to please read through the list. Everyone is different, and everyone has a different gift. I tried to take that into consideration as I compiled my list. Together, we can make a difference. We really can. And honestly, the best way you can help us is by helping others.

1. Pray. So many of you have been praying for us, and I cannot emphasize enough how much that has meant to us. I firmly believe that each of your prayers, happy vibes, and virtual hugs have kept us strong on days when we should have been weak, helped with the overall smoothness of Joe’s recovery process, and have all around enveloped us with the best of warm fuzzies. I would also challenge you to add one or two other people to your prayer list from our links to the left. Or go to Asians for Miracle Marrow Matches and pray for the patients there. There are too many people who are battling these awful cancers, and each one of them could benefit from the power of prayer.

2. Spread the Word. It is all about spreading awareness. We knew virtually nothing about bone marrow failure, blood cancers, and bone marrow transplants before our journey began. Now that we have been forced to come face to face with the awfulness of MDS, it has challenged us to arm ourselves with information so that we are able to educate others and promote awareness. Go out there and spread the word. Tell people about this list! Getting information directly from a human being can be much more effective than getting information from a flyer.

3. Register to be a Donor. If you are in good health and are between the ages of 18-60, you can register to be a donor. Registration is simple and doesn’t hurt. Just fill in some forms and swab your cheeks. Most people will never be called, but if you are – honey, you’ve won the lottery. What can be more fulfilling than an opportunity to save a life and be an answer to prayer. Click here to get started.

4. Pregnant? Make plans to donate cord blood. If you have already decided to make arrangements for personal storage, that is a personal decision and totally cool. If not, then the umbilical cord and placenta are commonly tossed after birth. Consider making arrangements to donate the blood. It could help save a life! If you will be giving birth in a hospital that is not affiliated with a cord blood bank (for example, Pittsburgh does not have a cord blood bank yet) you may call Cryobanks International, and visit their site for more information. The number is 1-800-869-8608. They accept donations from all over the U.S. You must register between the 28th and 35th week of your pregnancy. You can find more information here.

5. Donate blood and platelets. Patients with cancer often have to have multiple blood and platelet transfusions throughout the course of their battle. Donating blood and/or platelets is a wonderful way of helping to make sure they get the transfusions necessary. Look up your local blood bank or Red Cross for more information.

6. Support a charity.
Marrow Trek – Thursday, April 19, 2007 is Joe’s Day 100! Friday, April 20, 2007, Joe’s college roommate Jim and another college friend Jesse will be starting a 3,000 mile hike over 4 months. The purpose of their trip is to raise money for the Dana-Farber Cancer Institute and Cammy Lee Leukemia Foundation (CLLF), and raise awareness and sign up donors for the National Marrow Donor Program (NMDP). Amazingly enough, the pledges have already exceeded their goal of $15,000. However, Jim always hoped that the goal was a conservative amount. You can still donate. And you can be sure that every penny of your hard earned, tax-deductible donation will go straight to Dana-Farber Cancer Institute or CLLF. Visit the site for updates on their progress.

Aplastic Anemia & MDS International Foundation, Inc. – AA&MDSIF is a wonderful group that provides support to patients and does research related to treating and curing bone marrow diseases. The bravery bracelets that some of you have are from AAMDS!

Leukemia & Lymphoma Society – This is another group that funds education, research, and support. You may recall that our friend Louis ran a marathon to help raise money for the Leukemia & Lymphoma Society.

7. Knit, crochet, or sew. I know that there are many people out there who are crafty. Here are two organizations that are dedicated to turning craftiness into charity. Check out the pages for more information.Project Linus - providing security through blankets.
Head Huggers - providing hats for those who have lost their hair due to chemotherapy or other medical situations.

8. Shop through iGive.com – For all you shoppers out there, you can shop at many of your favorite online stores through iGive.com. Go shopping, and a percentage of your purchase will go to the charity that you designate. CLLF, AA&MDSIF , and The Leukemia & Lymphoma Foundation are all charities that you can choose from.

9. Use GoodSearch.com to Surf the Web – Love to surf the web? If you use GoodSearch.com as your search engine, money will go to your designated cause. I know that you can choose AA&MDSIF as a charity.

10. Contact your congressperson. This message was in the most recent AA&MDSIF e-bulletin.
Dear Friend, On March 6, 2007, Representatives Jim McGovern (D-MA) andMary Bono (R-CA) introduced H.Con.Res. 81, the Bipartisan Bone Marrow DiseaseResolution, to encourage the federal government to fund research and engage inpublic health initiatives that give patients greater access to more treatmentoptions and, ultimately, cures for bone marrow diseases.
The Aplastic Anemia & MDS International Foundation played a key role in drafting, presenting, and securing the introduction of this resolution before Congress.
Now it’s your turn to help!
For this resolution to pass, we need to have a broad level of support from individual Members of Congress. Now is the time to contact your U.S. Representative to urge them to cosponsor H.Con.Res. 81. If you do not know who your Representative is, or need contact information, please access [the U.S. House of Representatives site] and enter your zip code under the heading "Find Your Representative."
For your convenience, we have attached a sample script that you can use when you contact your Member of Congress.
Members of Congress do not cosponsor these types of resolutions unless they hear from their constituents. Spread the word and contact your elected Representative today!
Sincerely,
Sherrie Van Vliet
Acting Executive Director Click here for Script

If you have read this far, THANK YOU. I know for a fact that many of you have been doing your part to help as much as you can. How can we begin to thank you? I want you to know that every time we hear that someone has helped in some way, Joe and I literally jump up and down with joy. It is important that we make every effort to turn something negative into a giant positive for others. We are grateful for each one of you who is helping us with that effort!

You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.
~Matthew 5:14

My new favorite food!

So my new favorite food to snack on is the new Tostitos flour tortilla chips with or without Tostitos creamy Southwestern Ranch dip. YUMYUMYUM!!!!!!! I can't even begin to describe the amazingly wonderful and glorious taste sensation. You must go try it. Now. So good. There is also a creamy spinach dip, but I haven't tried that yet.

Happy day!

boys...you may not want to read this.

i'm just warning you. boys not prepared to be manly men might be uncomfortable with this random posting of mine. just so you know.
~~~
yesterday, i was at target picking up some necessary items for me and joe when i witnessed the second best husband in the pittsburgh area. (joe is the #1 best, of course.) this poor guy was on his cell phone, in front of shelves and shelves of feminine products, patiently asking his wife what she needed.
"what brand do you need?"
"ok."
"heavy, or regular, or...?"
"how many do you think you need? 16...32...?"
"do you need me to look for the light?"
"no, no, no...i mean the pads..."
"ok honey. i love you, see you soon!"
he was just so patient and loving about it, and not in the least bit embarrassed. it was just too sweet.

Baby Livi

The cutest and bravest 2 year old, baby Livi in her Zoe hat!













The purple hat...
...and the crochet hat.

She just might be able to leave the hospital on the 15th. She is currently 27 days out from her cord blood transplant. Keep her in your prayers

I made a few hats for dear sweet baby Livi who recently had a cord blood transplant.

A hot pink hat crocheted with sugar'n cream cotton.















A random wonky pink-kinda-looks-like-a-flower-or-somethin' hat crocheted with prettiest pink Bernat baby boucle and lime Lion Brand Micro Spun.















A cute as a button purple hat knit with Lion Brand Micro Spun.













And a bright orange hat knit with Lion Brand Fun Fur to match these adorable Zoe slippers that Livi has. I, of course, had to model it with my Oscar the Grouch slippers.



















I'm mailing the hats this week, and I really hope they fit. To be honest, I know nothing about head sizes. So, we'll hope for the best!

Some random stuff...

It's been awhile, so here is some random stuff from the past few months...

I've been learning how to play the ukulele. It is really fun. It is kind of similar to the guitar...except that it is so much smaller and cuter, and it only has four strings. But because the fingerings for chords are different, my guitar now feels humongous, and I keep playing the wrong chords. As Joe mentioned, it's like playing lots of ping-pong, and then going to go play tennis.

My most favorite mixing bowl cracked. I loved Mr. Mixing Bowl. He is now in Mixing Bowl heaven. He is survived by Mr. Mixing Bowl Jr. and Baby Mr. Mixing Bowl.

Grab some tissues and vote!

This message is from the colleague of a music therapy friend of mine. The video is not the best quality ever since it's on youtube, but you can really feel the heart behind it. So beautiful. If you get a chance, please vote for them and share the message with others!

The James E. Allen Junior/Senior High School is a school for severely disabled students ages 12-21. I am the music therapist at the school, and we have a wonderful music program. Our school made a video for the National Association of Music Education "Music In Our Schools" contest, and we were selected as a finalist. Please take a moment to visit the following link:

www.menc.org/voteshowcase

If you click on our school picture you can view our video. Please click on the voting page link, scroll down to the bottom of the page, and vote for the James E. Allen Junior/Senior High School as overall favorite video. We are a small school, and we need all the votes we can get. Also, please forward this link to everyone you know so we can get the word out. We greatly appreciate your help.

Thank you,
Tracy Souhrada, MS, MT-BC, LCAT