musings of life and laughter...composed between loads and loads of dirty laundry (which we will attempt to avoid airing here)...
stories of trials and faith, of falling and rising, and of the steadfast arms of our strong, strong God.
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.
Well, it finally happened. I'm still not sure how we just stepped out and went for it, but we did. Last Saturday, around noon, BDawg and I got in my car...went to the post office...filled up the gas tank (not at the post office)...and hit the road for Tulsa. And drove all the way there (not that it's far away or anything, I just mean we didn't turn around! We really went all the way there!) We checked in to our hotel (this part was sort of a surprise. I didn't know exactly where our hotel was, but I did know a little about it). Here is where we stayed:
The Ambassador Hotel is a restored old living space-- it was originally used, I believe, for oil field workers to be able to stay semi-long term back during the oil boom. It has 55 rooms, a fantastic restaurant (we had the lamb and the venison...and a delectable chocolate torte....). It was restored by the same people (team? contractors? business?) who restored the Colcord in downtown OKC, but the Ambassador is restored in a more traditional hotel style, while the Colcord is restored in a more modern design. Both are incredibly nice. We don't get out much (this was our first overnight date in over 2 years, because of Ridge...and I can probably count on two hands, maybe one, the number of dates we've had at all in the last 2 years)...but when we DO go out, my husband knows how to do it up right. He always picks somewhere fantabulous to stay, he lets me order whatever I want for dinner, and the icing on top of the torte for this trip was my surprise Valentine's gift I'd been given a few days prior to this weekend :
I'd been hinting about this concert for months. Tickets were all snagged early so they were sky high. I told you my husband does things right in this department. He got us a pair of tickets, while I was totally resigned to the fact that we weren't going (and I was okay with it). But after we got checked in to the hotel and got all ready for the concert and headed down to the fantastic dinner...we then loaded up with the hotel's driver and he took us to the Brady, which was the perfect venue for the Mr. Taylors. I am a big fan of both James AND Ben, so this was fantastic! The Brady holds about 2500 people I believe, so it wasn't overcrowded really (I mean, IT was because it was full, but there weren't 18445723486 people there). I wasn't sure how the concert would play out set-wise, because I didn't know if Ben would open and James would follow, like traditional concert order or what...but it turned out to be the greatest possible set up for someone who loves both of those Taylors! They sang pretty much every song together, some of James' biggest hits, as well as some of Ben's songs. Ben took some solos on James' songs, James sang with Ben, etc etc- every song was performed together by the father son fantabulous duo. They each did one solo song- Ben right after intermission and James right at the beginning of the encore. We had fantastic seats and everyone was so nice. Everyone behaved appropriately (scene back to a Michael Buble concert we went to....a few WAY OVERLY inebriated high school girls were in front of us and they ruined the entire performance because they didn't know how to act. seriously. have some class, people.) The show was about 2 hours, including the intermission, so that was a bit of a bummer for me, because I figured the show would be that long after the opening act. So since there WAS no opening act it would've been cooler if they performed a little longer....but...I will try to not to be greedy (although...it isn't like those tickets were cheap). Anyway, it was a super fun time! We had to wait what seemed like forever on the driver to pick us up but we finally made it back to the hotel out of the cold. The next morning we went to breakfast in downtown Tulsa and then headed home to see our boys, who were napping, but were glad to see us (especially Ridge, who had somewhat of a difficult time without mamamamamama).
Here are some pictures. They all look the same, but I promise they are not all taken at the same time :) I have some video but haven't uploaded it yet. I'd go back to this concert in a second-- this was the first time Ben and James have toured together, Tulsa was the first stop on this tour, Ben is only touring with James for the first month or so of shows, and they performed a few of James' songs that had never before been performed in concert. So it was a night of firsts, and it was neat to get to be there. It might be forever before we get to do something like that again, but it was a great weekend! I know some of the pics are blurry...I forgot to turn my flash off on a few of them (don't worry- I did get in trouble for it!)
Ridge got blood this week. At the infusion "clinic" or room. Which meant he arrived around 9 AM and got to come back home around 430 PM, which is still a long day. But much better than arriving at 9 AM and the blood not even getting there until 3 or 4 PM, bc THAT has happened before, more than once. Which means we have to stay the night.
I am planning on doing a little packing and tidying up around here today if the kids cooperate....bc tomorrow, the hubs and I head out to see James Taylor. Everyone can be excited for us, I'm excited!
I have had a heck of a week, to say the least. Ridge is doing well, Sawyer is doing well other than we are totally in the back talk/rebellion stage (take 1 of it I am sure, I know even if it dies down, it will be back one day, as a teenager or whatever). Nothing new with BDawg. Nothing majorly new with me, just encountered some ridiculous stuff this week. You know those things that just make your jaw drop, or make you think "Are you KIDDING me?" Stuff like that. Always super to deal with.
So at the culmination (I hope) of all of THAT crapola, I got this email...which I had read before but had not really READ well because I wasn't to that place yet, that place where I'd understand it. And I can honestly say some of you probably won't understand it, simply because you haven't been in this position (and I am thankful that you haven't). But this is a little bit of a glimpse into how our world has felt, and still feels so often. It is a strange place to be, sometimes, our new world...and it is even stranger when you feel ready to step into your old world but don't exactly know how, and are met with some hesitancy and opposition and obstacles to that. Some things you expect or at least they don't surprise you, but other times it feels like you are fighting a senseless battle, one that you didn't ask for.
Anyway, here is a small glimpse, of how our life sort of feels. It is terrible and wonderful all at the same time, some days. I have seen miracle after miracle and a God more faithful than any human, and I know that He has yet to fail us, and He will never fail us. He has provided above and beyond all expectation, sustained our life, even if on some days we feel we are barely surviving. He has been so faithful. And if He has carried us through the valley of the shadow of death, I'm here to tell you, there is nothing my God can't do- even in the face of opposition. And that is something no one can take from us. He is the same. Yesterday. Today. Tomorrow. and Forevermore.
So...here ya go...our little 2 year vacation, and somewhat permanent one, to "Holland"
"Welcome to Holland"
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
not really. i know some people who clean out their fridge and make stew out of whatever's in there...we don't do that over here. i don't have the stomach for it. especially not today. i don't know if i'm sick or something didn't settle right or yuck yuck yuck i have no idea but my tummy is notttttt happy right now. and while i am sure none of YOU would dare ask, there are some who might...no, most definitely the tummy being upset is not a code term for "there's a baby in there." there isn't. i would know. yes, i would. tummy ache...therefore, the blog post. what else am i supposed to do just sitting here?
so i will share our leftover soup with you- everything you've missed since the last blog posting.
1) new design. i'm not finished, bc well, i took the background from blogger's templates, and while i like it, i'm also a bit of a free spirit and have an insane desire to create things. so i need to put my spin on it. nothing fancy. just something i at least tweaked a bit. and with a bit of a facelift comes my desire to want to blog more...but wanting something and having it aren't the same...so we shall see. but sometimes wanting something and having it actually are the same...like
2) the james taylor/ben taylor tickets my husband surprised me with on Valentine's Day. that's right people...t minus 6 days and we'll be in floor seats/aisle seats, living a dream (i know, not the loftiest of aspirations....but you can't go wrong with james...and, frankly, his son ben is just as talented, IMO).
3) i just got back from a weekend away with five of my seven closest friends...it was completely unexpected and the circumstances of our "reunion" were not good to say the least...the mother of one of my dear friends was killed this past week in an accident...a tragedy no one could expect...and while i knew her beautiful mother less well than my other friends, the times i had been around her, she was always smiling and warm...but i do know my friend, well. and she too is most always smiling and warm...and as beautiful in every way as her mother, i am sure. so we had a little reunion. it was sad, it was happy, it was fun- it was a celebration of liz's mom, and it was also a celebration of other new life- i got to meet the two newest additions to our circle of friends-- babes born this winter....and how sweet they are. i also have been listening to "A Thousand Splendid Suns" on CD (I listened to it most of the way there, and most of the way back, and am not quite finished yet. a must read...er, listen, in my case.)
stomach...you have to stop this.
4)i am somewhat behind on sewing. thrilling news, i am certain.
5) i am ready to repaint my kitchen- including, but not limited to, the walls, the cabinets, the hutch, the kitchen table. for reals. spring break, get ready.
6)we have been working with ridge some on language devlopment. the other day when brandon walked in the door ridge laughed and said "da da" which he doesn't usually say (i know, he's old enough to talk, but he isn't yet-- for those of you who don't check in regularly...i am aware he is not "on track"...but a year ago, two years ago, this part of his future was the least of my concerns).
7)sawyer is gearing up for spring t ball. we shall see how it goes.
8) i've been rocking my grocery shopping using coupons. yesterday, small recap, i got two jumbo packs of pampers diapers...two tubs of pampers wipes...coffee filters, two toothbrushes, ponytail holders, dish soap, and two cans of pringles for $14...and left CVS/Walgreens with $7 credit to spend next time...so you could say I got that stuff for $7, instead of $14. sometimes being frugal is so thrilling i just want to throw my hands up and scream like i'm on a roller coaster. except that doesn't sound great on this stomach.
I am so ready for the sick season to be over and to head to church again, and head to the zoo, and maybe even the park. We have a meeting with Ridge's primary physician over spring break..there, we will definitely be discussing the option of removing Ridge's central line. THAT can totally happen, as far as I am concerned. The boy needs a good 8 hour scrub down from missing almost 2 years worth of normal baths!
So. I like those leftovers better than the ones that are probably in my refrigerator. Which means I better go make some supper, bc these words aren't going to look very scrumptious on a dinner plate.
Okay, I'm about to head out the door to go buy a few groceries, so this will be (short) if that is possible.
Ridge: will be 2 in April. Is doing great! His hgb is low 10s right now, so close to being a need for transfusion. He hasn't had a transf. in almost 4 weeks (wed. will be 4 weeks). He has bled twice in the last four weeks without needing to get blood- THIS IS NEW FOR US! TWICE! We are one step closer to that stinking finish line, AAAAAAMEN! He got a new haircut and looks so grown up. A good friend of mine evaluated Ridge the other day and was able to tell me as far as his understanding/cognition goes, he is at least 6 mos ahead of his "age"....however, as far as his speaking goes (if you didn't know he couldn't talk like the rest of us can, he can't yet. still baby talk/babbling/incoherent, but can clearly get his point across!)-- anyway, his speech is about 8 months behind. This is to be expected with his hospitalizations. So no worries, but we do have a few things we can do with him at home and in a few months when he is 2, we can discuss reevaluating him if that is necessary. So...he's smart! Supa smart, I say, but just can't say what he's thinking, so he gets frustrated. Anyway...it was a great visit and put my mind at ease.
Sawyer: Is getting bigger every day. He is a good helper and he pushes all the buttons all the time-- arguing, questioning, wondering, why-ing...I know it is a phase and it will pass and one day I will miss it, but today, I wish I could miss it! But he is so sweet even in this phase.
nothing really new with B Dawg and I. We went out for Valentine's on Friday night. it was good to go on a date, it was good to not rush and sit at dinner for 2 hours or so and not care that we were just piddling. We ordered whatever we wanted (uh, if you don't go on a date for a really long time you can pull out all the stops on a splurge now and then!). It was good.
I think that's about it. I've thought of so many things I wanted to post over the last week or so but I just have not had time to do so. I'm sorry! I will try to do better- even if just for me, because I like to use this blog as kind of a journal/record for myself anyway. Although I did just get an amazing new planner that I'm going to try to use similarly-- for basic facts, like hemoglobin stuff...not for the emotional side of things. I will save that for you all to read here :). I do want to post in the near future about some money saving things we have been doing around our house, because they might be something you want to do too, even if not for financial reasons!
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.
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:
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;
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!
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!
I have really been slacking off on the whole blogging thing. I truly truly enjoy blogging, and most definitely needed this habit desperately as Ridge was doing so badly. Tonight, while I am waiting on the ever famous Pioneer Woman Cinnamon roll dough to be ready for the next step (this is my first time making these famous puppies! i'm so excited i'm almost drooling!).....I thought I would write a bit for you. I'm not sure how many of you keep up with us, but I know some of you like updates, so here's a short one:
1. Sawyer-- growing so much, reading, being a great friend to Ridge and a great help around the house. He is getting too big for me....he understands things, good and bad, that I don't think he is old enough to understand. He is truly not a baby anymore. And so this is sad. It is also happy, because he is becoming a wonderful young man.
2. Ridge-- is a mess! He looks like his daddy and is as ornery as his daddy (who is as ornery as HIS daddy...who probably was as ornery as HIS daddy...Cary men have a mischievous streak in them! and it is to be admired!). Ridge has figured out how to dance-- if we sing or play music, he dances....which to him, is spinning around and around in circles. It's quite hilarious. He has had 4 blood transfusions, I believe, this month. He was sick for the first 3 and we aren't sure what was up with the 4th one. His diapers look good though and his hemoglobin today was very good. His platelets have been running low (30,000ish, and usually he is about 50,000)-- so prayers for an increase there would be great. The 30s aren't a big deal, I just worry if he begins bleeding he will not have very many platelets to help him out, and we reaaaaalllllllyyyyy don't like to transfuse platelets as they irritate his condition.
3. Bdawg-- is off work for one more entire week and that is WONDERFUL for us all. He got a dehydrator for his birthday and has been making lots of deer jerky. Some has been grooooosssss but some has been very tasty! He had his 31st birthday this month...
4. Me-- I had my 29th birthday this month and I plan to live this year like the 20something I still am. Not a lot else is new with me. Oh, but exciiiiting about this birthday this year: My sweet friend Emily delivered her baby girl, Nora, on MY birthday! Nora and I share a birthday now, AND she was born weighing in at the same weight, and measuring the same height, as Sawyer did when he was born! How neato!
Christmas is tomorrow. The boys are receiving a boatload of gifts, because some fellow friends/coworkers/community members were very giving to our boys again this year. We didn't expect it and are so appreciative. I'd already done a little bit of shopping for both kids. This might be one of the biggest Christmases they ever have, as far as "getting" goes....I can't believe how good people are to us! We have saved many of the gifts to use for birthdays (both boys have spring birthdays), which will be nice, because not only did this generosity help us out with Christmas, but it is going to help us out with birthdays as well. I am overwhelmed at the love people have for our kiddos! Sawyer is very into Santa this year, and Ridge is pretty muchso too...except sitting on his lap at Bass Pro was NOT fun for Ridge. He screamed and screamed! See:
Oh well. We are also talking a lot about baby Jesus and how Christmas is the celebration of the birth of Christ. In fact, I overheard Sawyer telling Ridge how to pray the other night. He said, Ridge, you just say, "Dear Jesus, I want a (i forget what he said). Amen. But you can say whatever you want. I mean, it doesn't matter you can tell Jesus whatever you want to say." So...he started out teaching Ridge to pray to Jesus like Santa (which I know isn't right, but if you overheard the conversation, it WAS funny), but he finished it off by teaching Ridge you can talk to God about anything, you can say whatever you need to say to Him (which IS right). Sawyer is a great big brother.
I'm starving. I'm tired. And I have a toy to build tonight, so I will sign off. But not without remembering where we were this time LAST Christmas Eve. We were home. We had been home about 48 hours. Ridge was still bleeding, and was on Octreotide 24/7. It was the night of the Oklahoma Blizzard (INSANE!) and our home health delivery guy wasn't able to get Ridge's Octreotide to him. A coworker of Brandon's, and a lifesaver, for sure, got in his 4wd on Christmas Eve and went and found the delivery guy, got our meds, delivered them to us (but first took the delivery guy back to his office), then went around helping other people he knew were stranded in the blizzard. And the next morning, Ridge went to the hospital again. Last year was horrendous-- not just Christmas. We have come so far, Thanks be to God. Only by His grace, that is for sure. Tonight, our thermostat seemingly quit. Another coworker of Brandon's, a wonderfully nice man, came by and he and his son figured out the problem and got our heater up and running again. On Christmas Eve. Thank you, Lord, for people who are willing to help people out. May we all be willing to do what we can to help a "neighbor." Since Christmas is really about giving, anyway! And we are so indebted to those two men, as well as many other people who have helped us along the way, and mostly to our Saviour, who many years ago came to earth, as a sweet baby, and grew to be a perfect, sinless man, who has given us the salvation and freedom we never deserved in the first place. That is Who we are mostly indebted to...and because of some of you, His love has shown even more brightly upon us this last year and a half.
maybe it is. it sure used to be. and maybe maybe it is again. i have some Christmas spirit this year. last year, not to say i was in a funk necessarily...but, it was just difficult last year to have much Christmas spirit. This year, we have put our tree up...we have put lights on the outside of the house...i have hung the stockings and bought the wrapping paper and all the gifts and have made two different batches of Christmas cookies...I have listened to Christmas music. We have watched the Grinch...we have watched Elf...we have watched Christmas Vacation. We have the nativities out....we have our advent story board thingymabob my pal Crystal gave us all ready to go and we opened the first "box" today. It is a fun way to count down to Christmas.
Sawyer understands about Santa this year (yes, we practice the "Santa" idea). It is bound to be a great Christmas. Hopefully we will be home! The odds of that happening, I'd say, are pretty good....
I have been hesitant to say it so far, but I'm going to tonight....even though Ridge is running close to his transfusion level....he has made it 18 days so far without needing blood....and his diapers have pretty much been perfectly normal that entire time...and....he only had ONE blood transfusion the entire month of November. And ZERO hospitalizations during November, other than the one night he had to get blood (and then he really only stayed the night bc he got blood late in the day and it is ridiculous to go home in the middle of the night.)
Our house is FREEEEEEEEEEEEEEEEEEEZING. I might not be able to finish this blog post simply bc my toes and hands are like ice and I need to go to bed and cover up with a gerjillion blankets. BRRRRRR.
Ridge has a stuffy nose, as do Sawyer and I. Ridge has been coughing a bit so I am worried if he doesnt' get over this soon (he does not seem to be ill, just maybe a cold, or possibly even weather change stuff, I am really not sure), that he will begin bleeding again. Maybe he won't, but it is a natural thing to worry about with him/his disease.
That's really all there is to report....we had Thanksgiving, the four of us, at our house. I made a turkey, as well as many of the trimmings....and I made two pies. I'd never cooked a turkey, or pretty much any of the stuff I cooked that day. But it was all good. And while we missed being with family- I can say two things with certainty: 1) it sure beat being in the hospital and 2) it's way less stressful to cook all that stuff than lug two children and all their belongings to the car and out of town. I didn't imagine the 2nd thing could be true at all, but it most definitely was true. Kids make traveling so difficult.
hmmm....I just don't know if there is a lot more to tell tonight. I'm sure that makes you happy-- because that means not a lot is going on, and that is GREAT news for us!
Ridge is walking walking walking everywhere. He still is not really talking so I am working on some sign language with him. He can sign "more" very well and very consistently. He can sometimes sign "Thank You" and we are working on "eat," "drink," and "be merry" "please." I'm sure some of you did/do sign language with your kids, but I'm gonna be honest here- I always though that was WEEEEEIRD before....but I don't anymore, bc even though it is only two words so far that Ridge can sign, it is a way for him to communicate with us, and he is at the age he HAS to be able to communicate, bc it is just too frustrating for him to not be able to tell us what he wants. So, I will apologize for thinking it weird before. Because it most certainly is not weird. It is wonderful being able to see him talk, even if it is only two words!
Sawyer is reading. Yep, reading. I'm bragging. I am. But he is READING! I could never in my whole life teach young kids. It is way too stressful, and teaching kids to read is just not something for which I want to be responsible. However....I have loved seeing Sawyer's progress from working with him at home! We've learned all our letters and most of their phonetic sounds, and he struggled a LONG time putting the letters together sound-wise...but he's got it now. It's so neat! He also knows a lot of memory verses which is way cool to hear....we are currently working on John 3:16, and while most of you know that verse, we don't always remember that it is really a pretty lengthy verse....I am impressed how quickly he retains memorization type things.
I have lot of little things like that to share with you but I am literally shaking like crazy here because it is so cold. Time to turn up the heater and crawl under those covers!
well. thanksgiving is upon us. i am up super late tonight because i can't sleep. bdawg's going hunting in four hours and i will take ridge duty at that time...and be tired all day i am certain! if only i could sleep! i'm just not tired at all. i should be doing something productive. like blogging. :)
okay. so thanksgiving is upon us. well....what do you have to be thankful for?
i am thankful. i am thankful that we are in a much different place than this time last year, in so many good ways. i am thankful that God has given us wisdom in certain arenas of our life, and that while things aren't always fun, God has protected our family from major illness this year. I am thankful for a 4 year old who knows more memory verses than many adults. I am thankful that he has finally learned how to write and pronounce most of his alphabet (I say finally, not because he is late in doing this, but because we have worked very hard on it!). I am incredibly amazed that he is starting to read. I am thankful that he is such a great helper at home. I am thankful that Ridge is consistently going about two weeks without needing a blood transfusion. I am not sure if this is bc every two weeks he seems to either be getting teeth, or having a runny nose, etc that causes him to bleed some, or if the disease is just kind of on a two week cycle. i do know that two weeks between transfusions is a big deal. that means in a month we are for sure getting single digit transfusions (usually anywhere from 2 to 6 in a month). i am thankful for an 18 month old with more normal looking poop than bad looking poop. this time last year i blogged a lot about poop. i don't have to blog about that as much anymore. and i am thankful for that.
i am thankful that the Lord has blessed us in so many ways. he has blessed us with a community and a church family that loves us deeply. he has blessed us with people that have not forgotten us-- in either word or deed or both. so often we have people tell us they are praying for us, or people call/text/email/send cards saying they are praying for us. or people give generously above and beyond what we would consider needs-- but what they consider to be something they need to give to us. God is good. so so good. he has blessed us with people across the board who might not understand everything about ridge's disease or all the weird rules we impose on our family to protect ridge's health-- but even if they don't understand, they still behave understandingly. of course there are times we struggle in this department because we know it is a frustrating situation we put friends and family in sometimes. but we are thankful for the understanding we are shown, because we know this is just a season, and it will pass. i am thankful for good friends who allow me to lay all my burdens down, lay it all out there, and they just listen, or pray for me, or offer advice if i am needing it, but they do not judge or chastise or say i'm weird. i am thankful for my friends-- be they near or far, family by blood, by marriage, or by self-proclamation :)
i am thankful that the first time i cook a thanksgiving meal, it will just be the four of us enjoying it. because it might get really messed up. :) i'm kidding on this one, because it is insanely sad to think we will be with no family on thanksgiving day. because of travel being far away, and overexposure of ridge to a lot of people/possible illness, we just do not feel like that is the right decision this year. hopefully next year things will be even better. but i am thankful that this year, it appears as of now, that we will be HOME on thanksgiving. and that beats the hospital, even if we are alone.
i am thankful for a husband who truly is a helper. i am thankful for this because i know he is a rare gem. :) i am thankful that though, most assuredly, this last year has made building our relationship ridiculously difficult, bdawg and i are still standing. the other day, i was reading a blog i follow regularly, and a line written regarding marriage, especially in the event of a very ill child, was something to the effect of this: "we will get through this. we will make it. we might make it by the skin of our teeth, but we will make it. " (that isn't a direct quote, but if you want a direct quote, head over to MckMama's blog). I'm not trying to make things sound more grim/bleak than they are-- i'm just telling you that you don't know how difficult it is to even feel like you know your spouse (or your children for that matter) when all you are doing is making sure your baby stays alive and is getting the care that really only you know how to provide. so i am thankful this year that even with the semi-hell we have walked through the past 16 months, i still have someone to hold my hand and wipe my tears away. because no one else could do that as well as bdawg, bc no one else understands. and for that, i am thankful.
i am thankful for the light. the light at the end of our tunnel. it is small, and some days it flickers instead of shines, but it is there. and we are slowly slowly walking towards it every single day. and i am most thankful, regarding this light, for the day that we reach it. that will be a day that we don't even know is happening the day it happens....but a few days, weeks, months later, we will look back...and we will realize all this darkness-- the turmoil with illness/bleeding/transfusions/central lines/fevers/vaccinations, the turmoil with MLT ruling our life and leaving our normalcy in the dust, the turmoil with splitting time evenly between a "special needs" child and another very special child, the turmoil between finding a normal marriage, i could go on and on and on...we will look back, and we will see, that it is all gone. it is behind us. and we will be thankful.
because above all else, God has been faithful. we may not have always been so, but He has not changed. He has seen us through our darkest days. He has carried us when we needed it most, and He has most assuredly rejoiced with us as things continue to improve. And if darkness shall rise up again before we are finished with this, he will carry us again. He has said it is over, and I will trust that. I will be thankful for that. We have a lot of things that we could grumble and complain about, and sometimes we do. I know there most definitely is someone out there facing a darker night in their life than we have faced in ours. So for the most part, even if we want to, we try not to complain. Because the Lord has proven himself faithful to us. And the petty things that once filled our lives with worry seem so .... petty. We have been given new perspective. And while I hope I don't complain about those petty things when all of this MLT/turmoil is behind us...there are some days I long to be able to only have that stuff to complain about again. I am thankful, though, for new perspective. For realizing it isn't such a big deal if I have to go to the grocery store 3 times in one week...because at least I can go to the store instead of eating hospital food. It isn't such a big deal if I can't afford to buy those new jeans or this or that for whoever in my household...because at least i'm at home even thinking about buying that stuff. It isn't such a big deal if the dishes mount and the laundry piles and i am stressed to the max trying to get things done, because at least i'm in a place where i can do those things and not stuck in a hospital room. it isn't such a big deal that my bathroom is dirty or my floors need vacuumed, because at least i'm home enough to get those things dirty. i could go on. perspective. i am thankful for a new one. no matter your story, whether it be like ours or much much different-- there has to be someone out there who is hurting more, who is more desperate, who is needing the hand of God to just reach down and snag them right up out of their pit. God is faithful. He knows what he is doing. And he will prove himself over and over to you and me if we will allow him to. So....think. What do you have to be thankful for?
May the greatness of our Lord be at the forefront of your mind this Thanksgiving week. Be blessed.
it is getting late and i am just sitting around wasting time. so i figure i could do something somewhat worthwhile and offer an update. our updates are pretty much the same every two weeks, bc ridge's MLT seems to be cycling in two week spurts.
Tomorrow will be two weeks since his last transfusion. He started having darker stools on Wednesday, yesterday they were better, today they were even worse than Wednesday. I anticipate he will need blood tomorrow (Saturday) but I am not sure. This stage is difficult because you don't feel at peace with what's going on but you also don't want to rush in to the hospital when it's too early for something to be done. Frustrating.
I was speaking with a friend of mine from Alabama about her little girl, who also has MLT, and who has gone 16 weeks without a blood transfusion (she is a couple of months younger than Ridge). It looked like she would be needing to get blood this week/weekend, but the lab was wrong and so, hopefully, she will make it another week-- another sixteen maybe!-- without needing blood again.Anyway, we were talking about gratefulness...and the lack of it too. It is so difficult to appreciate the time you have at home when things flare up like this. It is also so difficult to NOT appreciate the time you have at home in comparison to the time you have MISSED at home. We are so incredibly grateful to be in our home. I am greedy and want to be here all the time because of all the time we have missed. I want to be able to go buy groceries as needed, and to go to church every week and then some, and to not feel like if I go do something without the kids that I am wasting that time bc sometimes it feels that way-- like, I have this day at home. If i go shopping/to dinner/to the movies (which none of those things barely EVER happen, but still!), am I wasting this night? I could be at home! It is very hard to space out time for yourself/your friends/etc because in my heart I know I need that, even WANT that, but there's that nagging fear in the back of my mind that we won't be home much longer so I need to enjoy time at home. It is a very conflicting position to be in. So back to my discussion with my friend-- anyway, when she thought her daughter might need blood she said she wanted to be clear that she was not ungrateful for the sixteen weeks-- she is very grateful. i said the same about our two weeks-- i am so so grateful. but again, i am very greedy about our time at home. i want to be home, not in the blasted hospital. so it is hard for me to say , "THANK YOU, LORD for these two weeks." Because as the diapers change, what I am saying is, "NO, LORD! Fix it! Stop it! We don't want to go back yet!" I hate this feeling. I hate not being able to just take a breath and say, "it's okay. we've had our time at home, we will go stay in the hospital for a bit and be back for a couple of weeks." But I can't say it! That isn't how I feel! I don't want to go back ever ever ever! EVER! I probably won't even want to go to ANY hospital! EVER! For anything! (Of course, I will. But I won't WANT to!) And I beat myself up, but I just don't know if it's even bad that I feel that way. Of course I am grateful and thankful that the Lord has brought us to where we are. I am not turning my head or heart or whatever to what He has done for us and in Ridge. I am very aware that He has saved my son's life and He has brought some normalcy back to our life. I am very aware of his provisions for us. I am also very aware that we are home two weeks at most and then we are back in the hospital. And those two weeks at home are still spent constantly monitoring POOP. And monitoring blood levels. And giving medicine. And flushing the central line. And setting up home health visits/dressing changes/medicine deliveries. And filling prescriptions. And germx-ing hands. And praying we don't get sick. And setting up clinic appointments for checkups/labs/infusions of pentamidine/whatever whatever.
Sigh. It's just a lot to do!
I think this attitude is prevalent in most of us. We struggle with whatever our circumstance, until that circumstance changes for the better (or the worse I guess). But when it changes for the better we think we will be forever grateful and never gripe about this or that again, but then we do. Or we find something new to gripe about. I'm not really griping, I'm just sick to death of living like this! So that is probably griping-- but seriously-- who would want to do this DAY AFTER DAY AFTER DAY!?!?!? I will press on-- bc really, what else ya gonna do? I get that. I'm okay with it. I just want it to be done. Finished. Over. FOREVER. FOREVVVVER. like this much forever:
yep. like that. So I'm praying that I can say Thank You a lot more... i say it about a billion times a day when the labs and levels and poops are good. But it is really difficult to have the same attitude when they aren't. I still say it, and mean it, but I chase it down with "But can You please make it stop? For longer than two weeks???!?!?"
So in other news, our church family housed a benefit concert for Ridge this week. Blake Bolerjack and Soul'd Out Quartet were the stars of the show. All four of us were able to attend. It was great to all get to be there. Some family members were able to come, and some friends, and lots of people from our church. Several people who were unable to attend also made private donations to help Ridge's medical bills. Our pastor was able to bring the total donations by the house today, and again, just as before with our community's generosity, other communitys' generosity, etc etc etc, I was floored at the provision of God. The amount of money itself was humbling-- and of course hospitals are very proud of themselves, and find themselves very able to take an amount we find immense and apply it to something very small...which is why families like us need the love and support of family/friends/community/church family...anyway-- again, the amount of money that was given was humbling...but thinking upon who all was in attendance at the concert, and upon the private donors' names...and knowing who many of you are and that you have your own struggles....that is humbling. That in your love for us, and in your love for the Lord, and in your knowledge of our struggles and a desire to be used of God to help meet the need of getting Ridge, and our family, through this. Gosh. I can't even type about it because I can't make sense of it in words. The outpouring of love that we have felt from so many people we know is indescribable, but this time I want to recognize our church specifically because the love that we have been shown from so many of you who don't even know us well-- and so many of you who do know us well-- it is just unbelievable. God is good. And please know that not for one second do we doubt his hand at work in our lives-- through a lot of things-- but this time, through you.
Thank you so much!
Things you can pray for this weekend/week:
That Ridge would stop bleeding, quickly. We will still probably need blood, but that doesn't mean we have to keep bleeding!
That the cycles would start being longer than two weeks!
That Ridge would start sleeping better, in his bed, through the night, so that we can get more rest. We are exhausted. Sawyer is in a "scared" stage, so if Ridge is asleep, often Sawyer wakes up and then the rest doesn't get had anyway. So pray for both boys' sleeping patterns.
The proceeds from this concert will go towards funding Ridge's medical bills. Our church, along with Blake Bolerjack and Soul'd Out Quartet, graciously arranged all of this. We love our church so so much!
If we are all home, we are planning to be there in person-- of course, Ridge will be at a distance, and we will be praying we avoid sickness-- please pray that for us, as well. He is teething still and as he cuts teeth, in the past, he has bled. We are wanting him to make it through this tooth with little to no incident. Join with us in praying for an uneventful tooth cutting! We hope to be at the concert, and if that happens, we hope to see you there!
Tickets are $10 in advance and $12 at the door. A love offering will also be taken at the concert, and the church has received several donations from people unable to attend-- donations for which we are incredibly grateful!
two babies in their mother's arms, and two babies in their momma's bellies...and contrary to the appearance of this photo, there is NOT a baby in MY belly. suck it in, alisha.
We had so much fun and it was sad to leave, because it is a rare sweet treat to see one another. We were sans one other friend who was on her way back from afghanistan....so while it was a great time together, we wish Lu could've been there too!
Saturday while I was gone, Ridge started bleeding and had to go back to the hospital. We didn't know why he was bleeding, other than he was still cutting some teeth. So he got blood a couple times, the bleeding stopped Tuesday, and we went home. Tuesday in the night, he spiked a fever of 101-102. So we had to take him in (anything over 100.5 warrants an ER visit for US, because Ridge has a central line and it is always assumed fever means line infection.) Line cultures were drawn, peripheral cultures (IV stick) were drawn...blood was given...tylenol was given....and we just waited it out. He didn't seem to have any infection, there was no growth on any of the cultures. But...being there this week meant we missed out on some of the fall festivities in the community. Thankfully...we are always at CHILDREN'S hospital...so the $$ i spent on costumes this year did not go to (as much) waste. Friday the hospital had a party (Sawyer didn't want to go...so we didn't)...and they had trick or treating in the halls...the kids both donned their costumes (one wasn't as willing as the other....) and we got lots of goodies (not so much candy bc they didn't really hand out candy at the hospital)....all in all, it was a good time.
Saturday, I had some errands to run, so Sawyer tagged along. First stop: EARLY VOTING! I didn't know you could do that until this last year or so! Much less stress (um, last presidential election I went on my planning period to vote and it ended up taking me THREE HOURS to get through the line!)...however, it meant I had to go to El Reno for this general election (early voting has to be done @ the county election board)....it just so happened, El Reno's trick or treat through the businesses was that day (I don't know the technical name, sorry!)...so when I got Sawyer out of the car, he said, "WOW mom this is gonna be FUN!" Sorry, kiddo, THAT isn't what we're downtown for :( . But I got my vote on, and we headed to finish up our errands. While all of this took place, Ridge was getting blood and getting cleared to go home. He developed a rash during the transfusion. It was assumed to be a reaction. Benadryl was given. He seemed fine.
So last night, we were all home, and we went trick or treating! First time for both of the boys!
Buzz Lightyear...and an alien from Toy Story. See those two pumpkins? there is a third one on the ground by the bench. Stupid me left them out last night, and after trick or treating, only one of the three remained. Dumb kids, stealing my pumpkins.
So this morning, Ridge still had the rash. He feels fine, is afebrile (no fever), so the rash was just....annoying (to us, not him). So I got my research on (bc I think parents need to be involved in their kids' health-- I will never again take at face value what a doctor tells me WITHOUT first and second doing research myself. I don't think this is OCD or weird, I think this is GOOD PARENTING. Doctors can be wrong. Doctors can be at a loss sometimes. It's okay if I research something, ask about it, and am wrong/get laughed at/people think I'm weird. Because sometimes....like today...I might've been weird, but I AM RIGHT!) I thought Ridge probably had Fifth Disease. It's just a virus, in the same type of family as other rash viruses like Chicken Pox, Roseola, Measles, Hand Foot Mouth...It starts with a fever/stuffy nose/red cheeks (check, check, check). Then, a rash appears on the tummy/back/feet/hands...but at that point, the child is no longer contagious. Most everyone has had fifth disease...and once you have it, you are immune. You haven't had it? You might have. Not everyone even knows when they had it/if their kids had it, bc not everyone shows symptoms. It's a mild virus that lasts not long at all, there is no treatment bc it is a virus, and the rash might hang around a few weeks, but isn't usually problematic and certainly isn't contagious (again, once the rash appears, no longer contagious). Brandon had put a call in to one of our GI docs, the one who'd seen Ridge all week. He shared the symptoms, answered a few questions, and also asked if it could be Fifth Disease, bc I wanted to know. The doctor said I'd done good research bc that's what she was going to suggest. :) Yes, I am proud of myself. All this to say-- PLEASE, parents, NOT bc your pediatrician/doctor isn't good, bc I am CERTAIN he/she is WONDERFUL, but bc YOU ARE THE PARENT-- please please please be actively involved in your child's healthcare. Ask questions at visits, DO RESEARCH/READ UP ON THINGS beforehand, and after a diagnosis/visit, do more research. Make sure you agree-- bc sometimes, doctors are wrong. Sometimes they just don't know bc there aren't enough symptoms yet. They are human. Wonderful humans who take great care of our kids, but they are still human, and your child isn't THEIR responsibility. Your child is YOUR responsibility. Knowledge is power and you have the ability to read up on things and be educated and involved in your child's illnesses/well checkups/vaccines/etc etc etc. I don't have kids in school yet, but as a former teacher, I will go out a step further and add that this advocation/involvement extends to the child's education-- while teachers might be facilitating classroom education, it is not their responsibility to get your child where he/she needs to go -- they are there to help in that process, sure, but as parents, we are also supposed to be training our children in the way they should go. I know...soapbox. But before Ridge, I took everything our ped said and just ran with it. I got the vaccines at normal times. Sometimes it might be a ton of vax at a time and I didn't know. It wasn't that I didn't care, I DIDN'T KNOW. I am PRO vaccinating...but I am MORE pro EDUCATING. I think you should KNOW what you are putting in your child's body...you should know what the symptoms of an illness your child has mean-- and it's okay to know before you go to the doctor. It's okay to think Sally has strep throat and ask if it could be that even if the dr says it isn't that. It's okay to ask for a strep test, or bloodwork, or whatever. I'm not saying be paranoid. Goodness, no. BE INVOLVED, though! God gave you that child-- if anyone should know what goes in his/her body, or why something is going wrong in his/her little body, or what's going on at school, it should be US-- the parents! These precious babies are entrusted to us and we need to take the best best care of them-- we make sure they are clothed, fed, and loved-- but what about their medical care? Why do we so often just allow someone else to make that decision for us? Because they have MD by their name? Good reason- but it doesn't make us exempt from being EDUCATED CAREGIVERS FOR OUR CHILDREN!
okay. i'm stepping off...for now.
I am busy trying to finish October See Saw Ridge Production orders .... won't be done by Nov 1...but I do have several finished.
And...November 11th is fast approaching. Blake Bolerjack/Soul'd Out Quartet benefit concert for Ridge is at Yukon Church that day. Contact the church for more details. Tickets are $10 in advance, $12 at the door- proceeds go to help cover Ridge's medical bills. A love offering will also be taken up that night. We appreciate all the parties/people involved in making this possible. God is good. Because of the concert, there was a write-up on Ridge in the Baptist Messenger here in Oklahoma. Because of that write up, a small church of about 25 people (my husband spoke to the pastor, who got our information from my dad, who is a BCM director at SWOSU, for those of you who didn't know) became aware of our story and wanted to help. They sent a donation that well surpassed their numbers...I can't believe a church that size was able to be so generous-- Thanks be to God!
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