tiiiired

i'm up late working on something really cute. but i'm too tired to think about the next step in it, so i'm going to go to bed. write a sure to be nonsensical blog post.

how the heck is everyone? i'm not sure who even reads this anymore, and it's more like therapy for me anyway, so it doesn't reeeeeaaalllly matter, but whoever you are, wherever you are, i hope this finds you incredibly well.  if it doesn't, i can assure you, you aren't alone! :)  while i seem to be physically well right now at the moment, there is a lot of tiredness in my life....and sawyer had a tummy ache part of today that seems to have gone away, i sure hope so anyway...ridge is bleeding again, but not badly enough to get blood yet, so we are still home.  but that is nervewracking.  brandon is doing well as far as physical health/not being sick goes, as am i(but i know, i already said that.)

i am sleepy tired, and i am tired tired.  sometimes i don't want to go to sleep bc there is much to be done in the way of housework, laundry, necks to hug, and craftiness around the house.  and i'm a glutton for being home, so i like to stay awake and be IN our home as much as possible.  but i am also mentally and emotionally tired from this ride.  i'm tired, in general, of having to do this.  i know that isn't probably the best attitude to have, but it's still the truth.  it's been too long.  it's been enough....in my opinion. i know i don't call the shots.  and that's fine. we'll keep pressing on, bc really, what the heck ELSE are we going to do until this ends?!?!?  but i'm tired of it.  i'm tired of having to avoid busy places-- places containing people who want to touch the cute baby, bc who the heck DOESN'T want to touch a cute baby or give him high five or whatever?  especially when it's people you are acquainted with!  and it is difficult because you never know if people want to or even have time to hear a big speech at the grocery store or on a walk or even at the hospital about how we can't be around a lot of people/in close proximity with people who might be touchy touchy with ridge.  if i wasn't afraid i'd bore them to death, i'd explain that every single time just so people knew i wasn't being weird....or i was at least being weird for a good reason.  because it is difficult, and i am weary from people not understanding.  don't get me wrong-- i don't feel like anyone is second guessing our decisions or scrutinizing our shut-in type behavior.  i think everyone knows in the basic sense that ridge can't be around a lot of people.  but i am tired of feeling like the bad guy.  all you mommas out there know you would do anything to protect your children....anything at all.  and i will.  but it is a weary road to have to either stay home...or stay a distance away from people when we are NOT staying at home....and it is a weary road to have to tell people to stay away, or to not touch ridge, or to use the hand sanitizer, or to make sure people are immunized if they are going to be close to him.  i HATE it.  HAAAAAAATE it.  bc i'm not the boss of anyone but my children...and i'm really just a steward there anyway.  but as much as i HAAAAAATE and Bdawg hates being the rule maker there....i guess we will press on.  the act itself of having to be precautious like that gets on my nerves.  makes me angry. makes me sad.  and it makes it all the more difficult when you don't feel like you have the platform to explain it.  because everyone's time is precious.  so to all of you who read this and i know many of you who do read this are people who call us regularly....or send us notes of encouragement....or visit at the hospital or even when we are at home....or see us on a walk in the neighborhood....or see us at the grocery store (which we can now go to bc i can totally cover the cart up with my handy dandy shopping cart cover)...or send us text messages...or send sawyer super cool mail....thank you for sticking by us.  thank you for understanding that this is a season. just a season. and one day, this season will be over, and ridge will be able to take all those hugs and kisses i know you are storing up for him.  and we will be able to open our door to you, without reservation and without fear. and i won't have to chase you with germ-x.  and i won't have to ask you to get a flu shot.  and i won't have to wear a mask when I'M feeling under the weather.  and sawyer will be able to go to school. and we will all four be able to go to church.  and we will get to visit family out of town. and we will get to go on vacation. and we will get to go to the movies- all four of us and ridge will be able to sit in the nasty seats and lick all over them if he wants to (although it will still gross me out).  thank you thank you to our friends and our family.  i can not imagine how it feels to have to wonder if it is okay to stop by or okay to breathe when you are in our house or hospital room or whatever you might wonder...i can't imagine. but thank you for trying to understand where we are coming from. and thank you for still being there...bc as much as we need our friends now, i promise we will still need you just as badly when this road is all over and done and we can be in the same room with all of you at the same time.  so thank you for not giving up on us and being faithful to pray for us, encourage us, love on us, whatever it is you do for us- thank you.

my eyes are crossing with tiredness.  i will actually go to bed now.  i hope the day finds you well...or the night...whenever you are reading this.  a few things i can't get out of my head from today:
one friend told me, while sharing some hardships of her own, "but we count our blessings, not our hardships, right?" and oh girl, did i need to hear that.  i think my hardships this year have outweighed my blessings sometimes, but i know that isn't true.  it is the least true thing i could say.  because this year, our friends and family and community and church have stood behind us in a way we never would have experienced had we not been given Ridge.  we are blessed.  it is hard for me to see it some days. but we are incredibly, richly blessed.

and another friend reminded me today...a girl i went to HS with, and haven't seen in probably 10 years.... "by his stripes, we are healed."
AMEN AMEN AMEN.

good night.
xoxo

waiting around....

i'm not waiting around bc i'm bored.  well, i kind of am bored, but not for lack of having things to do. i have a ton of things, crafty things, to be doing. but it's 10 pm.  so i quit for the night....and sawyer was in bed at 8:30....ridge usually crashes for a few hours around 9...so bdawg and i were gonna catch a movie on demand.  so things worked out great because ridge was wide awake and laughing....the cable wasn't working....and i've been trying to drink one cup of coffee all day and haven't gotten it done.  so here i sit, blogging and trying to drink that coffee while ridge is in the back of the house with the hubs....throwing a huge fit (the baby, not the daddy).  man.  if you didn't know our history, i bet that sounds kind of...normal.
sawyer got 3 letters in the mail today (well, cards/stickers/whatnots).  what a day!
i went to target and hancocks and homeland....did quite a bit of sewing....my parents came by for a bit...and last night uncle G and aunt B (maybe i should call you something else, since the OTHER aunt is already deemed aunt B....hmmm...aunt DB it shall be...until i find a more suitable term for you) and Sir Baby Noah came over. I like calling that baby Sir Noah...so Sir Noah he shall be.  anyway, i COOKED dinner for the....well 6 of us who eat table food...Sir noah just chilled in his carrier until he woke up and his momma held him. Anyway, we had spaghetti.  and ridge LOVED it!  ridge is getting so big. he likes to eat table food and he is oh so very close to walking!  he still loves the idea of a bath so i have to gain some patience or just decide to get his central line out and another port placed bc he isn't going to be patient about not getting a regular bath much longer.  ANYWAY...so sir noah and all of his cuteness was here...hanging out at my house.  it was a grand time filled with baby eyes staring at the light/ceiling fan, borrowed washing machine time to clean sir n's baby clothes....chitty chatting with aunt db, lego mania with uncle g (okay, not lego mania....but giant legos, sawyer, and uncle G, so it was a fun time)....anyway...just some good hanging out time.  no cards were played or anything bc now with 3 kids around it seems like someone always needs to be fed or changed or held...or maybe we are all just too tired to want to do anything but sit! ha.  anyway, so glad they are back.

i'm rambling. i'm tired. too late for a movie i guess.  no, the coffee doesn't keep me awake. it doesn't really even phase me.
ridge is doing really well still.  we have about 4 more days on the steroids, and then i think it will be interesting to see how well he does.  normally after we come off the steroids, it is only a matter of days (if even that) before the bleeding resumes.  he is getting older every single day so i am
certainly hoping that this time at home will be a long time....filled with some normalcy.  i even made him a grocery cart cover so that he can get out with me now!  (not yet, not while on the high dose of steroids...but...soon!)...SEE:

i used a pattern and everything-- so straight laced am i.  normally i free lance everything/make my own pattern....but i bought the pattern and about had to throw it in the trash before i was finished, but we made amends and i forgave it and used it anyway.  i was quite proud of this project because i usually make for others-- gifts or orders or whatever, but i don't usually make for us/our kids....so ridge got something GOOD out of yesterday's work.  plus it's in OSU colors, so i know you will all agree, it is absolutely adorable.  right? all of you. ALL of you. (um...if you don't know me, you know i'm not serious...because i could care less about pretty much ANYTHING having to do with sports.  but bdawg is a pokes fan, so i ran with it on the cart cover.)

my eyes are crossing i'm so tired.  so i will sign off from this random post. i hope the week has found you well.  thank you for your thoughts and prayers! our hope is that normalcy will be here sooner than later....every saturday night at home i become somewhat sad...i am glad to be here, but i know sunday is rolling around, and i just dont' feel like we can take ridge to church when he is on the steroids and has his immune system so compromised....but we so miss our church. i know some of you Yukon Church friends read this-- WE MISS YOU!!! thank you for the kind cards and awesome gift basket full of snacks when we were in the hospital.  for the phone calls/voicemails/text messages/prayers....oh we love you, church family!

well....i don't really have anything else to tell anyone tonight!  if we can stay home awhile, maybe i shall get better/back in the swing of things with the blog!

take care!

alisha

normal? [alternately titled: thank you, locusts.]

so...ridge feels AWESOME.  we got his port taken out, and it has made a world of difference.  Of course, he is on steroids right now bc of some bleeding that couldn't be controlled due to some other med issues....and he would've had to get some steroids anyway before surgery....so we are trying to embrace the roids, bc he feels good when he is on them.  we have about 6 more days before he's off them again.  the day we got home....well, the next day...sawyer woke up from nap with a fever, headache, and sore throat. i am so tired of illness.  he is on antibiotics and holed up watching a slew of movies and doing crafts in his room.  he is having a good time with it but i just want us to all be together!
speaking of sawyer, he is really having a rough time, i think with all of this.  he did okay at first, and he still does sometimes.  but it has been a year that his life hasn't been normal.  i don't want to go into a lot of details but i just know this road is getting hard on his little spirit.  please pray that things will begin to improve with ridge- we need that to happen so that our family can try to be a little more normal.  i have tried recently to spend some one on one time with sawyer, outside of the house and outside of the hospital. brandon tries to do that too.  but it doesn't change the fact that we are ALWAYS worrying about ridge's MLT/ridge getting sick/ridge's lines/ridge's development.  sawyer would've had to share the limelight either way with a new sibling, but i just feel like he is probably feeling a greater overshadowing bc of this disease/hospitalizations/etc.  so please pray for him and for us and for ridge.  things HAVE to get better, bc our little family just really can't take much more i don't think.  I know God will carry us/won't give us more than we can handle/blah blah blah-- i KNOW that.  but i really believe it is time for Him to say, "ENOUGH."
also speaking of sawyer, he loves to get mail.  he asked me more than once today if he got any mail.  so those of you who have our contact info, and are feeling like you want to do something to give your heart some wings or whatever, feel free to send him something. i don't mean gifts or money or whatever, i just mean some mail.  he gets a highlights magazine once a month from his gibby and loves that.  he'd probably love post cards or stickers or a picture your 2 year old colored or whatever.  i'm not fishing for gifts here, i promise, i just think that is a way to boost his spirits a bit right now. we are working hard at telling him how much he is loved, but i think that might make him feel really special to get a piece of mail for a few days in a row.
my email is seesawridgeproductions@yahoo.com if you would like to email me for our contact info.
now, onto the rest of this post.  normal.  what is normal? i don't even know. we were in the hospital basically a month this last time. all of our milk and yogurt went bad, so did most of our produce.  so the other night we went to the grocery store. ridge had never been. bdawg held him the entire time and ridge was pretty much in awe.  before that we dropped some things off with aunt b and uncle g who have moved back to the area and we are so glad and anyyyyywayyyy, we were driving to the grocery store and i just couldn't keep it together.  i LITERALLY can not remember what it feels like to be normal.  to be cooking in my kitchen with no big cares in the world, to be driving my family to the grocery store to buy a few things just like it's normal.  i don't remember that- i DON't REMEMBER HOW THAT FEELS.  it is overwhelming.  i am typing this post with a billion invisible pounds of burden weighing me down, and yes, i can give it all to God like some of you will say, but it doesn't take the situation away!  it is impossible to feel even a semblance of normal.  or close to impossible.  that night, after my meltdown and my grocery shopping for which i had no coupons with me so it cost me a crapload of moolah for like 4 bags of groceries, i was sitting in the living room, late, and it was quiet bc sawyer was in his room going to bed and brandon and ridge were on a walk, (wait, this was all the next night), i heard the crickets outside.  or a locust. or something. something that reminded me of summer night sounds.  something i hadn't heard in...a year.  it's hard to hear that stuff when you are living on the 8th floor of a hospital.  and for a second, i remembered what i felt like to be normal.  really-- in the brrrrrp brrrpppping of those insects and the silence all around me, i could remember hearing that sound before, in another time and place in our lives, a  time when not all things were right bc they never will be but a time when things were the same for us as for the majority of people in the world.  a time when i didn't feel like i had to remember a million things, have a list of meds a mile long for my one year old, a time when i might not have wanted to leave my children to go to work or to go out, but i COULD, a time when i didn't feel like crying about every stupid thing and didn't feel like things were so out of control they would never ever ever come back to normal.  a time when i cooked more than i ate out and when i might not have exercised enough but i had time to if i wanted to. a time when i didn't try to work nonstop when i was at home and stay up super late either working or catching up on movies i want to see because i could do that stuff another night, another weekend, whatever.  a time when i didn't have to worry that my house wasn't going to be cleaned or i wasn't going to get to have people over for dinner, bc if it didn't work that day, it would work another day soon bc i was always home.  now, each moment is all i've got.  it's all we've all got i guess, but it is more apparent to me now.  and while that moment was fleeting, i am thankful for the locusts.  i'm glad they didn't come in a plague this time or anything, but i am thankful for them in that one moment, that split second, because they took me to a little bit of normal.
school started this week. students start tomorrow.  this is incredibly difficult for me on so many levels, but mainly bc i love working with juniors and seniors in high school and building those relationships. i also love math and miss teaching it terribly and while part of me is glad to be at home with my kids, glad to be able to work on some crafty things i couldn't do before, glad to be realizing if i couldn't teach ever again, i'd become a nurse or something in the medical profession, the tug at my heart that tells me i belong right where i used to be will not go away.  so to all my YPS friends who still read this blog, i hope you have a great year this year.  i am jealous of you.  i want to be there more than i ever knew i did.  and it isn't easier the second year around.  my heart could just burst i am so sad that i am not there.  i'm not kidding.  sure, things won't be perfect this year for any of us. sure if i ever get to come back, things won't be perfect then.  but i know that is where i belong.  and i can't wait to be back there with you all.  so while you are either excited for a new year or dreading that your summer is over or both...know that i want nothing more than for my ridge to be well enough that i can be back to work with all of you and with the students that drive us crazy but also, i've realized, keep me sort of sane.  i miss you guys.
and with that, i'm signing off.

prayers...

lately i find myself praying with most of my breaths.  praying things like, "Lord, let this end for us. Let it be over.  Let this be the last bleed Ridge has before outgrowing this."  I know we can do this the rest of his life if we have to, but seriously, I do not want to.  I am so ready for a normal-er life.  Even if I never ever can go back to work- which is hard to adjust to, so we're not even talking about that yet, the plan is still to go back in the next year or so if I am able to and if the school can rehire me at that time-- but even if i can NEVER go back to work, I would just like to have this stupid disease behind me.  it is beyond exhausting and frustrating.  I am really trying not to complain.  I am just weary of the journey.

July brings new residents, new fellows, and quite a few new nurses, so this is a difficult time to be in the hospital. Things don't get ordered/get ordered incorrectly/things just get messed up.  It is frustrating.  I want to go home. I want all four of us to all be home together . The past 12 mos just haven't been anything I'd ever imagined.

Ridge is on a higher dose of Amicar, we are hoping to get dosing figured out so that we can hopefully stay on that and be off of the Octreotide forever.  We covet your prayers for complete healing, stopped bleeding, wisdom, financial peace (um...can I just say the process of trying to get ANY financial help is RIDICULOUS?  I know we are in the middle so we have to fight to try to get any federal aide...but seriously we have been working on it 7 months and "it's in the mail" is getting old.  It isn't in the mail.  And I know based on Ridge's disease and income he will qualify for something.  How great would it be if we could actually get it while he NEEDS it?  bc if we get it later, it doesn't do any good...it isn't THAT retroactive....) so pray about that stupid process too.  So many things are just so overwhelming and frustrating right now.

I began working w/ sawyer this week on homeschool pre-k/K curriculum.  He has mastered the phonetics of the letter I, though he can't write it well yet....and he has memorized John 1:3 and Genesis 1:1.  He is a very good student :)


The only thing getting me through this rollercoaster sometimes, seriously, is imagining what I am going to do when it is over.  Before working again, before anything like that again, there will be many vacations had.  I'm not kidding. IDK how they will be paid for, I don't really care-- they WILL be taken!  I'm ready to get away with a couple of girlfriends who have walked this road with their own children, and Brandon wants to go on an Alaskan cruise, and I have consented to that...and when Ridge is better enough, we will also find somewhere to shack up as a family of four....all summer.  That's my plan-- a summer at the lake, not too far away, but far ENOUGH away.  Really, sometimes I just daydream about that stuff bc it is really what gets me through some moments...and i know we will get those dreams....someday.

I thought of some other things to inform you all of, but they have slipped my mind.

Those of you who are fans of the business/my projects, if you are on FB,  become a fan of our page-- SeeSaw Ridge Productions-- soon, as in, the next time we get out of the hospital, everything I have pre-made/in stock will be reduced 20% or more in price.  Good time to buy.  Off the top of my head I know I have a few bows/headbands/hats, several burp rags, a few pairs of baby shoes, possibly an apron or two, a baby swaddler, and lots of jewelry.  So if you are wanting or needing a gift, now's the time.

So much more to tell I am sure but I can not think of anything.  SO there is our update for now.