This is an anniversary I would rather not celebrate. One year ago yesterday Todd was diagnosed with kidney failure and acute heart disease. Today, the heart disease is gone, and the kidneys are failing as expected. What a year. There are times that it feels like this has been our lives for so much longer than a year. Although it never feels shorter!!
Throughout our entire marriage we have had trials, who hasn't right?, between being lied about in court, being lied to by ex's, being deceived, trying to blend a family and make the transition smooth, only to be lied to by the kidlets, (yea I know kids lie, its what they do when they are afraid, I really get it, I do.) And the constant pull of the adversary trying to bring you down every time you get ahead just a little bit, and get on the right course, dealing with immigration, more court battles, more threats from ex's, more battling for parental rights, financial ups and downs, THIS is the only year I wish I could change. It has made me feel soo incredibly weak. Maybe because there is yet to be an end in sight. Maybe because every other struggle we have just feels more like a 1000 lb stone being put right on top of MY shoulders. I try so hard to take care of everything so my sweet husband can focus on the most important thing on our list of to do's,, GET HEALTHY!
I went and got a job 3 years ago out of boredom. Levi was in school, Kenz was getting ready to move out, Jake was good. I needed one that allowed me to work weird hours, where I could be home when my kids got home from school. *no matter what anyone says, I firmly believe, and my kids have shown me, that they needed me more as teenagers than as toddlers and preschoolers,* So it was important to me that they do NOT come home to an empty house. Mum had to be there to greet them, to ask how their day went and to just listen sometimes.
My very first interview I fell in love with the supervisor,, not romantic love, but a OMG I know you and I are going to be the best of friends love. We just clicked and I got the job!! I loved my job,, I love it still,, most days!, and my old supervisor and I,, yep we are friends... she understands me, and my frustrations, she listens when I need someone to talk to, she doesn't pity me, she gets me. She tells me to have a pity party every day for about 5 minutes then move on with my day. She gets it when I say I dont want to go home because I know what's waiting for me, and all I want to do is sleep. I love her. She is one of my rocks that I lean on quite heavily, and when I don't hear from her after a couple weeks, I start to get worried, *her husband is also disabled*
Anyways I digress, I never thought my little $11/hr job would be the sole providing income for our family. Todd was always so good at providing for us. Then 2013 hit, and boy what a roller coaster. We went from $XXX,XXX.00 a year to $18,000.00 WHAT? really? Talk about a shock for the pocket book. I mean I can totally do poor, I have done it most of my adult life, with the exception of when Todd was working, so that wasn't the problem. The problem was now my husbands whole entire sense of worth and purpose was gone. He could no longer see well enough to work, *I don't want to get into all the things he can no longer do, y'all can read those in previous posts* He could no longer handle the stresses of every day life, of dealing with the ex's, and all the sweet stuff they like to throw at ya, of dealing with the bills, the rent, the noise kids make. Yes you read that,, he could no longer deal with the noise kids make being kids. So I went into overdrive and became the middle man between him and the kids when he got angry, I started worrying about the bills, I stepped up and did everything while Todd focused on getting better. I took over everything. He can't see to pay the bills, or even read them, I took over disciplining the kids because it was better that I do it, than he fly off the handle over someone not picking up a towel, or leaving a noodle mess in the sink, watching him cook is somewhat hilarious, but he does still do that.
This is my life, *sigh* (please don't comment that you're sorry we are going through this,,,etc.etc. I love reading your comments but I don't need pity, what I need is a BREAK! LOL,I don't remember what it is like to go 24 hours without someone needing something from me, a sign *work* a schedule *work* their blood kit, their medicine, dinner, socks, stop this argument! I post this only to vent, I know this is happening for a reason, I'm not sure the reason, but I do know this is all part of my Heavenly Father's plan for our family)
3 am get up, exercise and get ready for work.
530 leave for work
630-230 work, *tiring in and of itself*
3 pm home
check on hubby, make sure he's breathing,, no jokes, he's usually back in bed after getting levi out the door for school
4 pm levi gets home and get him going on homework, do whatever laundry I need for the next day
5 pm dinner,,, depending on how he's feeling one of us cooks, although now that it's just mister picky spoiled pants at home, dinners consist of a salad for Todd and I and whatever for Mr PSP.
6 pm kitchen, or not,,, most nights it's not.
7pm get Mr PSP in the shower and get myself ready for bed.
730-8pm I go to bed, exhausted, emotionally, physically and spiritually
lather rinse repeat, lather rinse repeat, this is what runs through my mind lol
So yes this is an anniversary I would rather NOT celebrate. One I wish we didn't have. However, it has taught me patience, tolerance and to accept help from others.
We are so very grateful for all the support we have received from family and friends through the various fundraisers that have been held for us. We now have insurance to cover Todd and his medical needs,,, $400 a month with a $986 deductible, once that is used up,, everything is free!!! So he can now go get his eye surgery that he is in desperate need of to stop the bleeding behind his eyes. Hops is on the horizon, hopefully he can get his eye sight back! What a wonderful day that will be.
I'm off to finish the Harry Potter Marathon with my favorite 10 yr old,, Mr. PSP!!
Thanks for listening
Sunday, January 19, 2014
Wednesday, December 11, 2013
All I want for Christmas is a new kidney???!!!
I've been sitting here for the last 30 minutes trying to figure out a cute and clever way to start this blog post.... and I got nothin'! So many thoughts are running through my head right now, that I want to share with you all and it's all coming out a jumbled mess.. My emotions are literally all over the place, between lack of sleep, the holidays, getting ready to send out our oldest boy for 2 years, dr's appts, school award ceremonies that I always seem to miss, I feel like all I've done lately is cry...
Where do I start.........A year in review,,, nah, it's all already on here... how about the last couple weeks in review...
Our oldest daughter, Todd's sisters, and Mom all held an auction on Facebook to raise money to help us with our medical bills and living expenses until disability kicks in. This has been, indeed, a very humbling experience. My husband is a proud man, who loved being able to give his family whatever they needed or asked for for that matter, and these last couple years have been a huge struggle for him to go from bread winner to,,, watching his wife go out a bust her butt for pennies compared to what he was making. It has been amazing to watch people we don't know, who don't know us, donate items for this auction, bid on items donated and OH, the humanity of it all. (is that the right term?? probably not,, I'm tired!) It has brought me to tears on many occasions, and truly humbled us.
Our oldest son is leaving for an LDS mission for 2 years, on December 18th for Georgia Macon. This is a huge opportunity for him. This was his decision, We have told him for years that although this is something we hope he will do, it had to be his decision and we were ok if he didn't want to go. When he decided to go, which honestly has just been in the last 8 months,, we were thrilled. Then reality hit me,, my baby boy would be gone,,, serving his Heavenly Father for 2 years, 24 months, 104 weeks, 730 days!!!!!! AUCK! seriously? I'm not sure I can go that long with no hugs, no him sneaking into my room and jumping on the love sac to join me in watching a movie, randomly hugging me,,, because he can see I need it,... no "love you mom" at the end of every night...(great now I'm crying AGAIN!!!!!! grrr) I'm being selfish. I don't want to share my kids with anyone. I want them to stay safe in my mommy bubble forever. (Meanwhile Todd is thinking, "go my son, conquer Georgia, grow, learn, come back a man, blah blah, blah) They can get married and have my grand babies, but they have to stay in my mommy bubble. I'm scared to send him out there. On the other hand, this is a huge leap of Faith for me. I trust that my Heavenly Father will watch over and protect Jacob. I know he is going to rock Macon Georgia! And make so many new friends!!! He will grow so much. This is where he needs to be at this point inmy his life. (I still think they really need to cover the whole "you have to let them grow up and leave the nest" part in sex ed and family living classes,, just sayin'!)
Work has been crazy because, well,, it's fourth quarter! enough said?? I go into work anytime between 2 am -6 am and work 8-10 hour shifts. Yea I know, it's the norm for some of you,,, in fact some of you work longer shifts, and I really am blessed to have a job that I absolutely love!
I'm just exhausted, and stressed. This is a new position for me, remember I was a stay at home mom for 15 years, (YIKES has it been that long??), I feel like every time I take a step forward I get pushed back two. I am having to learn tact, it's a trait I seemed to have missed out on, to tone down my sarcasm, way harder than it sounds, and to be a leader. Kinda overwhelming for a person who's biggest battle for 15 years was getting the kids to do the dishes,, can't spank employees,, they kinda frown on that,, GO FIGURE! And then come home and leave work stresses in the car or better yet at work, and put on my parent/wife hat when I walk through the door, when all I want to do is crawl into bed.
Christmas... it's leaner this year than in years past. We have talked to our kids about it, and bless their hearts, they get it, they understand. At least they say they do. Doesn't stop a mom from feeling guilty about not wanting to give her babies the best Christmas ever though,, so this year we have made hygiene bags and collected blankets and a few toys and are taking them to a local family shelter this Saturday for Christmas. When we talked to the kids and asked them if we could do this instead of struggling to spend money we don't really have, on ridiculous items we don't really need, they all said "YES!" My heart overflowed! They will still have one present under the tree from us, and from each other,, stockings will be slimmed down quite a bit (I can easily spend $100 on EACH stocking, a very sore spot with my husband as he doesn't seem to grasp how much I LOVE STOCKINGS!), and there will be nothing under the tree that isn't needed or useful. And we are all ok with that.. We have received so many blessings this past year that Todd and I felt it was important to give back and to teach the kids, (the youngest ones mainly, the older ones get it) that doing service for others is the greatest gift out there.
Now onto the title of my post... are any of you still out there reading this? Sigh
Todd had a dr's appt about a month ago and was told his kidneys were on their final lap. I don't remember numbers and where his levels were, I wasn't able to go up with him to his appt's that day.
The dr's told him no more 90 days between visits, they wanted to see him every 4 - 6 weeks. Ok no problem. We went up yesterday, well he went up the night before because he had to get a bunch of lab work done, and I went up yesterday right after work (just so you understand why this post is such a jumbled mess, I was up from 9 pm Monday until 8 pm tuesday, and got up at 11 pm tuesday to go to work wednesday morning, thus the lack of brain function!)
I made it in time to go to two of the three appt's with him. Dr Leon, who is our kidney specialist walks in and says basically, ok this is it,, the next time I see you, we will need to figure out what kind of dialysis you want,, Todd's creatin levels are at a 3.36 with a gfr of 21. GFR is some medical term that gives them the percentage at which your kidney's are functioning, (thank goodness for the notebook app so I could take notes during this visit), When your kidneys are function at 20% you are eligible to be on the transplant list, NOT 1% before you hit 20. At 15% with symptoms of loss of appetite, tiredness, constant itchiness and others I'm sure the PA mentioned, you go on dialysis. He is still loosing alot of protein in his urine, and his potassium levels are high.
We knew this was coming.. and honestly, through the Grace of our Lord, we have made it further than we thought we would. We were expecting to be on dialysis NOW, as were our dr's. So, Dr. Leon told us there are two kinds of dialysis, one you do at home, every day, at night for 7 hours while you are sleeping, and one you do 3 times a week at a dialysis center. He thinks we are perfect candidates for the at home dialysis, and I sure hope he is right. Not that I've ever had to do either one, but the at home one sounds easier to me. With the exception of the threat of pulling out your port in your sleep and bleeding out.. (thanks bestie with all the medical knowledge for that little tidbit!)
We go back on the 21 of January for more lab work and to get on the transplant list, make an appt to meet with the transplant team and get that ball rolling. Dr Leon said obviously he would prefer a live donor, and if we can find one then we may be able to skip dialysis all together. When I asked him what the criteria was for a match, he said we would get all that info when we meet with the transplant board. Both dr's are very happy with where Todd is at. He is doing everything he himself can do to ensure he is not damaging anything any further.
I, on the other hand, just want my healthy, easy going, laid back, non tired husband back. I try not to dwell on it, to think about it or over think it. I try to hide my stress from our boys and Todd, the last thing he needs is to stress about me stressing about him.
I sit here and think, how on earth can I do this on my own?? Jake has been my 2nd hand man, his dad's chauffeur, my errand runner, his dad's company during the day, and evenings. I listen to my scriptures on my way to work every morning and that really helps me get through the day without needing bail money,, no seriously. I am scared to ask for this burden to be lifted from our family..Heaven only knows what's around the corner for pete's sake! I know there is something we need to learn or teach someone from all this. I wish I knew what it was. I know the Lord doesn't give us more than we can handle,, I firmly believe that. Some times I just wish I felt as strong as the Lord seems to think we are.
This is Jake's mission area, where he will be for the next 720 days... :)
and for those of you who missed it, or want to listen to it,, here is the link for his farewell talk he gave this last sunday in church:
it's not video, just an audio of his talk.
We hope you all have a happy and joyous Christmas season, and may the true meaning of Christmas linger in your hearts and homes the coming year!
Love The Johnson Clan!
Where do I start.........A year in review,,, nah, it's all already on here... how about the last couple weeks in review...
Our oldest daughter, Todd's sisters, and Mom all held an auction on Facebook to raise money to help us with our medical bills and living expenses until disability kicks in. This has been, indeed, a very humbling experience. My husband is a proud man, who loved being able to give his family whatever they needed or asked for for that matter, and these last couple years have been a huge struggle for him to go from bread winner to,,, watching his wife go out a bust her butt for pennies compared to what he was making. It has been amazing to watch people we don't know, who don't know us, donate items for this auction, bid on items donated and OH, the humanity of it all. (is that the right term?? probably not,, I'm tired!) It has brought me to tears on many occasions, and truly humbled us.
Our oldest son is leaving for an LDS mission for 2 years, on December 18th for Georgia Macon. This is a huge opportunity for him. This was his decision, We have told him for years that although this is something we hope he will do, it had to be his decision and we were ok if he didn't want to go. When he decided to go, which honestly has just been in the last 8 months,, we were thrilled. Then reality hit me,, my baby boy would be gone,,, serving his Heavenly Father for 2 years, 24 months, 104 weeks, 730 days!!!!!! AUCK! seriously? I'm not sure I can go that long with no hugs, no him sneaking into my room and jumping on the love sac to join me in watching a movie, randomly hugging me,,, because he can see I need it,... no "love you mom" at the end of every night...(great now I'm crying AGAIN!!!!!! grrr) I'm being selfish. I don't want to share my kids with anyone. I want them to stay safe in my mommy bubble forever. (Meanwhile Todd is thinking, "go my son, conquer Georgia, grow, learn, come back a man, blah blah, blah) They can get married and have my grand babies, but they have to stay in my mommy bubble. I'm scared to send him out there. On the other hand, this is a huge leap of Faith for me. I trust that my Heavenly Father will watch over and protect Jacob. I know he is going to rock Macon Georgia! And make so many new friends!!! He will grow so much. This is where he needs to be at this point in
Work has been crazy because, well,, it's fourth quarter! enough said?? I go into work anytime between 2 am -6 am and work 8-10 hour shifts. Yea I know, it's the norm for some of you,,, in fact some of you work longer shifts, and I really am blessed to have a job that I absolutely love!
I'm just exhausted, and stressed. This is a new position for me, remember I was a stay at home mom for 15 years, (YIKES has it been that long??), I feel like every time I take a step forward I get pushed back two. I am having to learn tact, it's a trait I seemed to have missed out on, to tone down my sarcasm, way harder than it sounds, and to be a leader. Kinda overwhelming for a person who's biggest battle for 15 years was getting the kids to do the dishes,, can't spank employees,, they kinda frown on that,, GO FIGURE! And then come home and leave work stresses in the car or better yet at work, and put on my parent/wife hat when I walk through the door, when all I want to do is crawl into bed.
Christmas... it's leaner this year than in years past. We have talked to our kids about it, and bless their hearts, they get it, they understand. At least they say they do. Doesn't stop a mom from feeling guilty about not wanting to give her babies the best Christmas ever though,, so this year we have made hygiene bags and collected blankets and a few toys and are taking them to a local family shelter this Saturday for Christmas. When we talked to the kids and asked them if we could do this instead of struggling to spend money we don't really have, on ridiculous items we don't really need, they all said "YES!" My heart overflowed! They will still have one present under the tree from us, and from each other,, stockings will be slimmed down quite a bit (I can easily spend $100 on EACH stocking, a very sore spot with my husband as he doesn't seem to grasp how much I LOVE STOCKINGS!), and there will be nothing under the tree that isn't needed or useful. And we are all ok with that.. We have received so many blessings this past year that Todd and I felt it was important to give back and to teach the kids, (the youngest ones mainly, the older ones get it) that doing service for others is the greatest gift out there.
Now onto the title of my post... are any of you still out there reading this? Sigh
Todd had a dr's appt about a month ago and was told his kidneys were on their final lap. I don't remember numbers and where his levels were, I wasn't able to go up with him to his appt's that day.
The dr's told him no more 90 days between visits, they wanted to see him every 4 - 6 weeks. Ok no problem. We went up yesterday, well he went up the night before because he had to get a bunch of lab work done, and I went up yesterday right after work (just so you understand why this post is such a jumbled mess, I was up from 9 pm Monday until 8 pm tuesday, and got up at 11 pm tuesday to go to work wednesday morning, thus the lack of brain function!)
I made it in time to go to two of the three appt's with him. Dr Leon, who is our kidney specialist walks in and says basically, ok this is it,, the next time I see you, we will need to figure out what kind of dialysis you want,, Todd's creatin levels are at a 3.36 with a gfr of 21. GFR is some medical term that gives them the percentage at which your kidney's are functioning, (thank goodness for the notebook app so I could take notes during this visit), When your kidneys are function at 20% you are eligible to be on the transplant list, NOT 1% before you hit 20. At 15% with symptoms of loss of appetite, tiredness, constant itchiness and others I'm sure the PA mentioned, you go on dialysis. He is still loosing alot of protein in his urine, and his potassium levels are high.
We knew this was coming.. and honestly, through the Grace of our Lord, we have made it further than we thought we would. We were expecting to be on dialysis NOW, as were our dr's. So, Dr. Leon told us there are two kinds of dialysis, one you do at home, every day, at night for 7 hours while you are sleeping, and one you do 3 times a week at a dialysis center. He thinks we are perfect candidates for the at home dialysis, and I sure hope he is right. Not that I've ever had to do either one, but the at home one sounds easier to me. With the exception of the threat of pulling out your port in your sleep and bleeding out.. (thanks bestie with all the medical knowledge for that little tidbit!)
We go back on the 21 of January for more lab work and to get on the transplant list, make an appt to meet with the transplant team and get that ball rolling. Dr Leon said obviously he would prefer a live donor, and if we can find one then we may be able to skip dialysis all together. When I asked him what the criteria was for a match, he said we would get all that info when we meet with the transplant board. Both dr's are very happy with where Todd is at. He is doing everything he himself can do to ensure he is not damaging anything any further.
I, on the other hand, just want my healthy, easy going, laid back, non tired husband back. I try not to dwell on it, to think about it or over think it. I try to hide my stress from our boys and Todd, the last thing he needs is to stress about me stressing about him.
I sit here and think, how on earth can I do this on my own?? Jake has been my 2nd hand man, his dad's chauffeur, my errand runner, his dad's company during the day, and evenings. I listen to my scriptures on my way to work every morning and that really helps me get through the day without needing bail money,, no seriously. I am scared to ask for this burden to be lifted from our family..Heaven only knows what's around the corner for pete's sake! I know there is something we need to learn or teach someone from all this. I wish I knew what it was. I know the Lord doesn't give us more than we can handle,, I firmly believe that. Some times I just wish I felt as strong as the Lord seems to think we are.
and for those of you who missed it, or want to listen to it,, here is the link for his farewell talk he gave this last sunday in church:
We hope you all have a happy and joyous Christmas season, and may the true meaning of Christmas linger in your hearts and homes the coming year!
Love The Johnson Clan!
Sunday, November 24, 2013
Please no!/Please KNOW!
Trials are funny things. We don't often know, at least I don't, if its Satan trying to steer us off the path of righteousness or if it is Heavenly Father saying to us "hang in there, you can do this."
These last couple weeks have been a struggle. And I have been putting off posting because I hate whiners! I'm more of a, if life hands you lemons, you cut those suckers and squirt the advisery in the eye, kinda gal!
Todd had dr's appointments a couple weeks ago, that I was not able to go with him for due to work. So Jacob, being the awesome young man he is, drove his dad to St George and chauffeured him from one dr to the next all day. After blood tests and looking at his glucose levels for the last couple months, the doctors all came back with the same diagnosis. His kidneys have lost their second wind. His creatin levels are at a 2.8. These are levels we want below a 2, at 3 the docotors start talking dialysis. We have been worried about his liver function and my bestie and I have both noticed that he is starting to look a little yellow, the dr's say his liver is ok. Not great, fantastic, no worries. Not horrid, dying, non functioning, just ok. His body is running on half the blood of a normal healthy man his age. Thus putting a huge strain on his body and organs. His kidneys are not filtering the blood like they are supposed to, which is causing a whole bunch of problems, including his constantly being exhausted, I mean seriously exhausted. To the point where just the thought of getting undressed and taking a shower makes him want to nap, never mind actually doing it. (you think I'm kidding,, come on over!)
Ok, we can deal with this, we knew this was ultimately what was coming,,, the transplant I mean, and it seems to have peeked now. So there is no more waiting 3 months in between visits, we now have to go every month. Which is great because they can keep a closer eye on him.
A few weeks ago we found a killer deal on a cute little bug that I really wanted, and we were able to buy it, as my car was needing to go to another home. Well, last week, I was driving home from a meeting with Todd in the car, and I hit a dip in the road. YES I was going the speed limit, get pulled over once by the Henderson NV police and you would too!!, well I guess I hit it just right, because not 15 minutes later, Todd went outside and I heard him yell, WHAT DID YOU HIT?. OIL was gushing out of the bottom of my car. Yep, HUGE hole in the oil pan. OK, we can deal with this too,,, sigh. We paid our tithing, we are doing everything right, have a little faith, it'll all work out... right? This just means I have to take the truck to work for the next few days until we can get it fixed. Any of you ever leave your house at 3 am, even in the desert it's freaking COLD!
I hop in the truck, which I've been telling dear hubs we need to trade in, and crank the heat,,, after a 30 minute drive to work, my teeth are chattering,, seriously, fingers are frozen around the steering wheel, can't feel my toes,, its warmer outside in the rain than it is in my truck kinda cold. ARE YOU KIDDING ME? Breathe Rhonda, just breathe,,, we got this! My sweet hubs, is trying desperately to read the owners manual and find out if it's just a fuse or if its the heater core. *remember he's blind!, cant see hardly anything*
Last night I open the dishwasher to start loading the dishes, and there is a pool of water just sitting there in the bottom as happy as can be growing all sorts of bacteria, not really but go with me here, it's been like that all day. 10 yr old boy doesn't think to say "hey mom, there's still water in here" when's he unloaded it the night before... So I put it through a rinse cycle to try to get it to drain,, nope, water is still there, thank heavens there's not more water in there,, same amount, but it's just sitting there happy as a clam. Mocking me really at this point,, saying, "whatcha gonna do??"
One more thing to frustrate the hubs, two years ago, my car would've been fixed within the hour, the truck would've had heat and my dishwasher would have been taught a lesson on what happens when you talk back!
Between all this going on at home, on top of my sweetheart's health, I've got a 18 yr old young man, whose chomping at the bit to get to the MTC and start on the next phase of his life, although between you and me he's just a little too eager to leave me!, not really but I cry every time I try to figure out what I'm gonna do when he's gone.
I've got 4th quarter going on at work, and big wigs that decided that it would be a fantastically wonderful time to come drop by our store and make sure we are up to par on the BIGGEST ONE DAY SALE OF THE YEAR sale day.. and district managers pulling me in all sorts of different directions, totally new thing for me, being someone they need to talk to.
And we are trying to pay our bills with no assistance. hmmmmmm At $11/hr, 30 hrs a week, yea I can barely cover rent, and we've done great the last month or two, however, there is just no way we can pay for all these repairs on our vehicles and dishwasher and still pay our bills. (So not asking for help here!)
We were at a meeting at our church a couple nights ago and our Bishop saw us and asked how work was going. I just looked at him and walked away, I didn't want him to see me crying,,, AGAIN!... seriously I swear that man thinks I'm a mess, which I am, but who likes to show weakness?? He runs through a classroom in the building and cuts me off, as I try to avoid him, he grabs me and says in a calm rational voice, that I have a love/hate relationship with, "it's ok, You are being tried, hang in there, You're doing everything right and Satan hates that. He is working overtime on your family"
I know this, rationally I know this. All I can think is NO! Please NO! I can't deal with anymore.
You need to know that the Bishop is the only other Human being we have let into our marriage, he has helped us through so much. We can tell him anything and know we are not being judged. So I take his counsel to heart. In my eyes, where I am at right now, he is the closest I can get to my Father in Heaven short of hitting my knees and praying. So when he says something, I tend to listen.
We head home, and I troll on facebook and find this : (this is a family in Herriman Utah, that I have been following for quite a while. they recently lost their 10 yr old boy to acute heart failure, he was diagnosed with Duchenne Muscular Dystrophy,in 2005)
Here is what I read:
PLEASE, NO / PLEASE KNOW
Natalie and I left Mitchell’s room as he drifted sleep. Mitchell was slipping away. Everything was escalating and we knew time was running out. We both sat in the hall just outside his room and wept. Our tears came from a well of the deepest sorrows. I eventually looked to my weary wife … exhausted, frightened and heavy with grief. My heart broke even more because I knew this woman, who has the tenderest of hearts, loved her little boy in ways only a mother can know. The “fix it” father in me desperately wanted to make it all go away, but I could not.
There were many occasions that I prayed to God “Please, no.” I petitioned over and over that somehow … some way … my son would be spared. Yet, every medical intervention was riddled with peril. Too much was happening, too late. Every path was a dark path. Even still our prayers continued, “Please, no.”
At some point during my wrestle of the soul I received a distinct impression. After I had cried out what felt a million-and-one times “please no” I was finally answered with “please know”. What followed was a most unique spiritual experience. A peace and understanding had fallen upon my wife and me; and while we didn't have words to describe what we were feeling, we had a strong sense that we were being told “Please know, everything is as it’s meant to be. I've got this.”
Over the years I have come to understand that mortality, our life on earth, is a schooling the soul. It is an education that takes a lifetime to complete. There are books to study, things we must do, knowledge and faith we must acquire … and there are tests. Oh, there are tests.
There are tests of prosperity; what we do when the sun is shining and our pockets full or overflowing. There are tests of faith; what we do when the lights go out. Test of hardship; how we respond to our difficulties. Test of anonymity; what we do when nobody is watching. So many experiences we encounter … so many learnings, if we become students of the soul.
When I consider this hardship I pray that the child in my heart can rise above this profound sorrow. I know I can. And I will. But losing my son has broken every bone in my body, wrenched my soul and pulverized my heart. With all that I understand and have felt spiritually my heart still cries out for my son and I miss him terribly.
This hardship has taught me, however, that while I may plea to God “please no” … if the answer is no, I must change my plea to “please help me know.” That is the foundation upon which we grow.
.......
My brick wall came tumbling down, I bawled. I've been praying wrong, asking for the wrong things. What has happened to my faith? Time to go back to the basics. I am a firm believer that everything happens for a reason, I also believe that I don't always know the reason, but I trust He who does. I will pick up my bootstraps, I will put a smile on my face and faith in my heart, and pray that I will learn from this what I need to. Out of all of this I will become a stronger person, with steadfast faith in my Saviour, (I'm Canadian,, deal with the U!), I feel His arms around me every minute of every day. Sometimes I just get too overwhelmed and forget He is right there waiting for me to hand over everything to Him, so I can keep doing what I do without stress and needless worry. Perhaps this is what I need to learn from this,, that we, as a family are strong enough to say "Ok Lord,, we are letting go, we KNOW, You got this!"
These last couple weeks have been a struggle. And I have been putting off posting because I hate whiners! I'm more of a, if life hands you lemons, you cut those suckers and squirt the advisery in the eye, kinda gal!
Todd had dr's appointments a couple weeks ago, that I was not able to go with him for due to work. So Jacob, being the awesome young man he is, drove his dad to St George and chauffeured him from one dr to the next all day. After blood tests and looking at his glucose levels for the last couple months, the doctors all came back with the same diagnosis. His kidneys have lost their second wind. His creatin levels are at a 2.8. These are levels we want below a 2, at 3 the docotors start talking dialysis. We have been worried about his liver function and my bestie and I have both noticed that he is starting to look a little yellow, the dr's say his liver is ok. Not great, fantastic, no worries. Not horrid, dying, non functioning, just ok. His body is running on half the blood of a normal healthy man his age. Thus putting a huge strain on his body and organs. His kidneys are not filtering the blood like they are supposed to, which is causing a whole bunch of problems, including his constantly being exhausted, I mean seriously exhausted. To the point where just the thought of getting undressed and taking a shower makes him want to nap, never mind actually doing it. (you think I'm kidding,, come on over!)
Ok, we can deal with this, we knew this was ultimately what was coming,,, the transplant I mean, and it seems to have peeked now. So there is no more waiting 3 months in between visits, we now have to go every month. Which is great because they can keep a closer eye on him.
A few weeks ago we found a killer deal on a cute little bug that I really wanted, and we were able to buy it, as my car was needing to go to another home. Well, last week, I was driving home from a meeting with Todd in the car, and I hit a dip in the road. YES I was going the speed limit, get pulled over once by the Henderson NV police and you would too!!, well I guess I hit it just right, because not 15 minutes later, Todd went outside and I heard him yell, WHAT DID YOU HIT?. OIL was gushing out of the bottom of my car. Yep, HUGE hole in the oil pan. OK, we can deal with this too,,, sigh. We paid our tithing, we are doing everything right, have a little faith, it'll all work out... right? This just means I have to take the truck to work for the next few days until we can get it fixed. Any of you ever leave your house at 3 am, even in the desert it's freaking COLD!
I hop in the truck, which I've been telling dear hubs we need to trade in, and crank the heat,,, after a 30 minute drive to work, my teeth are chattering,, seriously, fingers are frozen around the steering wheel, can't feel my toes,, its warmer outside in the rain than it is in my truck kinda cold. ARE YOU KIDDING ME? Breathe Rhonda, just breathe,,, we got this! My sweet hubs, is trying desperately to read the owners manual and find out if it's just a fuse or if its the heater core. *remember he's blind!, cant see hardly anything*
Last night I open the dishwasher to start loading the dishes, and there is a pool of water just sitting there in the bottom as happy as can be growing all sorts of bacteria, not really but go with me here, it's been like that all day. 10 yr old boy doesn't think to say "hey mom, there's still water in here" when's he unloaded it the night before... So I put it through a rinse cycle to try to get it to drain,, nope, water is still there, thank heavens there's not more water in there,, same amount, but it's just sitting there happy as a clam. Mocking me really at this point,, saying, "whatcha gonna do??"
One more thing to frustrate the hubs, two years ago, my car would've been fixed within the hour, the truck would've had heat and my dishwasher would have been taught a lesson on what happens when you talk back!
Between all this going on at home, on top of my sweetheart's health, I've got a 18 yr old young man, whose chomping at the bit to get to the MTC and start on the next phase of his life, although between you and me he's just a little too eager to leave me!, not really but I cry every time I try to figure out what I'm gonna do when he's gone.
I've got 4th quarter going on at work, and big wigs that decided that it would be a fantastically wonderful time to come drop by our store and make sure we are up to par on the BIGGEST ONE DAY SALE OF THE YEAR sale day.. and district managers pulling me in all sorts of different directions, totally new thing for me, being someone they need to talk to.
And we are trying to pay our bills with no assistance. hmmmmmm At $11/hr, 30 hrs a week, yea I can barely cover rent, and we've done great the last month or two, however, there is just no way we can pay for all these repairs on our vehicles and dishwasher and still pay our bills. (So not asking for help here!)
We were at a meeting at our church a couple nights ago and our Bishop saw us and asked how work was going. I just looked at him and walked away, I didn't want him to see me crying,,, AGAIN!... seriously I swear that man thinks I'm a mess, which I am, but who likes to show weakness?? He runs through a classroom in the building and cuts me off, as I try to avoid him, he grabs me and says in a calm rational voice, that I have a love/hate relationship with, "it's ok, You are being tried, hang in there, You're doing everything right and Satan hates that. He is working overtime on your family"
I know this, rationally I know this. All I can think is NO! Please NO! I can't deal with anymore.
You need to know that the Bishop is the only other Human being we have let into our marriage, he has helped us through so much. We can tell him anything and know we are not being judged. So I take his counsel to heart. In my eyes, where I am at right now, he is the closest I can get to my Father in Heaven short of hitting my knees and praying. So when he says something, I tend to listen.
We head home, and I troll on facebook and find this : (this is a family in Herriman Utah, that I have been following for quite a while. they recently lost their 10 yr old boy to acute heart failure, he was diagnosed with Duchenne Muscular Dystrophy,in 2005)
Here is what I read:
PLEASE, NO / PLEASE KNOW
Natalie and I left Mitchell’s room as he drifted sleep. Mitchell was slipping away. Everything was escalating and we knew time was running out. We both sat in the hall just outside his room and wept. Our tears came from a well of the deepest sorrows. I eventually looked to my weary wife … exhausted, frightened and heavy with grief. My heart broke even more because I knew this woman, who has the tenderest of hearts, loved her little boy in ways only a mother can know. The “fix it” father in me desperately wanted to make it all go away, but I could not.
There were many occasions that I prayed to God “Please, no.” I petitioned over and over that somehow … some way … my son would be spared. Yet, every medical intervention was riddled with peril. Too much was happening, too late. Every path was a dark path. Even still our prayers continued, “Please, no.”
At some point during my wrestle of the soul I received a distinct impression. After I had cried out what felt a million-and-one times “please no” I was finally answered with “please know”. What followed was a most unique spiritual experience. A peace and understanding had fallen upon my wife and me; and while we didn't have words to describe what we were feeling, we had a strong sense that we were being told “Please know, everything is as it’s meant to be. I've got this.”
Over the years I have come to understand that mortality, our life on earth, is a schooling the soul. It is an education that takes a lifetime to complete. There are books to study, things we must do, knowledge and faith we must acquire … and there are tests. Oh, there are tests.
There are tests of prosperity; what we do when the sun is shining and our pockets full or overflowing. There are tests of faith; what we do when the lights go out. Test of hardship; how we respond to our difficulties. Test of anonymity; what we do when nobody is watching. So many experiences we encounter … so many learnings, if we become students of the soul.
When I consider this hardship I pray that the child in my heart can rise above this profound sorrow. I know I can. And I will. But losing my son has broken every bone in my body, wrenched my soul and pulverized my heart. With all that I understand and have felt spiritually my heart still cries out for my son and I miss him terribly.
This hardship has taught me, however, that while I may plea to God “please no” … if the answer is no, I must change my plea to “please help me know.” That is the foundation upon which we grow.
.......
My brick wall came tumbling down, I bawled. I've been praying wrong, asking for the wrong things. What has happened to my faith? Time to go back to the basics. I am a firm believer that everything happens for a reason, I also believe that I don't always know the reason, but I trust He who does. I will pick up my bootstraps, I will put a smile on my face and faith in my heart, and pray that I will learn from this what I need to. Out of all of this I will become a stronger person, with steadfast faith in my Saviour, (I'm Canadian,, deal with the U!), I feel His arms around me every minute of every day. Sometimes I just get too overwhelmed and forget He is right there waiting for me to hand over everything to Him, so I can keep doing what I do without stress and needless worry. Perhaps this is what I need to learn from this,, that we, as a family are strong enough to say "Ok Lord,, we are letting go, we KNOW, You got this!"
Wednesday, November 6, 2013
The Wall
I think there comes a time, when no matter how strong we are, we hit a wall, it may not be for days, weeks, months or even years, but we will hit that inevitable "I'm over this wall!"
I hit my wall last night. Hubster has a really hard time with his meds, I get it, I really do. Some days he just sits on the couch and doesn't say a word, I have come to realize this is him holding his tongue. Other days he flys off the handle over simple things like cereal not being put away, or a towel used to mop up juice on the floor still laying there after hours of having done it's job. Something about being handed essentially a death sentence tends to put one on edge,, go figure...
After having a day where we are being pulled in 15 different directions and everyone at works needs you to do something right now, hey it's part of the job, we like nothing more than to walk into a happy home, with kids who are pleasant, a house that has had something done to it today, pickup up, vaccumed, something... the last thing we want or need is to walk into a home where you are again pulled in every direction, "HEY MOM'S HOME, I need this, I need that, can I have this, can you do this for me, do you remember my password to.., MOM, dad said no!"
But let's face is, being a parent is a full time job. and when your partner is down for the count, it is even more harrowing. so yes, yesterday I hit a wall,, everyone was losing it, and I just wanted peace, and quiet and to not be needed for 1 hour.. 1 second even. I locked myself in the bathroom and cried, and vented to my bestie, thanks Bestest Bestie!, and when I was done crying and venting, I laid in my bed and pulled the covers up and went to sleep, at 7:30 pm, because I was done.
I am now up and heading out the door, to do it all again, because as parents, as caregivers, and as providers, as meanial as that whooping $11 per hour seems, this is what we do, it is what I do. We get up in the morning, we get done what needs to get done, and what doesn't need to get done,,, well sometimes that can wait until tomorrow, so my floors are not vaccumed, or mopped, the family room is cluttered, the bathrooms need to be cleaned.... For now, that can wait, maybe until I get home from work,, maybe until thursday, or friday,,, who knows. Right now, they can wait.
Right now, I'm attacking the wall!! wish me luck.
I hit my wall last night. Hubster has a really hard time with his meds, I get it, I really do. Some days he just sits on the couch and doesn't say a word, I have come to realize this is him holding his tongue. Other days he flys off the handle over simple things like cereal not being put away, or a towel used to mop up juice on the floor still laying there after hours of having done it's job. Something about being handed essentially a death sentence tends to put one on edge,, go figure...
After having a day where we are being pulled in 15 different directions and everyone at works needs you to do something right now, hey it's part of the job, we like nothing more than to walk into a happy home, with kids who are pleasant, a house that has had something done to it today, pickup up, vaccumed, something... the last thing we want or need is to walk into a home where you are again pulled in every direction, "HEY MOM'S HOME, I need this, I need that, can I have this, can you do this for me, do you remember my password to.., MOM, dad said no!"
But let's face is, being a parent is a full time job. and when your partner is down for the count, it is even more harrowing. so yes, yesterday I hit a wall,, everyone was losing it, and I just wanted peace, and quiet and to not be needed for 1 hour.. 1 second even. I locked myself in the bathroom and cried, and vented to my bestie, thanks Bestest Bestie!, and when I was done crying and venting, I laid in my bed and pulled the covers up and went to sleep, at 7:30 pm, because I was done.
I am now up and heading out the door, to do it all again, because as parents, as caregivers, and as providers, as meanial as that whooping $11 per hour seems, this is what we do, it is what I do. We get up in the morning, we get done what needs to get done, and what doesn't need to get done,,, well sometimes that can wait until tomorrow, so my floors are not vaccumed, or mopped, the family room is cluttered, the bathrooms need to be cleaned.... For now, that can wait, maybe until I get home from work,, maybe until thursday, or friday,,, who knows. Right now, they can wait.
Right now, I'm attacking the wall!! wish me luck.
Saturday, November 2, 2013
Bless her heart!
I love our children, every single last one of them! They continue to amaze me as they grow into fantastic adults who make great choices and live life selflessly.
Our oldest daughter read the blog post I posted a few days ago when I dumped my entire heart on here. She decided to take it upon herself to try and help us, so she set up a website for donations,, here http://www.gofundme.com/4zgey0 Then she contacted the newspapers and radio stations in St George and asked if they would do a story on her Dad. She got a call back from one paper and they are running a story, not sure when, but it is the St George News that is doing it. So because of this, her dad knows about her efforts and it is no longer a secret. Through her efforts we have raised over $1500.00 in 5 days!
I am in awe of the love and support from friends, family and strangers. People we don't talk to or see very often or have never met have donated. We are humbled and brought to tears over everyone's generosity. We feel very undeserving of such love. Thank you to everyone who has shared her link, read our story and help, whether it be by picking Todd up in St George and taking him to his dr appt's, or taking him down here to his eye appt's , or just calling or texting him to see how he is doing.. And to you all who text call, and check up on me to make sure I am still sane. We love you all so very much, and would be completely lost without you.
The last few days have been good days, Todd has been able to do more and keep things down. Although it feels like he is surviving on his anti-nausea medication on an hourly basis.
I am off for the next 2 days so I am hoping to get caught up on laundry and at least pick up a bit today and let my sweetheart rest as much as possible, then enjoy Sunday at church with my family.
Love to all, embrace what you have today and treasure it!
Our oldest daughter read the blog post I posted a few days ago when I dumped my entire heart on here. She decided to take it upon herself to try and help us, so she set up a website for donations,, here http://www.gofundme.com/4zgey0 Then she contacted the newspapers and radio stations in St George and asked if they would do a story on her Dad. She got a call back from one paper and they are running a story, not sure when, but it is the St George News that is doing it. So because of this, her dad knows about her efforts and it is no longer a secret. Through her efforts we have raised over $1500.00 in 5 days!
I am in awe of the love and support from friends, family and strangers. People we don't talk to or see very often or have never met have donated. We are humbled and brought to tears over everyone's generosity. We feel very undeserving of such love. Thank you to everyone who has shared her link, read our story and help, whether it be by picking Todd up in St George and taking him to his dr appt's, or taking him down here to his eye appt's , or just calling or texting him to see how he is doing.. And to you all who text call, and check up on me to make sure I am still sane. We love you all so very much, and would be completely lost without you.
The last few days have been good days, Todd has been able to do more and keep things down. Although it feels like he is surviving on his anti-nausea medication on an hourly basis.
I am off for the next 2 days so I am hoping to get caught up on laundry and at least pick up a bit today and let my sweetheart rest as much as possible, then enjoy Sunday at church with my family.
Love to all, embrace what you have today and treasure it!
Tuesday, October 29, 2013
Catch 22
I tend to ramble when I blog, I have way to many thoughts running through my head. So for that I apologize now. If I dont get them out,, my head will explode, and that would just leave a HUGE mess for me to clean up, which I couldn't because well, my head would be all over the place,,, see what I mean!! :-)
With the exception of yesterday, these last couple days have been really hard. I go to bed exceptionally early, or rather try to, due to my crazy work schedule during the holiday season. Yes we are in the holiday season in the retail world, and to those of you who cry out "Let thanksgiving have it's day first!", I say,,, we did.. October 7 was thanksgiving,, In Canada, so let the Christmas bells ring. Anyway, I digress, Hubby has had a really rough few days. Between all these stinking meds he takes and struggling to keep food down, he tends to sleep most of the day. well, not really sleep, but more lay down and think his stomach calm. I leave for work and he's in bed, I come home and he's in bed. He's gotten up in between to get our youngest out the door for the school bus, and he calls me after he leaves letting me know how the morning went and how he is feeling, then heads back to bed. (I panicked a couple of times when we came home from the hospital the first time because he didn't answer the phone when I called him and I had a friend go check on him to make sure he was ok, so now he calls to let me know he woke up and is breathing)
I always ask him "did you take your meds?" and the response is usually a long pause with a frustrated sigh. I get it,, I really do. I have seen what these meds do to him. Yes they are keeping him "alive" right now. Keeping his blood pressure down, keeping his heart from growing that horrid sac of fluid around it AGAIN, keeping his kidneys from shutting down for good and his body from retaining fluid and bloating up. They are also keeping him nauseous, dizzy, light headed, foggy, quick to anger, and just about every other negative symptom out there. Seriously, it's like the drug commercials out there,, "...may cause bloating swelling, temperment issues, diarrhea, sweating, nausea, vomiting, etc etc etc, see your dr if you have any concerns" WHO WOULD WANT TO TAKE THAT?????
We have talked to the dr about this, and our dr laughed good heartedly, saying, "that's how I know you're taking your meds. If, when I ask you how are you feeling and you tell me fine, and I ask if you are taking your meds and you say yes,,,, I know you're lying" Well played dr... well played.
It's hard for me to watch my husband go through this. I am a fixer. I don't like it when something is broken and I can't fix it or make it better. And he does really really good at masking all he is going through, to the outside world, but I see it daily. I wish I could take his meds for him. I wish he had listened to me over the years as I nagged him to take better care of himself. I wish the pharmacist that screwed up that prescription hadn't been working THAT day. I wish, I wish, I wish...... I hope that anyone who is reading this blog that has diabetes learns from our mistakes. Yes they are our mistakes, I bought the groceries, I am the one who said, "we deserve a treat", and brought all that crap into our house over the years and sat and ate it with him. I share the blame in where he is at.
And now all I can do is hope and pray that whomever out there that happens to stumble upon this blog, and has that horribly silent and very deadly disease, will have their eyes opened and realize that a shot of insulin will NOT fix the high blood sugars,, permanently. The only thing that will do that is diet, discipline and exercise.
That is all,, nothing more,,, nothing LESS! I have heard of people who's diabetes all but disappears and they live with it, they don't suffer from it. I wish I had listened to them earlier.
With the exception of yesterday, these last couple days have been really hard. I go to bed exceptionally early, or rather try to, due to my crazy work schedule during the holiday season. Yes we are in the holiday season in the retail world, and to those of you who cry out "Let thanksgiving have it's day first!", I say,,, we did.. October 7 was thanksgiving,, In Canada, so let the Christmas bells ring. Anyway, I digress, Hubby has had a really rough few days. Between all these stinking meds he takes and struggling to keep food down, he tends to sleep most of the day. well, not really sleep, but more lay down and think his stomach calm. I leave for work and he's in bed, I come home and he's in bed. He's gotten up in between to get our youngest out the door for the school bus, and he calls me after he leaves letting me know how the morning went and how he is feeling, then heads back to bed. (I panicked a couple of times when we came home from the hospital the first time because he didn't answer the phone when I called him and I had a friend go check on him to make sure he was ok, so now he calls to let me know he woke up and is breathing)
I always ask him "did you take your meds?" and the response is usually a long pause with a frustrated sigh. I get it,, I really do. I have seen what these meds do to him. Yes they are keeping him "alive" right now. Keeping his blood pressure down, keeping his heart from growing that horrid sac of fluid around it AGAIN, keeping his kidneys from shutting down for good and his body from retaining fluid and bloating up. They are also keeping him nauseous, dizzy, light headed, foggy, quick to anger, and just about every other negative symptom out there. Seriously, it's like the drug commercials out there,, "...may cause bloating swelling, temperment issues, diarrhea, sweating, nausea, vomiting, etc etc etc, see your dr if you have any concerns" WHO WOULD WANT TO TAKE THAT?????
We have talked to the dr about this, and our dr laughed good heartedly, saying, "that's how I know you're taking your meds. If, when I ask you how are you feeling and you tell me fine, and I ask if you are taking your meds and you say yes,,,, I know you're lying" Well played dr... well played.
It's hard for me to watch my husband go through this. I am a fixer. I don't like it when something is broken and I can't fix it or make it better. And he does really really good at masking all he is going through, to the outside world, but I see it daily. I wish I could take his meds for him. I wish he had listened to me over the years as I nagged him to take better care of himself. I wish the pharmacist that screwed up that prescription hadn't been working THAT day. I wish, I wish, I wish...... I hope that anyone who is reading this blog that has diabetes learns from our mistakes. Yes they are our mistakes, I bought the groceries, I am the one who said, "we deserve a treat", and brought all that crap into our house over the years and sat and ate it with him. I share the blame in where he is at.
And now all I can do is hope and pray that whomever out there that happens to stumble upon this blog, and has that horribly silent and very deadly disease, will have their eyes opened and realize that a shot of insulin will NOT fix the high blood sugars,, permanently. The only thing that will do that is diet, discipline and exercise.
That is all,, nothing more,,, nothing LESS! I have heard of people who's diabetes all but disappears and they live with it, they don't suffer from it. I wish I had listened to them earlier.
Sunday, October 27, 2013
Just another day in the life....
It's been a while since I have blogged, and for that I am truly sorry. Things have been going relatively well since our last dr visit. Alot has happened. I got a new job with Macy's, which is now full time and a 25 minute commute each way. Jacob, our oldest son, got his mission call,, YAY! He is going to the Georgia Macon mission, he reports December 18. He is so ready to go, and kind of feels like he is in limbo right now. And my sweetheart is not in need of new kidneys,,,, yet.
I am so blessed to have the best husband in the entire world! He has transitioned well into a stay at home dad. I come home from work and he gets up to greet me and make me dinner, if it isn't already waiting for me when I come home. He helps out with laundry, and keeps Levi quiet when I have to go to bed early. I came home a few weeks ago from work and Todd offered to make me a salad for dinner, so I sat down at the table and watched him work. (not being sarcastic here, I really enjoy just watching my man!) He reaches into the fridge and I see him stumbling with his hands inside the fridge, I ask him if he's ok and he claims he is... then I watch as he begins to slice a cucumber. Tears fill my eyes, he is using his hands as his eyes. he is gliding the knife down his fingers and using his fingers to measure how big of a slice of cucumber to cut. I mention this and he goes quiet. He doesnt say anything. I quietly get up and grab the cheese for him (it's pregrated), and he says "No, leave it, I can do it, I have to know where things are"
We needed to talk.
My strong, tough guy, all American husband had kept from me how bad his eyesight had gotten. He didn't want to worry me or stress me out any more than necessary. Apparently me waking up in the middle of the night three or four times to make sure he is ok was not a secret. He tells me he can see shadows, that is all. He can make out shapes on good days. I don't know what to do for him or how to fix this. We have seen a retna specialist, and he was getting shots in the eyes every 6 weeks, but at $1000 a pop, that simply can't go on forever. We had stopped doing his right eye about 6 months ago because they were no longer helping it.
People that come over to visit just dont realize how sick he really is. His kidneys are still failing, which makes him excruciatingly tired on an hourly basis. He has days, weeks where he can not keep anything down, where it takes all his energy just to lift his head. Then there are days where he seems perfectly healthy, still using a cane on a daily basis, he goes about his day as if he is healthy,, although he still needs to stop and rest every so often. I watch as he stumbles to the couch because his neck is going to give out. I watch as he gets ever so frustrated that he can't do a simply thing like sort the laundry, or find a utensil in the drawer. I hold him as he cries because he says he has failed me as a husband and a father. I watch as our oldest boy asks his dad if he wants to go on a father/son date.. son's treat, and Jake willingly drives his father anywhere he needs or wants to go. I watch as our youngest son runs and grabs his dad's blood kit so he can test his blood sugars, and I watch as Levi reads to his dad the numbers off the meter, and asks "what insulin dad, and how much?"
I watch as my husband gets sicker and sicker and all I can do is pray.... pray that there is some way we can fix this.. pray that he's not taken from me yet. That is a thought that is the very frontmost part of my thoughts all day long, every day. My daily silent prayer as I leave my house is "Please Heavenly Father,, Let him have a good day!, Let him be ok when I get home"
I truly believe that everything happens for a reason, Todd, the boys and I have all learned so much from all of this. I guess we still have more to learn. I have never once said "why me,, why us,, why now?" I have always thought, "Ok the Lord knows we can handle this,,, let's handle!" and if it's not us, it would be someone else,, and honestly,, I wouldn't wish this on any one of you.
Someone tell me diabetes is an every day disease, and it doesn't kill any more. Someone tell me it's ok, they can take a shot after eating junk. Someone tell me it won't happen to them. someone tell me I DON'T KNOW! Send that Someone to come stay at my house for one week. See what diabetes does when you don't look after it.
I just want someone to tell me everything is going to be ok and soon I will have my handsome healthy husband back.
I was talking to a friend of mine about all of this and how I needed an outlet and she suggested I blog... DUH! I'm certainly up early enough. So this will become sort of like a journal for me... for those who want to follow along. And if no body reads it... it will be for me. I need it. I need to let my feelings out without putting more stress on my husband who has to put every ounce of his energy into healing himself. I try not to let him see me cry, I save it for when I'm in the tub, or right now,, while he is sleeping and I'm headed out the door to work. He'll never know. I'll come home with a smile on my face and do all I can to help him. He doesn't need my stress to stress him out. so thank you for letting this be my new outlet. {if any of you tell him what I'm saying on here I may disown ya! ;-)}
I am so blessed to have the best husband in the entire world! He has transitioned well into a stay at home dad. I come home from work and he gets up to greet me and make me dinner, if it isn't already waiting for me when I come home. He helps out with laundry, and keeps Levi quiet when I have to go to bed early. I came home a few weeks ago from work and Todd offered to make me a salad for dinner, so I sat down at the table and watched him work. (not being sarcastic here, I really enjoy just watching my man!) He reaches into the fridge and I see him stumbling with his hands inside the fridge, I ask him if he's ok and he claims he is... then I watch as he begins to slice a cucumber. Tears fill my eyes, he is using his hands as his eyes. he is gliding the knife down his fingers and using his fingers to measure how big of a slice of cucumber to cut. I mention this and he goes quiet. He doesnt say anything. I quietly get up and grab the cheese for him (it's pregrated), and he says "No, leave it, I can do it, I have to know where things are"
We needed to talk.
My strong, tough guy, all American husband had kept from me how bad his eyesight had gotten. He didn't want to worry me or stress me out any more than necessary. Apparently me waking up in the middle of the night three or four times to make sure he is ok was not a secret. He tells me he can see shadows, that is all. He can make out shapes on good days. I don't know what to do for him or how to fix this. We have seen a retna specialist, and he was getting shots in the eyes every 6 weeks, but at $1000 a pop, that simply can't go on forever. We had stopped doing his right eye about 6 months ago because they were no longer helping it.
People that come over to visit just dont realize how sick he really is. His kidneys are still failing, which makes him excruciatingly tired on an hourly basis. He has days, weeks where he can not keep anything down, where it takes all his energy just to lift his head. Then there are days where he seems perfectly healthy, still using a cane on a daily basis, he goes about his day as if he is healthy,, although he still needs to stop and rest every so often. I watch as he stumbles to the couch because his neck is going to give out. I watch as he gets ever so frustrated that he can't do a simply thing like sort the laundry, or find a utensil in the drawer. I hold him as he cries because he says he has failed me as a husband and a father. I watch as our oldest boy asks his dad if he wants to go on a father/son date.. son's treat, and Jake willingly drives his father anywhere he needs or wants to go. I watch as our youngest son runs and grabs his dad's blood kit so he can test his blood sugars, and I watch as Levi reads to his dad the numbers off the meter, and asks "what insulin dad, and how much?"
I watch as my husband gets sicker and sicker and all I can do is pray.... pray that there is some way we can fix this.. pray that he's not taken from me yet. That is a thought that is the very frontmost part of my thoughts all day long, every day. My daily silent prayer as I leave my house is "Please Heavenly Father,, Let him have a good day!, Let him be ok when I get home"
I truly believe that everything happens for a reason, Todd, the boys and I have all learned so much from all of this. I guess we still have more to learn. I have never once said "why me,, why us,, why now?" I have always thought, "Ok the Lord knows we can handle this,,, let's handle!" and if it's not us, it would be someone else,, and honestly,, I wouldn't wish this on any one of you.
Someone tell me diabetes is an every day disease, and it doesn't kill any more. Someone tell me it's ok, they can take a shot after eating junk. Someone tell me it won't happen to them. someone tell me I DON'T KNOW! Send that Someone to come stay at my house for one week. See what diabetes does when you don't look after it.
I just want someone to tell me everything is going to be ok and soon I will have my handsome healthy husband back.
I was talking to a friend of mine about all of this and how I needed an outlet and she suggested I blog... DUH! I'm certainly up early enough. So this will become sort of like a journal for me... for those who want to follow along. And if no body reads it... it will be for me. I need it. I need to let my feelings out without putting more stress on my husband who has to put every ounce of his energy into healing himself. I try not to let him see me cry, I save it for when I'm in the tub, or right now,, while he is sleeping and I'm headed out the door to work. He'll never know. I'll come home with a smile on my face and do all I can to help him. He doesn't need my stress to stress him out. so thank you for letting this be my new outlet. {if any of you tell him what I'm saying on here I may disown ya! ;-)}
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