OK - this covers the last 10 days so hold on!!!

Does anyone know who put the sign on the road where the accident happened to wish me well (I never got to see it because it was up while I was in PCMH/Shepherd but I heard about it)? If so, could you please tell me so I can thank them?

So today (when I started writing this) is Monday May 19^th.  Poor Rowan had a fever all weekend and so he is home with mommy right now. I took him to see Dr. Susan this morning and she made him feel better because he didn’t have to have any shots.  Hopefully it isn’t anything serious but we’ll see how things go in the next few days. He gave Dr. Susan 2 hugs and she gave him two stickers – Batman and Spiderman. I was glad to have been able to take him there and have her see him.

I would like to send a special thanks to Bardia Askari, Steve Berard, and the Murrys for throwing a benefit auction for me at Kate’s Pub in Seattle.  The people at Kate’s were very generous in their donation of the space and Kate and Eric put their tips into the pile as well. This was Steve’s brainchild (as Bardia calls it – that means a lot coming from him because my sense is that he thinks most of humankind is clueless) and the Murrys have always been very generous in spirit and in addition to having contributed tons to the recovery fund, I am extremely grateful to have them in my life. Thanks so very much all of you. I appreciate all of you tremendously.

As few more things I have been thinking about lately…

I was a bit cryptic about the emotional experience at therapy last week but I am going to share this story with you now.  At Christmas, as I mentioned before, we got tons of cards and gifts from so many thoughtful people. One of the cards was from some friends of friends in Seattle. Priscilla told of her experience similar to ours – her husband suffered traumatic brain injury. Aside from that, the point that struck me hardest was her advice that I should mourn my loss.  This has really stuck with me. Only time will heal that wound. It still upsets me when I think about it and I know it will for a long time. I am an active person. I had 2 wonderful pregnancies and enjoyed all associated sensations immensely. Two days before Encsi was born I was mowing the lawn (she liked the pool that mommy built for her and didn’t want to come out and so I was trying to discourage that comfort).  When I see a bike I get grumpy.  I loved to ski (well, try to anyway) either cross-country or downhill. I loved hiking when I lived in Seattle. I want to jump through the waves at the beach with the kids.  Anyway, it is difficult to share these feelings but I hope it will make it easier not only for me, but for those who love me. I hope that when you read this you will think about those that you love and the trials they have been through and understand how it has shaped them. I could be depressed and miserable but not only is there no time because life is speeding on around me, no one I love would want to be with me and that would not be fun at all! I have said this to people and I will probably keep saying it because it makes me realize how futile those emotion are. So if you think that I am strong because of that, I thank you but the thanks really goes to my family. You know my dad, my brother, and Jani aren’t going to allow me to be sad!  Jani calls me “weepy” when I tear up – about anything, even when it is because of something sweet!

Tuesday May 20^th. Staying home again today with Rowan. Poor kid.  For the record, it is not funny when a 4.5 year old nephew tells his nephrologist uncle that his kidneys hurt.  The funny part to me was that if anyone out there knows any 4.5 years old that know where their kidneys are, please let me know!  Anyway, poor uncle Kal has been through enough between his brother-in-law and mother-in-law’s kidneys, his son’s hernia surgeries, and my accident (this is a short list by the way - the real one is much longer) and so I should have know better than to joke with him when he is hard at work!!

Came across this article about clinical trials through Geron using ES cell therapy for SPI being halted. 

http://www.nature.com/news/2008/080519/full/news.2008.842.html

For those of you who are missing Jani because he doesn’t have time to get back to you, please know that it isn’t for lack of desire or thought. This firefighter training is intense mentally (they have a few tests/week) and physically (they are working out everyday), and in addition to taking care of the kids, the dog, the house, and me, he gets a few hours of sleep.  Yet, he never complains and not only that, he smiles and makes us all laugh.  If I haven’t said so before, I will say that I adore my husband beyond words. Truly a spectacular man in so many ways and I feel so incredibly lucky to see his wonderful smiling face every day.

Well, Rowan went back to nap again and so I am going to try to get some work done!

Saturday May 24^th. Well, the rest of the week was better. Rowan was well enough to go to daycare on Thursday and Friday and is totally fine today. When I got home on Friday, Drew from DC was waiting in the driveway.  It was nice to visit with him for the evening (he stopped on his way to visit with family in SC) and he spoiled Jani (with Guinness and Heineken) and the kids with toys (a helmet and words for Rowan and a little wagon for Encsi to pull George around in  -so cute!). Anyway, poor Ensci was fine all evening but around 11pm she woke up vomiting and was sick all night. Probably a rotavirus. She is still sleeping this morning. Poor daddy is cleaning the sheets in the rain outside. Well, tomorrow is his birthday, not today! Neither of them got much sleep and so I see big naps on the agenda for the afternoon.

As for me, Friday was nice at therapy. I got a good work out with weights and doing push-ups with Joanne and then Krista tested me out on some Magic Wheels (a Seattle company!).  Just so you get a feel for how economically challenging this is, these wheels alone are $4500. My chair was around $6000. Insurance coverage for a medically necessary item should theoretically not be an issue. These wheels, if they work well, could really help to save me should pain. I can put them into a gear so that when I am rolling up hill, if I let go of my wheels I won’t roll backward. For all those that have seen me going from the van to the Brody building, you know this would be very helpful. So I am trying out a demo pair for this weekend and we’ll see where things go from here.

A random interjection: Everytime I drive over the overpass I see the red circles where the police made markings at the accident scene. Even though the paint is fading, I still feel a twinge every time I drive past.

Today is Tuesday May 27^th. I know it is terrible not to have put this up before but there was a lot going on. Drew came to spend Friday night with us. Encsi had a bad belly all night that night and kept Daddy awake throwing up. Saturday there was a fox in our yard jumping to pick peaches off our tree (you’ll have to ask to get the full story). Sunday was Jani’s 39^th birthday! Rowan bought him beef jerky and 2 super tootsie pops (which he ate/is eating!).  Terese and Dave came over to celebrate with us and brought a really nice cake with fresh strawberries – yummy!!  The Magic Wheels came off on Sunday – too heavy!!! Also, there is too much play when it is in gear. I don’t think they will work for me. Monday we hung out at home and enjoyed Jani’s first long weekend off! Nice that his birthday fell in the middle of it! I got to see Dr. Reeg this morning and he said my spine has healed well. It was great to see him. I kind of feel the same way about him as I did about Dr. Thompson in Seattle who came from dinner with her family late in the evening, was pregnant herself, and stayed into the wee hours to help me deliver my precious son Rowan (1:57am on 9/13, 2003). There are just some people that, even though they are doing their job, they make you feel as though they really care about you as if you were family. Then I had therapy this afternoon with Joanne and Krista. They are going to leave me to me own devices as of next Friday. I can go back if I need help but they think I am ready to do things on my own. I have really come a long way because of the folks at outpatient rehab and I hope to continue to improve.  Tough road………

Anyway, I have pictures that I have tried to upload and will keep doing so but I can’t see them so I don’t think it is working. Will have to bother Vince soon…..

Hope you all enjoyed a beautiful Memorial Day weekend!

Dear all,

            I hope you have had a good week! It is about noon on Saturday and it has been very busy this week in the Virag household.  Jani has been a bit sore from his rigorous physical training but is enjoying that they take them to different places around town to see how things work in case of a Fire.  The kids are both fluctuating with being sick and so we are trying to help them get better by eating, drinking, and sleeping. Hopefully the summer weather and being outside to get fresh air will help!

As for me, I have been at work a bit each day this week and so I am very glad about that. The lab is busy now – Jess has her comprehensive exam coming up at the end of the month, Sailly is working to get a handle on how we do things, Jon came back to spend some of the summer with us, and Jennifer will likely come to help us out part-time too. Therapy is Monday and Friday each week and so I only get one chance to be in the pool on Fridays but I will do my best to try to get there more. Monday was tough in terms of being emotionally taxing but I could not ask for kinder people to help me adjust to the reality of this situation.  

So many other things to share I don’t know where to start!

I got a phone call from Cindy Bollinger (now Munschy) and heard from Cathleen O’Malley (now Chojnacki) – two women I was good friends with in Ionia since St. Peter and Paul middle school. Cindy and her family only live 2.5 hours away in SC and so I am looking forward to having them visit this summer and meeting their families!

Wishes for wellness and contributions to the Recovery Fund just keep coming. I can’t begin to express my gratitude. Thank you so very much for keeping us in your thoughts.

I was recalling visits from friends the other day. When I was at Shepherd, my friend Dr. Frothy (other know him as Jude) from DC came and spent the weekend with me.  He has a fabulous sense to humor and he set me straight on some thoughts I was having. He did’t bring his blender then but hopefully the next time I see him he will make some magic! I thank Todd and Megan McDevitt for hosting him.

When I got home, Eric and Andrea Soule and their 2 kids Carly and Fletcher came by for a few hours on their way from Kingston to Florida. I have always adored the entire Soule family. They have been a source of love, laughter, and strength for me for many years.

Healthwise, my fluid issues are getting much better. I just had a blood draw yesterday to check things and so we’ll see how well my system is adjusting when those results come back.  Otherwise, there are not really many changes. I still need the medication and, as time goes on, the likelihood that my body will resolve it on its own becomes slimmer. This is troublesome because of other symptoms as well but mostly because I don’t like to put medications in my system and In the beginning, the doctors told me this would likely resolve in about 6 months.  My sense of smell is not back either but that could still take some time.  

Well, I am going to make this one short today because there are lots of things to do while the children nap! I just want you all to know that if I haven’t called or responded to messages, please re-send them. The blog is connected to Jani’s e-mail and so he forward things when he gets a chance but you might have better luck if you try my e-mail directly:

jaivirag@gmail.com

Big love to all!

Oh, and if you have any suggestions on what to spoil my hubbie with for his birthday which is coming up on May 25th (#39) let me know!

Dear friends and family,

First let me day what a wonderful Mother’s Day it is. Friday Rowan and Encsi brought cards they made at daycare with their handprints on them. This morning, Rowan went outside and picked some flowers for me. Then some of our wonderful neighbors came all dressed up before church to bring some tulips and wish me a Happy Mothers day. Really a lovely surprise (I hope they can forgive my bedhead!). Then I went outside with the kids for a bit but it started raining so we moved our play inside.  After lunch when Encsi went for a nap, Rowan and I snuggled in bed, ate popcorn, watched some cartoons, and read a story.  We talked to my mom, Jani’s mom, and Auntie Mervie too and wished all mothers lots of love. Anyway, it is only a little after 3pm and so I’ll let you how the rest of the day goes!

Most of this next part was written earlier in the week…..

I can hardly see the screen through my tears. I am working at home today (Monday) and I decided to take a break to go back to the blog. You might recall that a month ago I got through some but didn’t finish reading past posts before I started writing. I read some of the initial posting that Bob wrote and then read up to my birthday.  The words, descriptions, and thoughts from Bob, Kal, and Jani are truly heart wrenching.  I have always had great admiration for these men for a huge range of reasons but there are no words to express my intense appreciation now.  I am so incredibly fortunate to have such amazing people in my corner. I balled like crazy when I read what Jani wrote about his mom in mid December.  I was glad to laugh though when I read what my brother wrote about ending up at PCMH because of nearly falling out of my chair – the eyes rolling. Bets on when that will be? And I cried my heart out when I read how Khaled described his view of me watching my kids as my first sunrise. So true. Everyday is really a gift with them. Seeing Rowan’s sleeping face next to me and the gorgeous smile on his face when he wakes up to daddy’s voice before he even opens his eyes. When we were outside this weekend it was beautiful and so I was wearing shorts. Encsi (now 21 months) came over to me and looked at the graft donor site scar on my right thigh, pointed at it and contorted her face into a concerned visage and said “ow”. I said yup that mommy’s ouchie and then she leaned in, kissed it, and toddled away to play.  This is the attitude – be tender briefly and then get on with the important things in life!

Anyway, I just wanted you to know that I cry and I get frustrated. Not because I can’t reach something (that has always been an issue being married to a very tall Hungarian!) but because there is so much I want to and need to do and everything either takes forever, is very difficult, or seems impossible….but not for long. I was outside cutting watermelon for the kids recently and found it to be pretty tough, not because of my hands and arms but because of my torso – no abdominal muscle control to balance.  So many of you have commented on my strength and my positive attitude and I thank you because I am working at that and so I am glad to know that it is paying off. It is real. Laughter is incredible medicine. I am so very happy to know that there are so many great people around me and the genuine support and care you all share with me is indescribable.  However, this is a new mode and I am not made of steel (well, except for the stuff I don’t like to think about like the Greenfield filter that I didn’t know about until I saw the foreign object in an x-ray I was looking at with my brother at Shepherd and he explained it to me).  I want to get up and run in the yard after Rowan. I want to go over to the pretty little fig tree Jani planted in the yard for the third time – it came from Houston as a Christmas present in 2004 to 1231 Forest Acres in 2006 and now 1259 Forest Acres in 2008). I want to feel my feet in the sand as Ensci digs around in the sandbox. I want to go pick strawberries and blueberries together (most of you know how nuts my kids are about berries). I want to smell the beautiful jasmine plants that are starting to flower (Mother’s Day gifts from my wonderful husband when we lived in Houston).  I want to go camping with my family like we did last summer – listen to the water over the dunes and fall asleep under the stars….  BUT, I am determined not waste too much energy feeling sorry for myself because I have it pretty good. To be alive for one thing but the life I have is pretty darn good. I try not to think that things could always be worse or better but it is human nature to place ourselves on a continuum.  So what I aim for each day is to slide toward the “better” end of the continuum.  Laps in the pool and propelling myself down Forest Acres will replace running and biking.  I will find other activities to substitute for ones I can’t do anymore.  Suggestions are welcome! As much as I have tried, crafts are not my forté but eventually I will attempt to make more soap and candles. I guess the boxes of photos I have could be put into albums….I am so glad to be digital now!

I got to host Bunko on Cinco de Mayo and that was very special to me. Thanks to my mom for making lots of food when she was here because I pulled out a yummy lasagna to share (I didn’t tell everyone that mom is the chef at the General Wolfe but they said it was very good!), I made some salad, and when we were at Panera on Sunday we bought some of their death by chocolate and caramel chocolate brownies (me and baking have never been close).  It was nice to see those women again and they were all very kind and helpful. For example, Karen fixed me a plate, Marion reinforced my strength (although she won in my house and I didn’t!) and we had a really good talk about coping with adversity, Teresa brought her sunny personality to sub for Barbara and put all the dishes in the dishwasher, Terri and Cheryl made sure that the game proceeded, and Frankie is taking care of the Powerball ticket (keep your fingers crossed!).  Thanks ladies!

I got a wonderful surprise e-mail from a dear old friend, Cathleen O’Malley this week (she has posted comments on this site too) and so I am really very happy to restablish contact.

The middle of the week was just plain busy - between work and therapy, things are moving along!

Friday was interesting. It started off fine, until I got to work. There was a thunderstorm in the morning and so I waited until that passed before I headed to work. When I got to the parking lot, there were only a few spots available and none of them were spots I have used before. So I pulled in, not thinking that the hatched blue areas would vary in size between spots. Well, I tested the lift and it looked close but I thought I would be able to make it out. No such luck. I tried and managed to get myself stuck between the lip of the lift and the car parked to the right. Well, luckily I had me cell phone on me and so I called Laura and told her I was “good but stuck” and asked if she could find someone that might be physically capable of helping me out. So she and Dr. Ray came an rescued me. Not only that, Dr. Ray reparked the van so that I would be able to get in when I had to leave.  Also, as all this was happening, Dr. Lust arrived and said he thought we might be having a meeting outside. Then Dr. Iams arrived and saw us all out there and so he came over to join us.  So much for not drawing attention!  Fortunately it wasn’t pouring anymore. One can only laugh about something like this. It makes for a good story!

Emily and Jason were in town visiting from Boston for graduation and we got to spend some time sitting out on the patio with them on Saturday too.

Healthwise, the intranasal stuff works alright but as I get more physically active, the dose frequency doesn’t seem to cut it so I’m going to work on that this week. My physical strength is responding (well, a little more slowly than I would like but it is aging too!) and so hopefully by the end of the summer I will be independent.  People seem to be surprised that I have been going back to work part time since March and driving since mid-April.  I will continue to strive for physical and mental strength!

Have a great Mother’s Day Sunday afternoon and a wonderful week everyone!

Dear all,

I have to warn you that these posts are probably going to be long for a while.  Partly because I like to think about what to write and how and partly because I write some and then I don’t get back to it for a day or sometimes more.  So I hope you’ll bear with me!

I have to tell you about this week because lots of things have changed around the Virag house. Then I will go back in time for a spell and lastly I will update you on my health.

Wow it has been a busy week but pretty good all in all. Monday morning we rose early so Jani could make sure all of us were ready for the day without him. Rowan and mommy were a bit grumpy because we don’t like to be woken up but daddy and Encsi’s energy is contagious and so we forget and move on quickly. Daddy took the kids to daycare. Rowan is going through separation issues but once he gets into things, he has lots of fun with his new friends. Encsi, well, she is like her daddy – she will talk to anyone, anytime, about anything and entertain herself and others with whatever is on hand.  Mommy stayed at home in the morning and took care of some things and then drove herself in the fancy van to therapy in the afternoon. I really enjoyed going to outpatient to work with Krista, Penny, Dave, and Joanne.  I got to go in the pool Mon, Wed, and Fri this week so me and my circulatory system are happy campers!

Tuesday morning mommy went to work for a bit to greet Sailly, the new addition to our lab.  It is good to welcome a kind woman with great capabilities. In the afternoon, Teresa came with me in the van to help me pick up Rowan from daycare and we took him to his orientation at Falkland, the school he will be attending in the Fall. I got to do the parent part and Teresa accompanied Rowan to the classroom with some of his future classmates to play and learn some of the school policies and practices. Anyway, it was a good day.

Wednesday I scared Jani a bit because I charged my phone and popped it into the bag underneath me, not realizing that it had turned off. So he couldn’t reach me and I was busy all day and didn’t use it so I didn’t know. It was a productive day though! Working at home on a manuscript and then therapy (pool again!)

Thursday, I saw the family off, had some coffee, got myself together, worked on the computer for a bit and then drove to work and parked with my new accessible parking pass. Got the best spot possible – my lucky day!

Friday, I went to work in the morning. In the afternoon, I went to therapy to work with Penny in the pool (hurrah! On both counts!).  Then I went to an appointment to meet with Dr. Reeg only to find out that it was supposed to be the day before. I was pretty disappointed because I was very much looking forward to seeing him again (this is the man who operated on my spine).  Now I have to wait until May 27^th.  After that I went to pick up the kids for the first time. There was a girl there who was kind enough to put Encsi in her seat and away we went in mommy’s new van! When we got home, both kids were able to get out through the front passenger door and then they waited for mommy to come out in her chair.  

So all in all, it was a busy week, full of “first tries” but fortunately, without incident!

A few things I was thinking about recently that I want to share and when I was at Shepherd:

Jani gave me a few of his shirts to wear, mostly because I didn’t have the arm mobility to pull many of mine over my head. I was glad about that especially when he wasn’t around because it gave me strength and peace of mind.

When the family would leave the room at the ends of visiting hours and go to the elevator, Rowan would always run back to give me extra kisses. One time, he looked at me with those big tearful brown eyes and whispered “mommy, if you move over just a little I could fit into bed with you.”  Obviously there was not one single time I didn’t cry for hours after they left to drive back to Greenville.

When Mandy and Lori (from Wolfe Island/Kingston, Ontario) came to visit me in January, their flights got messed up because of inclement weather and so, because of my therapy schedule, I really only got to spend a few hours with them. However, it was really good quality time. Being with them, talking about life stuff, laughing and crying with them, and seeing pictures of Mandy’s little Rosyln…all of it really made me feel so lucky to have such great friends and still be integrated into their lives. I think you all know about the benefit they held for me at St. Margaret’s on Wolfe Island. There were so many people there and the money raised is so much appreciated I can’t begin to tell you. I look forward to getting up there one of these days and I was thinking that maybe I should just sit on the ferry all day one day and hug everyone I can get to!

There were lots of people who visited me there and I met some really nice people while I was there so I will come back to it often.

My health: Things are better with this intranasal stuff but I still have to watch things pretty closely. My right shoulder has its good and bad days. The therapists want to keep me for 4 more weeks (my discharge date was May 9^th) to see if they can help with that and work more on strengthening and mobility.  This would be good. I am getting better at transferring by myself but for some things (like the pool and my shower chair) I still need help. They tell me that one day I will be able to just pop myself over instead of using my sliding board. Yikes.

One last thing. You know what I am really glad about? That when people I know see me, they aren’t afraid to bend down and hug me.  It means a lot.

Hope you’re having a great weekend everyone! Today is my youngest nephew Kellan’s first birthday. Even though I can’t be with him to celebrate, I am so glad to be here to see the day!