It's super late. Or super early. I don't know. I can't sleep. I was awake a little longer than this last night, too. Last night I was working/sewing....tonight I was crafting some more...watching some old 90210...and looking through old photographs on the computer...back when things were normal.
I suppose it's...well, normal, to reminisce. I know everyone does it. But...for us, at least I think, it is different. Honestly- I don't remember what it was like to be normal. I don't remember what it was like when we had just Sawyer and we were able to load him in the car and "just" do anything- go to the zoo, go to dinner, go to church, go visit family. I certainly have no idea what it is like to do that with two children. It isn't like I'm missing that-- I seriously just do NOT remember how that feels. I look at pictures of other families with their kids, and I think "We've never done that. Ridge hasn't ever done that. They look so happy. WHY don't we get to have that?" I seriously, really, literally do NOT remember that feeling, the feeling that I know was there two years ago.
It's too late/early. So normally, it is easy to just trudge on and block these thoughts, but you know how it gets when it is late or early and your mind is so tired it is sort of clear/easy to see things. Everyone is asleep and I am the only one even remotely stirring in this house right now. It makes me so sad that things aren't normal. That I can't just take my kids to go do whatever bc of illness, Ridge's lack of some vaccinations, Ridge's central line. I haven't cried a lot of tears over all of that in a long while, maybe never, because I just haven't thought about it a lot. But tonight it makes me sad. I mean, really...REALLY, our life is so not normal. And I know, normal is overrated, blah blah blah. But seriously. Some things are normal- I can type about what the kids got for Christmas, or how the boys have been sleeping in Sawyer's bed the last couple of nights, together, and it has been so cute....or how I have mountains of laundry piling up or how the fabric store didn't process my order correctly...there are things in our life that ARE normal. But the big heavy ugly cloudy thing that is NOT normal is always there. Even when we aren't realizing it, it is still there. And I hate it. HATE HATE HATE it.
I'm not trying to be all "gloom and doom." I'm just telling you how it is; and this IS how it is. I know there are truths and promises and that we will come out of this and one day get to be normal again. The thing is-- normal....will I even know how to be?
It isn't fair. I'm not going to leave you with a bunch of encouragement and things to make you feel all good about yourself or your circumstances here, although I know those words exist. I know what is true. But even though Shadrach, Meshach, and Abedngo escaped the fiery furnace unscathed, surely they felt the heat. Even with the mouth of the lion snapped shut, surely Daniel trembled just a little. And while I have so so much to be grateful for, and while I know these trials are only temporary, and while I know the Lord has a greater plan and is doing a fantastic work in our lives through this....some days I just desperately want to be NORMAL. And it just isn't fair. It. Isn't. Fair.
- alisha
- 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.
Saturday, January 29, 2011
Friday, January 21, 2011
you might not understand me here unless you read it all...and some of you still might not understand me even then.
This has been circulating all over Oklahomans' (and others' I'm sure) FB the last few days:
And first of all, before you read anything else, I will just say three things straight out: 1) I am pro-life, in every situation possible. 2) With reason, some people will not like the first thing I just stated, and that is okay- bc truth be told, I have NOT been in every situation possible. However, 3) when I'm all finished with this post, the main objective of it really has nothing to do with abortion. But I wanted to preface the post by letting you know I am all in pro-life, so you can either stop reading now...or keep reading...or skip to the end where I try to tie my point into this post. Because as you read, there will be times I perhaps sound like I am on a side I am not, so I want it to be clear from the get go, if there are sides, the one I am on.
I grew up knowing of James Lankford, the Senator speaking in the video, from somewhat of a distance. As a senior in high school, I actually got to know him because he was our interim youth pastor. He is a wonderful, wonderful man, and if I could've voted for him, I would have.
So this video, which I saw being circulated all over FB, prompted a discussion between BDawg and I at the lunch table on our snow day on Thursday. Thankfully we had that snow day, not just for this conversation, but for the fact we'd basically been in the hospital for the entire week before and I was so glad to be home (thanks to a big crying meltdown I had, the doctor had compassion on my blithering self and let Ridge come home). ANYWAY, when the video finished playing, BDawg said, "that was a really good speech."
I didn't exactly know what to say. I mean, hands down, IMO, it WAS/IS a great speech, bc I am of like opinion as this Senator. But for the sake of discussion, BDawg and I sometimes play the devil's advocate and try to talk things out. So, I started out with my first thought, which gets me sad a lot of times when we get into discussions similar to this one...As Christians...we expect the world, and the USA specifically, to become a nation under God again. And while the urging and pleading and evangelizing should never cease, I get sad because the Bible makes it pretty clear that as Christ's return approaches, our world will veer further and further from the Truth. And then, I said something about how in my mind, regardless of the circumstance, I can't imagine terminating a pregnancy. We talked about rape cases. We talked about cases where the baby would be born with something wrong with him/her (um...hello, if you haven't figured out what we'd choose in this situation you've never read our blog!). We talked about cases where a mother finds out she has cancer or something terminal during her pregnancy. We tried to cover a lot of these "extra" type cases....and then I got to thinking about some of the people I know who are pro-choice. People I like. People I have taught in school. People who have taught me many things. People who proclaim to be Christians. And we got to talking about how some Christians think about the pro-choice side of things as being pro-abortion....which, in my opinion, it is not. Anyone who would say they are pro-abortion....um....WHAT? That, I believe, is just asinine. I think what stirs people up on the pro-choice end of things is that they find it infuriating that anyone would take away a woman's right to choose to do whatever. And I get that-- don't get me wrong- I think abortion at any and all stages of pregnancy, regardless of how the pregnancy occurred, is not not not okay. But I understand getting spit fire mad about taking away a right to choose- not necessarily the right to choose abortion. Change it to something else. The right to choose...(whatever). So i GET that side of it. However....because I believe abortion is wrong wrong wrong. If life is defined at conception, which I believe it is...and if abortion is illegalized....we aren't taking away a right to choose, are we? A woman could still CHOOSE to have that done (albeit somewhere else, or illegally in the U.S.) just as a woman or man can still CHOOSE to do any number of illegal -- or even legal!- things. Making abortion illegal doesn't strip someone of their right to choose. Making drugs illegal hasn't removed anyone's right to choose to do drugs. And I know, all the pro life people might be nodding their heads right now and all the pro choice readers might be shaking their fists (or something else). I'm just spilling my thoughts- it is okay with me if you don't agree with them or dislike them...I don't feel like I'm attacking anyone here, and I hope that I don't sound as if I am. Because most certainly I have never been in a position to have to make this decision, but I can tell you that if I were, even as hard as the decision might be to proceed with a pregnancy in illness, or a pregnancy I didn't ask for bc I was raped, etc etc. I do know the decision I would make. I know this, because as Brandon and I talked this out/argued with each other for the sake of just trying to see both sides, although we are on the same side, and although I think it is sad that there even ARE sides...and while I wrestled with what I KNOW I believe and with understanding some of the "other side's" views....This question was posed at our kitchen table that snow day...."Well...we can see it however we want, but as Christians, what is our responsibility? To do what we think is right? No. To do what God says is right."
Now. I already knew where I stood. And I understand some of the points on the side on which I do not stand. But here's the thing....about abortion, or ANYTHING-- drugs, abuse, rape, stealing, underage drinking, things more or less severe in human eyes than anything I've listed...here is the thing...EVEN AS CHRISTIANS, in today's world, so many of us do things, make decisions, that we think God will be okay with. "I'm okay with this, because I feel in my heart it is the right thing to do." "this is a decision I can live with." "I think God will be all right with me making this decision." WHAT? Where do we get this line of thinking? Am I NEVER guilty of this? I'm sure I am guilty of this sometimes. But the truth is, THIS IS WRONG. Who are we to say, "it's okay bc I'm okay with it, so God's okay with it." What. The. Heck. No. IIIIIIIIII can be okay with something because God is okay with it. It does not work the other way around. I can adjust MY life because God has requested something of me. I should not expect God to conform to my belief system. God IS my belief system. His Word, even the parts I don't always like, ARE my belief system. It is ridiculous to think I can pick and choose certain parts of the Bible to be applicable and certain parts to not be. Now...some nitpickers out there will say, "well does that mean you can't....." and smack down something Old Testament style that really no one practices anymore. I'm not here to smack people around- I don't know all the answers. I know if you read the context of things, and if you know when things are written and why they are written, and know that a lot of those laws in the OT are just that- the law then, the "right" way to do things...BEFORE Jesus came to abolish the law and set us free....well then while those writings are valid for what they are, and true for what they are, and insightful for what they are, I am not slave to that law, bc I am set free by Jesus Christ.
And because I am set free by Jesus Christ, the Lord is my God. I am not His god. I do not get to make His word fit MY life, even if I want to, even if that is easier. As Christians, we need to rise above what is becoming social Christianity and become more, become what God intends for us to become. If you call yourself Christian, you call yourself "little Christ." You can't proclaim that and mean it if you aren't doing what Christ says. If you want to believe whatever you want to believe, that is completely and totally your choice, but it is entirely inaccurate to profess a belief system to be Christianity if it is not even following what God says is true/right!
So the real question is-- "What does God say about that?"
And so there is the point of this post. I'm sorry it had very little to do with Ridge, bc I know that is why some of you read here. I'm sorry if I have offended anyone, although I know that is to be expected, because my intention was just to share something I have not been able to shake. And just to wrap up the abortion spill, from my end of things, here's one thing I think God says about life at conception, if not before:
To Jeremiah, he writes:
"Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."
Why would I assume if he knew Jeremiah prior to conception that He did not also know me prior to conception? And for that matter, all unborn babies? AND FOR THAT MATTER, what about the girl/woman faced with this horrendous decision of what to do in such an unexpected situation....God knew her before she ever existed. He knew the situation she would be in. And while He can do whatever He chooses, I do not believe God necessarily causes bad things to happen-- but He does KNOW they are going to happen, and He allows us to go through horrendous experiences because if we belong to Christ, God causes ALL things to work together for the good of those who love Him. (Romans 8:28).
And...Psalm 139, beginning in vs 13:
And first of all, before you read anything else, I will just say three things straight out: 1) I am pro-life, in every situation possible. 2) With reason, some people will not like the first thing I just stated, and that is okay- bc truth be told, I have NOT been in every situation possible. However, 3) when I'm all finished with this post, the main objective of it really has nothing to do with abortion. But I wanted to preface the post by letting you know I am all in pro-life, so you can either stop reading now...or keep reading...or skip to the end where I try to tie my point into this post. Because as you read, there will be times I perhaps sound like I am on a side I am not, so I want it to be clear from the get go, if there are sides, the one I am on.
I grew up knowing of James Lankford, the Senator speaking in the video, from somewhat of a distance. As a senior in high school, I actually got to know him because he was our interim youth pastor. He is a wonderful, wonderful man, and if I could've voted for him, I would have.
So this video, which I saw being circulated all over FB, prompted a discussion between BDawg and I at the lunch table on our snow day on Thursday. Thankfully we had that snow day, not just for this conversation, but for the fact we'd basically been in the hospital for the entire week before and I was so glad to be home (thanks to a big crying meltdown I had, the doctor had compassion on my blithering self and let Ridge come home). ANYWAY, when the video finished playing, BDawg said, "that was a really good speech."
I didn't exactly know what to say. I mean, hands down, IMO, it WAS/IS a great speech, bc I am of like opinion as this Senator. But for the sake of discussion, BDawg and I sometimes play the devil's advocate and try to talk things out. So, I started out with my first thought, which gets me sad a lot of times when we get into discussions similar to this one...As Christians...we expect the world, and the USA specifically, to become a nation under God again. And while the urging and pleading and evangelizing should never cease, I get sad because the Bible makes it pretty clear that as Christ's return approaches, our world will veer further and further from the Truth. And then, I said something about how in my mind, regardless of the circumstance, I can't imagine terminating a pregnancy. We talked about rape cases. We talked about cases where the baby would be born with something wrong with him/her (um...hello, if you haven't figured out what we'd choose in this situation you've never read our blog!). We talked about cases where a mother finds out she has cancer or something terminal during her pregnancy. We tried to cover a lot of these "extra" type cases....and then I got to thinking about some of the people I know who are pro-choice. People I like. People I have taught in school. People who have taught me many things. People who proclaim to be Christians. And we got to talking about how some Christians think about the pro-choice side of things as being pro-abortion....which, in my opinion, it is not. Anyone who would say they are pro-abortion....um....WHAT? That, I believe, is just asinine. I think what stirs people up on the pro-choice end of things is that they find it infuriating that anyone would take away a woman's right to choose to do whatever. And I get that-- don't get me wrong- I think abortion at any and all stages of pregnancy, regardless of how the pregnancy occurred, is not not not okay. But I understand getting spit fire mad about taking away a right to choose- not necessarily the right to choose abortion. Change it to something else. The right to choose...(whatever). So i GET that side of it. However....because I believe abortion is wrong wrong wrong. If life is defined at conception, which I believe it is...and if abortion is illegalized....we aren't taking away a right to choose, are we? A woman could still CHOOSE to have that done (albeit somewhere else, or illegally in the U.S.) just as a woman or man can still CHOOSE to do any number of illegal -- or even legal!- things. Making abortion illegal doesn't strip someone of their right to choose. Making drugs illegal hasn't removed anyone's right to choose to do drugs. And I know, all the pro life people might be nodding their heads right now and all the pro choice readers might be shaking their fists (or something else). I'm just spilling my thoughts- it is okay with me if you don't agree with them or dislike them...I don't feel like I'm attacking anyone here, and I hope that I don't sound as if I am. Because most certainly I have never been in a position to have to make this decision, but I can tell you that if I were, even as hard as the decision might be to proceed with a pregnancy in illness, or a pregnancy I didn't ask for bc I was raped, etc etc. I do know the decision I would make. I know this, because as Brandon and I talked this out/argued with each other for the sake of just trying to see both sides, although we are on the same side, and although I think it is sad that there even ARE sides...and while I wrestled with what I KNOW I believe and with understanding some of the "other side's" views....This question was posed at our kitchen table that snow day...."Well...we can see it however we want, but as Christians, what is our responsibility? To do what we think is right? No. To do what God says is right."
Now. I already knew where I stood. And I understand some of the points on the side on which I do not stand. But here's the thing....about abortion, or ANYTHING-- drugs, abuse, rape, stealing, underage drinking, things more or less severe in human eyes than anything I've listed...here is the thing...EVEN AS CHRISTIANS, in today's world, so many of us do things, make decisions, that we think God will be okay with. "I'm okay with this, because I feel in my heart it is the right thing to do." "this is a decision I can live with." "I think God will be all right with me making this decision." WHAT? Where do we get this line of thinking? Am I NEVER guilty of this? I'm sure I am guilty of this sometimes. But the truth is, THIS IS WRONG. Who are we to say, "it's okay bc I'm okay with it, so God's okay with it." What. The. Heck. No. IIIIIIIIII can be okay with something because God is okay with it. It does not work the other way around. I can adjust MY life because God has requested something of me. I should not expect God to conform to my belief system. God IS my belief system. His Word, even the parts I don't always like, ARE my belief system. It is ridiculous to think I can pick and choose certain parts of the Bible to be applicable and certain parts to not be. Now...some nitpickers out there will say, "well does that mean you can't....." and smack down something Old Testament style that really no one practices anymore. I'm not here to smack people around- I don't know all the answers. I know if you read the context of things, and if you know when things are written and why they are written, and know that a lot of those laws in the OT are just that- the law then, the "right" way to do things...BEFORE Jesus came to abolish the law and set us free....well then while those writings are valid for what they are, and true for what they are, and insightful for what they are, I am not slave to that law, bc I am set free by Jesus Christ.
And because I am set free by Jesus Christ, the Lord is my God. I am not His god. I do not get to make His word fit MY life, even if I want to, even if that is easier. As Christians, we need to rise above what is becoming social Christianity and become more, become what God intends for us to become. If you call yourself Christian, you call yourself "little Christ." You can't proclaim that and mean it if you aren't doing what Christ says. If you want to believe whatever you want to believe, that is completely and totally your choice, but it is entirely inaccurate to profess a belief system to be Christianity if it is not even following what God says is true/right!
So the real question is-- "What does God say about that?"
And so there is the point of this post. I'm sorry it had very little to do with Ridge, bc I know that is why some of you read here. I'm sorry if I have offended anyone, although I know that is to be expected, because my intention was just to share something I have not been able to shake. And just to wrap up the abortion spill, from my end of things, here's one thing I think God says about life at conception, if not before:
To Jeremiah, he writes:
"Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."
Why would I assume if he knew Jeremiah prior to conception that He did not also know me prior to conception? And for that matter, all unborn babies? AND FOR THAT MATTER, what about the girl/woman faced with this horrendous decision of what to do in such an unexpected situation....God knew her before she ever existed. He knew the situation she would be in. And while He can do whatever He chooses, I do not believe God necessarily causes bad things to happen-- but He does KNOW they are going to happen, and He allows us to go through horrendous experiences because if we belong to Christ, God causes ALL things to work together for the good of those who love Him. (Romans 8:28).
And...Psalm 139, beginning in vs 13:
For you created my inmost being;
you knit me together in my mother’s womb.
14I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Before one of them came to be!
All the days of my life, of your life, of her life, of his life, were known, before one of them even came to be.
So. What does God say about {whatever it is you are facing/doing/deciding/needing}?
Sunday, January 9, 2011
sing sing sing
new photos of the boys, from Christmas, over here. fair warning- there are new photos of my new crafts, as well.
today, we went to church, all 4 of us, and i love it when we are able to do that. ridge is getting less shy around people so it is hard to contain him, which is scary bc of illness/etc, but is fun that he is growing up. he hasn't had a blood transfusion in three weeks and 3 days. he can sign the words, "more" "yes" "thank you" "please" "all done" "eat" "drink"and i think that is all. of course he can shake his head no, and wave bye bye. he still isn't really talking. he can say mama when he wants to, and can try to repeat what we say, but doesn't really talk on his own.
anyway, at church, we sang this song today (video is also posted, I wasn't sure if you'd rather listen or read...or neither). IF IT'S NEITHER...skip over, bc this isn't the end of this blog post!!!
How Can I Keep from Singing by Chris Tomlin
There is an endless song
Echoes in my soul
I hear the music ring
And though the storms may come
I am holding on
To the rock I cling
How can I keep from singing Your praise
How can I ever say enough
How amazing is Your love
How can I keep from shouting Your name
I know I am loved by the King
And it makes my heart want to sing
I will lift my eyes
In the darkest night
For I know my Savior lives
And I will walk with You
Knowing You'll see me through
And sing the songs You give
How can I keep from singing your praise? How can I ever say enough, how amazing is your love? How can I keep from shouting your name? I know i am loved by the king, and it makes my heart want to sing
I can sing in the troubled times
Sing when I win
I can sing when I lose my step
And fall down again
I can sing 'cause You pick me up
Sing 'cause You're there
I can sing 'cause You hear me, Lord
When I call to You in prayer
I can sing with my last breath
Sing for I know
That I'll sing with the angels
And the saints around the throne
how can i keep from singing your praise how can i ever say enough how amazing is your love how can i keep from shouting your name a know i am loved by the king and it makes my heart i am loved by the king and it makes my heart i am loved by the king and it makes my heart want to sing
i can sing
So anyway...that's good stuff. Not that I don't know that song and not that it wasn' t a great comfort during the worst of Ridge's times...but while the praise that falls from your lips is so sweet in those times of intense crazy horrible trouble like the past year and a half has brought...the times we thought Ridge could die....those times, and the unbearable times of back and forth to the hospital...anyway, of course that song was great. Because it is true- even in the darkest of times, we knew we could praise the Lord. He had carried us through other trials, he would carry us through this one with Ridge. And his provision was sweet throughout all of it, and still is. And while I think back on all of that when I sing those words, even still, it is a different sweetness to be able to sing it NOW. It was a desperate praise when I would hear and sing that song months and months ago. It is an overwhelming and grateful praise when I hear or sing that song now. Praise from the same lips, the same heart, the same person, to the same God, but it is still so different.
I had a lot on my mind that I wanted to type about and share today. I thought of it all earlier. I don't remember a lot of it now.
So I will leave you with that. And maybe I will have more time in 2011 to blog-- but always remember, no news is good news! Lots of news could be good news too, but for sure if you aren't hearing from me here at the blog, things have to be going pretty well!
alisha
today, we went to church, all 4 of us, and i love it when we are able to do that. ridge is getting less shy around people so it is hard to contain him, which is scary bc of illness/etc, but is fun that he is growing up. he hasn't had a blood transfusion in three weeks and 3 days. he can sign the words, "more" "yes" "thank you" "please" "all done" "eat" "drink"and i think that is all. of course he can shake his head no, and wave bye bye. he still isn't really talking. he can say mama when he wants to, and can try to repeat what we say, but doesn't really talk on his own.
anyway, at church, we sang this song today (video is also posted, I wasn't sure if you'd rather listen or read...or neither). IF IT'S NEITHER...skip over, bc this isn't the end of this blog post!!!
How Can I Keep from Singing by Chris Tomlin
There is an endless song
Echoes in my soul
I hear the music ring
And though the storms may come
I am holding on
To the rock I cling
How can I keep from singing Your praise
How can I ever say enough
How amazing is Your love
How can I keep from shouting Your name
I know I am loved by the King
And it makes my heart want to sing
I will lift my eyes
In the darkest night
For I know my Savior lives
And I will walk with You
Knowing You'll see me through
And sing the songs You give
How can I keep from singing your praise? How can I ever say enough, how amazing is your love? How can I keep from shouting your name? I know i am loved by the king, and it makes my heart want to sing
I can sing in the troubled times
Sing when I win
I can sing when I lose my step
And fall down again
I can sing 'cause You pick me up
Sing 'cause You're there
I can sing 'cause You hear me, Lord
When I call to You in prayer
I can sing with my last breath
Sing for I know
That I'll sing with the angels
And the saints around the throne
how can i keep from singing your praise how can i ever say enough how amazing is your love how can i keep from shouting your name a know i am loved by the king and it makes my heart i am loved by the king and it makes my heart i am loved by the king and it makes my heart want to sing
i can sing
So anyway...that's good stuff. Not that I don't know that song and not that it wasn' t a great comfort during the worst of Ridge's times...but while the praise that falls from your lips is so sweet in those times of intense crazy horrible trouble like the past year and a half has brought...the times we thought Ridge could die....those times, and the unbearable times of back and forth to the hospital...anyway, of course that song was great. Because it is true- even in the darkest of times, we knew we could praise the Lord. He had carried us through other trials, he would carry us through this one with Ridge. And his provision was sweet throughout all of it, and still is. And while I think back on all of that when I sing those words, even still, it is a different sweetness to be able to sing it NOW. It was a desperate praise when I would hear and sing that song months and months ago. It is an overwhelming and grateful praise when I hear or sing that song now. Praise from the same lips, the same heart, the same person, to the same God, but it is still so different.
I had a lot on my mind that I wanted to type about and share today. I thought of it all earlier. I don't remember a lot of it now.
So I will leave you with that. And maybe I will have more time in 2011 to blog-- but always remember, no news is good news! Lots of news could be good news too, but for sure if you aren't hearing from me here at the blog, things have to be going pretty well!
alisha
some photos....
i haven't posted just an in general, this is what we're up to post in awhile. so here are some photos for you.
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!
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!
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