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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne


The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Tuesday, January 4, 2011

new year...

so we begin another new year.  i'd be lying if i said it's just as easy to be excited at the newness as it is for me to be just blah about it all. i really don't have any resolutions...not that i don't need to make certain changes...bc we all do.  but we have had enough change to last a lifetime, i think.  but i don't call those shots, so we will see what 2011 brings.  i do know ridge is doing so much better. yesterday marked three weeks since his last blood transfusion.  his hemoglobin is still good, 11.1  his platelets were pretty good for him, 58K.  his diapers are good.  but he hasn't been wanting to eat much, so i am worried he isn't feeling well.  time will tell, i suppose.

so many things to think about over the past year.  we have made great new friends through these trials.  we have had "old" friends become more present in our lives through all of this with ridge.  we have had people kind of step away...i don't know if it's because people don't know what to say or if it's because i mean...what the heck are you supposed to do when someone goes through something like this?  seriously.  anyway.  it's been a heckuva year (16 months, but who's counting?).  we started 2010 at the hospital.  i think we spent about two weeks at the beginning of the year, maybe longer, in the hospital. then our life began to be lived in spurts-- a day or two at home, a couple weeks at the hospital, a couple of blood tranfusions (or more..)...then ridge turned one and we got him one vaccination (he was up to date up to that point, but we went slow on his one year vaccines...or planned to).  he went into a huge mega bleed with his prevnar vaccine at 1 yr of age...we didn't know what to do hospital-wise because he'd bounced back from bleeds previously...so we were super conservative....the boys had a bday party in the hospital, ridge felt terrible.  he ended up getting platelets two or three times- which is INSANE for us bc we never give them, and he got 25 red blood cell transfusions, as well as fresh frozen plasma...before we gave steroids..and when we gave the steroids, he stopped bleeding. but he was doing so badly that time. no more vaccines for us.  not for awhile...maybe a long while.  (everybody- read the vaccine book by dr. sears...it isn't anti vaccine, i promise, it is neutral.  and way informative.  i'm talking neutral. it's switzerland neutral).  anyway.  ridge started doing better after all that. 2010 was the time for coming off the octreotide.  i can't remember for sure but i think it was around may or june when he was totally off of the octreotide.  2010 also broke our steroid streak.  after that big bleed with the vaccine, we also found out his port was majorly infected, so we got it taken out....and we have only used steroids once, i think, since then.  he has one, or two at the most, more pentamidine infusions (this is a preventative measure for immuno suppressed pneumonia)....which means, i think, his immune system is pretty much "normal."  I guess.  If he does get sick, of course, he has more of a risk of bleeding than you or I do, so we will still be freaky weird about germs, but ... but...but....I don't even know what to say.  If you are still reading, know that I'm mainly writing this particular post for myself so if this is so super boring, feel free to go away, I won't be offended.  Anyway, Ridge began to majorly turn around in August/Sept of 2010, which was about a year after diagnosis (and we were told the first year would be the worst...it was).  We then began spending about a week (or less) home, and then about the same time in the hospital...so 50/50 was an improvement.  then a week turned into two weeks, and Ridge was fairly consistently going about 2 wks without a blood transfusion.  Two weeks turned into 3 weeks, once....and November only warranted 1 blood transfusion and 1 night hospital stay.  December required 3-4 transfusions and i think about 3-4 nights in the hospital....but again, yesterday marked 3 weeks since his last transfusion...and he seems to be doing well.  I hate how it can all turn on a dime, sometimes w/ no real apparent reason....I'm sure there always is a reason, but we just don't always know what it is....

Brandon and I were talking last night and we are just so ready for this to be over.  It is so taxing to not feel normal.  Yes, we go to the store...we go to the movies sometimes, very very rarely....we go to dinner, almost never...we order in some....but if we GO anywhere, it is a rare rare occasion that Ridge goes with us.  It is rare that Sawyer goes either, bc it is just so irritating when someone gets sick, bc it totally changes our life.  And I'm good about keeping my hands clean, and not touching my face...so I really don't usually get sick.  But it's hard to get a 4 year old to understand that...though mine understands it better than most, I am sure.  It is just a weary feeling.  It is an alone feeling.  I know some people understand....really, I know that.  But it feels so lonely.  And it is crippling when people get upset or offended by our "lifestyle"...bc well....we will do whatever we have to do for Ridge.  We'd do whatever we had to do for Sawyer, as well.  This isn't the life we would've chosen for ourselves...but it IS our life.  So we make the most of what we can.  And I talk God's ear off about all of this....bc while I am completely imperfect, there is nothing I can say that he doesn't already know.  And I don't worry about him spreading germs. :) And I don't worry about what he's going to think of how I feel about this or that regarding Ridge....He can handle my questions, my worries, my concerns, my fears....and how ever thankful I am for always always always being able to pour everything out to Him.

Christmas was much better this year than last.  Last year, dont' get me wrong, it wasn't horrible or anything...I mean, we did get to come home for the first time, on the 22nd.  Then there was a huge blizzard that made it almost impossible for Ridge to get his meds delivered (ALMOST impossible...nothing is IMPOSSIBLE).  Then we had to go to the hospital on Christmas day....Then we had to celebrate extended family Christmases IN the hospital.  But we still had Christmas. This year....we were home the ENTIRE Christmas break-- brandon didn't have to use any of his "vacation" to be at the hospital....he got to be HOME with the kids.  We got to put out cookies (okay...a leftover rice krispy treat) for Santa....The kids got to wake up to gifts on Christmas morning.  We got to read the Christmas story together over homemade cinnamon rolls on Christmas morning.  Brandon's mom, sisters, their significant others, our nephew, Nanny, and Uncle Mike and Aunt Dana, oh and Millie and Joe, all got to see the boys for a bit....It wasn't the same, of course, as what we used to think of as "normal" for Christmas...but who cares?  It was nice being at home, and it was nice everyone being well to be at home with us.  It was nice being able to have company. Because of germs, we really can't do that much.  And I can't tell you the last time I got to cook for guests (I mean, I didn't do all of it or anything...)-- but I mean...I went 5 months without cooking AT ALL!  Much less for guests!  It was good to be able to entertain at our house.  The boys got so many gifts from friends and family...and they really have one more Christmas left from my parents.

Ridge will be 2 in April.  Sawyer will be 5 in June.  I can realistically expect to get to have their birthday party at HOME this year.

So...what a year is behind us.  We aren't the same.  In many good ways...and in many tired, worn out, life is hard, ways....I think I could sleep for a week straight when this is really all over.  And I hope to be doing all that sleeping on a beach somewhere, with our worries so far away it isn't funny.  And I can't wait to be together in one place with all those who have checked on us, rallied with us, cared about us, supported us, prayed for us and with us....somewhere, someday...soon, I hope.  We are aware that our life is difficult to understand.  We are aware that although we are making huge sacrifices, some of you have to make sacrifices too, bc of us/Ridge/Sawyer/whatever.  And to those of you who have been overwhelmingly understanding and supportive...we are grateful.  We are sorry that we are weird.  We are sorry that we are abnormal.  We are sorry that we are high maintenance.  But we are so not sorry that we still have our Ridge with us, after more than one battle for his life....and we will jump every hurdle we have to to keep him here!

So raise your glasses to 2011!  And great things to come!  God is good!

Happy New Year!

1 comment:

The McCoys said...

Dustin always tells me not to worry about things, because in the end we'll do everything we have to do, and it will work out. Not always the way we WANT it to work out of course, but in God's way. Which is ALWAYS much better than we can imagine.

Your strength, courage, and most importantly your faith, inspires me so very much. I know that regardless of all this with Ridge, those things would be steadfast. So it isn't because of his illness that you are strong, courageous, and faithful, however, it is the fact that despite it all, you are strong, courageous and faithful.

I pray for you and of course your sweet family, but I will so pray that you get your weeks on the beach with your family because you so deserve that!

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