The Versatile Blogger Award

Thank you, Lisa (Home to 4 Kiddos) for awarding me with the Versatile Blogger Award! 

The rules of the award are:
1) Thank the giver
2) Tell 7 things about yourself
3) Award fifteen bloggers with the award

Fun Stuff!   Seven things about me... hmmm...

1) I love my Catholic faith
2)I love being a wife, mother and homeschooling mom (well, most days, anyway! ~smile~) I love my family.
3) I am passionate about finding a cure for Shwachman-Diamond Syndrome and Mitochondrial Disease
4) I think God has a sense of humor because I often feel he picked the wrong mom to raise chronically ill kids! Most days, with God's grace, I handle it well.... other's I don;t do so well
5) I love and support the Second Amendment
6) I love gardening
7) I have a passion for cooking (hey-- that's why I started Pattie's Kitchen)

Tomorrow, I will post my chosen winners tomorrow.....

Heading to NYC

This week, I will be attending the 6th International Congress on Shwachman-Diamond Syndrome.  I'll be posting my notes on the SDS blog.  Pray for all my guys...... no one is used to mom being gone.

My train leaves at 3am and I found myself in WalMart searching for another travel pillow tonight around 9 pm.  There is a story about my travel pillow.  You see, I have three boys and one day several months ago, I noticed the pillow was missing from the car.  A month went by and I still couldn't find my pillow.  One day, a friend's daughter noticed this bright pink "thing" in the tree.  Yes, in the tree.  My pillow was in the tree. At first, the boys had no idea how the pillow came to be in the tree.  I had an idea that it was used as a basketball, as it was in the tree just behind the basketball goal. Later, the youngest fessed up to tossing it and trying to make it in the goal, then it went higher and higher until it landed in said tree.

Ten hours on a train....... whatever shall a mom do?  I'm bringing my rosary along for the journey and hope to read a bit.  Of course, I may just sit, stare and enjoy the quiet with no one calling, "Mom, mom, MOOOOOM!"  It has been a long time since I've been away from my people!

I'm excited to learn more about the latest research on Shwachman-Diamond Syndrome, but am not looking forward to the long days of presentations.  I'm hoping the room has a window!  We'll be at the New York Academy of Sciences at 7 World Trade, so I hope to escape to St. Peter's Church during lunch. I was excited to see their Mass schedule.  They have Masses daily at 7 and 7:45 am and at 12:05 and 1:05 pm!  Of course we all know this church because of 9/11 events, but did you know that this was the church were St. Elizabeth Ann Seton converted to Catholicism? 

I'm back to normal after my Cleopatra episode and I'm ready to go to NYC to the International Doctor's Congress.  Hope to get sleep on the train so I can keep up!  

Cleopatra is back

Last week was a whirlwind week.  I felt like the world was spinning as I realized,once again, that my boys actually have a bone marrow failure syndrome (low counts again!) and that the bone marrow biopsies scheduled in August are really necessary. Well, that and the fact that the doctor said no to a trial off of IgG. Cleopatra, Queen of Denial, is my middle name.  Perhaps it is God's grace.  I mean, if we really pondered the diseases and the possible outcomes on a daily basis, I am not sure any of us would cope very well!

Joseph fought his IgG infusion this week.  I hate the SCIG battles.  I hope our old hem/onc weighs in and lets us trial off for the summer.  For now, we continue IgG each week

I'm not sure I mentioned it, but a week ago this Sunday, a man was killed after Mass. He pulled out in front  of a fire truck.  Two of my boys were outside.  Kernersville Man Killed by Firetruck     OCD alert all week.  So far, I have survived.  One day, a fire truck was coming straight at us on a two lane road..... having it pass without any complications seems to have helped my youngest.  Now he says he will only be worries if he is driving.   This past Thursday, a friend of my oldest son was in a wreck that killed two people

 A very sad week and we are praying for all the families who lost loved ones.  I'm coping better this week than last (read: back to Cleopatra mode).  I made it to confession.... and my penance is the hardest penance I have ever been given.  I'm supposed to lock myself in the bathroom/room for 5 minutes of quiet each day this week.  Um... that isn't possible in this house until late in the evening!  What type of sin is it if you don't complete your penance?

My oldest is up between 6-7 and the others are up until 10 or later (asking questions, OCDing, etc). I do walk 3-4 miles a day, but that isn't really quiet-- neighbors talking at times and I like to listen to music. I try to find silence, but there is always banging, ringing, singing, arguing, music, etc going on.  I found silence two days in a row, and then my mind thinks too much!  It doesn't react well to the silence which allows random thoughts to fill my head.

I suspect that my house is like any other house with three noisy boys.  I'm working on my penance this week and I'll let you know how it goes. I need to go lock myself in the bathroom while they seem to be trying to fall asleep.  Maybe I can get to 4 minutes and 30 seconds! Ahh.. see, here it is 10:15 and one of the guys just came to ask me a question........  never alone for long!

L

I didn't think I'd ever hate a letter like I hate the L.  I suppose if we are talking cholesterol, L is a good thing, right?  Today I have the L next to the white blood cell count.  Not that we don't know it, but seeing it is a different matter completely.  It is almost bone marrow biopsy time  and I start wanting to hear things like "normal".  Here we are almost 15 years later and Shwachman-Diamond Syndrome is still part of our world.  Mitochondrial Disease is still here, too.   

We've had many miracles over the years, no doubt. I believe the times we've been close to transplant and then had the marrow change for the better ARE miracles.  I also wonder why God doesn't perform that miracle for everyone. David died last year because he needed a transplant, developed leukemia and did not have a match in the registry (Our Joseph doesn't have a match) -- why was Joseph spared and not David?  Harriet passed away on Good Friday and I wonder why her mom didn't get a miracle.  They had already lost Sarah to Shwachman-Diamond Syndrome several years earlier.  Why did their family have to lose two kids?  Of course, I understand that God's will be done....  but I want His will to be that the children live!  I have hope because I am God's girl and I know that he will do awesome and amazing things if it is His will.

We have a long list of friends who have died from SDS complications and SDS transplant complications.  Of the top of my head, the families I try to remember daily in prayer... Angela, Heather, Jessica O, Christopher, Dan, Tyler, Angelica, McKenzie, Jason, Anna,Colleen, Marc, Brendan, Devin, Melanie, Jessica G, Aley, Beatrice, Nathan, Sarah and Harriett We met so many of these families at conferences, camps and while we are at the hospital (Cincy). 

If you are not on the bone marrow donor registry, please consider joining. www.marrow.org  You could be the miracle that saves someone's life! It is easy to join!  no blood draw!  They just rub swabs on your cheeks!