So glad this week is over!!

This week did not seem like it was ever going to end.  It started out ok but Tuesday I had been going non stop and so I went to enrichment night to relax and Jaren called half way through to come home because he wasn't doing well at all, so I left and came home to make sure he was ok and he looked horrible his blood sugars were way high (above 600) and I had changed his insulin inset 3 times that day and it wasn't bringing his sugars down so I made him take a shot and I ran to the store to get some powerade zero to keep him hydrated and a neighbor had come over to check with us after enrichment and she called her husband to come and give him a blessing, after the blessing I knew things would get better but I also knew it was going to be a LONG night.  I made sure his sugars were going down before I let him go to bed and I made him sleep with me so I could watch them through the night, when we woke up in the morning they were 81 so I called to check him throughout the day and they went up and down all day.  I knew that night would affect the kids the rest of the week but I had no idea it would be as bad as it was, when I took the kids to school I went and talked to the teacher to let them know that we had a LONG night, they were very understanding and said they would keep and eye out.  Braxton tried to call home and make sure his dad was ok and Jaren won't answer the phone when I am not here so he freaked out and went into the bathroom and then told his teacher he had thrown up and needed to go home, so I had to go check him out, as soon as we got home he was fine.  RaKelle was home Tuesday with the stomach flu so I didn't want to leave him at school thinking that he threw up.  Thursday they all went to school and I thought everything was ok, and then they all came home from school and RaKelle had a total meltdown and started bawling so I asked her what happened at school and she was crying so bad that she couldn't talk for a minute she finally calmed down enough to tell me that since we hadn't had that much sleep she was so tired and in one of her classes she was stretching and some of the kids in her class were giving her a bad time about it and she said "mom, I can usually just ignore it and I just couldn't today I wanted to turn around and punch her" I asked her if she did hit her and she said no and then started crying again because she said that if she would have hit her she would have been in trouble by one of her favorite teachers and that made her upset.  I called her counselor at school and talked to her and she has set up a meeting with all of her teachers so that I can tell them all what she is going through so I don't have to tell them one at a time.

There has been some good that has come this week though.  Jaren qualified for a grant to help pay for some respite care, that will help out a LOT I am just so tired of falling through the cracks with everything I try to get help with.  This week should hopefully go a lot better and hopefully the kids will be able to calm down and get through the last couple weeks of school before Christmas break.

update on the Gordon House

So November has come and gone already, and I haven't written anything down for awhile.  Jaren completed his swallow therapy and it seems to have helped he isn't choking near as much as he used to be, the doctor had us come in and they did a nerve conductive test and it was sad to watch him go through that painful test.  They discovered that he has Peripheral Nueropathy in is hands, arms, legs, and feet she thinks it is from his diabetes so she told me to keep a closer eye on his sugars which is sometimes totally impossible but I guess I don't have a choice.  The week of Thanksgiving was a little bit stressful, RaKelle ended up with pink eye and while I was sitting at the doctor with her on Monday night Braxton called me freaking out because they came and took away Jaren's cane and his walker, since I wasn't home I don't know for sure who came and got it or why they came and took it they could have at least called to warn us they were coming, Thank goodness that my mom was willing to purchase a cane at Walgreens for him.  Thanks Mom!!  Tuesday Braxton came home from school and the whole soul of his shoe had come off and he has no other shoes, the kids also had a dental appt that day for their 6 month cleaning, I had to cancel RaKelle's because of the pink eye, Ashlyn has to have a new retainer with the two fake teeth in the front thanks to her accident and her mouth keeps growing and so the retainer has to be replaced every so often, they changed RaKelle's appt to Wednesday so I took her on Wednesday and they would like to get her started on Braces soon and her insurance will only pay $1000.00 so it looks like tax returns will go to braces! 

Thanksgiving day was really nice we had the feast at my moms house and both of my sisters and their spouses and kids were there and it was fun, then we went to our friends to hang out and play games and eat pie with them and it was so much fun.  Of course my mom and I and my sisters and dad all went Black Friday shopping I don't really buy a lot because I don't have a lot of money but it is a lot of fun to go hang out with them.  My sisters are crazy and they left at 11:00 Thanksgiving night and so by the time they met up with my mom and I they were starting to wear down but we still had a good time.  I didn't get up until 5 to go that morning.

I finally got Jaren upstairs to his own room where he doesn't have to walk up and down the stairs to go to bed, I know this might sound terrible but I am LOVING it I don't think I have slept this good in a long time.  Now instead of waking up everytime he moves or gets up or makes noises I don't wake up, he also sleeps much better upstairs I have put him in the room right above me so that I can still hear him if he needs me or gets up when he is not supposed to.  It was very wierd at first to sleep without him and kind of depressing just another sign that things are progressing and there is nothing I can do about it.  He hasn't had to take a nap hardly at all because he gets much better sleep now, by the night time he is worn out and he goes to bed when the kids all go to bed but that is ok for me!! The neighbors have been able to come over and check on him while I am at work so I don't have to take him to the daycare which is really nice. 

Ashlyn has been giving me real problems lately and I don't know what to do about it, I know she is trying to deal with a lot but she is so mean to me, one day she was really mad at me and told me that I suck because I never have money, I told her that I work very hard for what she has and she looked me right in the eye and said dad doesn't, I said "Ashlyn that is not fair you know he can't" and she said well maybe I should get a disease so that I don't have to do anything but sit home.  I was so hurt and upset that I locked myself in my room until I could calmly talk to her.  She has been a little better the last week and she hasn't even picked on Jaren because I told her if she stopped picking on him for a week she would earn an ice cream trip with just me! she has worked so hard to earn it.  We went to parent teacher conference and I found out that she has been faking sprained ankles at school to go down to the office with her friend who also has a fake sprained ankle I couldn't believe it, I told her that what if one day she actually did hurt her ankle and she needed to go call me or get some ice and they wouldn't let her because she has faked it so many times that they don't believe her anymore.  I think that she didn't think about that.

Braxton is doing so good in school.  The teacher said that he is a good helper and he is kind to everyone but that he is very chatty.  He is starting to have some anger issues, he gets mad so easy and freaks out and attacks his sisters, luckily he doesn't at school.  I still fight him sometimes to go to school but he is doing a lot better. 

RaKelle is doing really good in Jr. High she really likes it.  She is even keeping up with her school work.  She loves playing the piano and the flute and she is determined to play the flute and be in the choir next year.  She has joined the yearbook club so she is helping put the yearbook together for the school and she really likes that as well. 

Halloween brought up some questions

Last Monday as a family we carved pumpkins for family night, I let the kids pick out their own pumpkin and I let them carve them however they wanted they loved it, Jaren wanted to carve one too so the kids finished their's and then they each took turns and helped Jaren carve his.  I was sitting on the couch taking some pictures of them helping and Braxton came up to me and asked me a question that I didn't know what to say, he said "mom, since dad likes holidays so much and he likes when the family does things together on holidays, does that mean he is going to die on my birthday?" he then had huge tears about ready to fall but he kept it together and I told him, "no he will not die on your birthday we don't know when he will die but it WILL NOT be on your birthday" I think he has it in his mind because his birthday is April 8 and his next birthday is on Easter Sunday.  I was kind of caught off guard and I really didn't know how to respond to him but he seemed to be ok with the answer that I gave him.  He will be turning 8 and so he thinks that Jaren won't be able to baptize him so I have talked to him and told him that our Bishop has assured me that if someone has to get in the water with him to hold him up he WILL be able to baptize him. 

Jaren started swallow therapy and it seems to be helping somewhat, he has exercises that he has to do three times a day to help build up his tongue muscles.  They told me that they would like him to NOT use a straw because when he drinks with a straw it starts to go down the wrong tube, but it does come back up before he swallows it all so they said that was good, but they are worried about the aspiration pnuemonia, they have him on a diet of soft moist foods they say that will help him swallow the food easier.  He has a nerve conductive test on the 10th of November to find out how much damage all of the pain is doing to his muscles and nerves I didn't know if I wanted to put him through it but I think it will be good to have a baseline. 

I hope everyone has a Happy Halloween!!

Define Luxury

I am sure that there are many definitions of luxury, but my definition of luxury is probably a lot different than most, I would define luxury as going to bed at night and not having to worry if your spouse will wake up in the morning, taking a shower without ANY interuptions, sitting down for 5 minutes and not have to think about what I have to do next, or what will happen next, when is it my turn to enjoy things, I feel like I give up so much to provide for my family when do I get a minute to refuel so that I can keep going? I know this sounds wierd but to be honest I enjoy going to the doctor or dentist for myself because it gives me at least 30 minutes to be ALONE my doctor laughs at me when I come in by myself and he asks me where everyone is and I tell him at school or at home I am enjoying my break!!

This week I haven't had any dr. appts for myself but Jaren has had plenty, we had a swallow study done last Thursday and it was the coolest thing to watch, but they did notice some problems with his swallowing so we start swallow therapy on Friday to see if things will improve, they also told us to start thinking about a feeding tube, I got a little scared at first but then I thought about how much easier it would be to give him his medications.  He also had a evaluation for a wheelchair and to be honest the lady freaked me out a little, she told me I needed to make all of these changes to my house and that I needed to take some of my seats out of my car, I can't make changes to the house it doesn't belong to me, plus how will I pay for it? she is trying to get him a motorized wheelchair but I think that would be more work for me, I would be just fine with a manual one I called his doctor to have the prescription changed to a manual one because I can't make all those changes, if I took seats out of my car I wouldn't have anywhere to put my kids.  I feel like he really needs a wheelchair because he can hardly walk sometimes because the pain is so bad.  I don't know what to do for the pain anymore, I am having a hard time watching him go through so much pain.  We are working on getting a bed moved to a room upstairs so that he doesn't have to climb up or down stairs, Ashlyn is giving up her room so that he can have a room and I am staying downstairs in the master bedroom for now because I am being selfish and I want to be able to sleep for a couple nights without having to wake up at his every move, if the pain does get so he can handle it I hope he will be able to come back down but if not I will eventually move up there with him even though I like my room. 

Don't try this at home!!

Jaren has been in a LOT of pain this week he has had a hard time even getting out of bed.  I took him into the Neurologist this week and the doctor wants me to give him Aleve for 10 days until the gabapentin levels are back up.  I have to admit I am terrible with giving him meds when I get home from work in the afternoon so they think his levels are dropping I am not sure if that is what the deal is though Lortab isn't even touching the pain and the Aleve isn't doing anything either, he can't even walk.  It is hard to see him in so much pain.  I have been so busy this week with appts and parent teacher conference and work that I have only had time to be home long enough to give him some pain meds. 

The neurologist appt was on Tuesday at noon so I had to leave work a little early that day and when I got home I could smell something horrible so I asked him what the smell was and he said he had cooked an egg I said oh why does it smell so bad? he said the egg kind of blew up.  I walked into the kitchen and about died, he thought he could boil eggs in the microwave, well needless to say they blew up and blew the microwave door open and there was egg and egg shells EVERYWHERE.  He felt so bad, I just had to chuckle because I couldn't get mad at him, I told him he can no longer use any appliance while I am not home and he said ok I will try not too, I asked him if he was going to remember what happened and to never boil eggs in the microwave? and he said "probably not." at least he is honest!! When I finally had a minute to clean up the mess I had him help me so that he would realize what a huge mess it was.  We went to use the microwave and it turns on but does not cook anything so we have to switch it out.  So my advice to anyone reading this is: Don't try boiling eggs in the microwave, unless you want to clean up a mess, and not have a microwave anymore. 

I am still here......physically

My post was kind of a downer last time but that is how I was feeling at the time, it is getting better and I am not as anxious as I was.  We had a dr. appt every single day this week for one of us some days we had 2 appts, thank goodness for the other mom that lives at our house RaKelle some of the appts they had to fit us in and they were right when the younger kids were getting out of school so RaKelle went to the school and picked them up for me and brought them home and got them started on homework and chores it was so nice.  I hate to rely on her so much but I can't do it all by myself even if I try, it has taken me a long time to figure that out, I can't be a mom, a dad, a caregiver, a spouse, a taxi, a housekeeper, a pharmacy, a planner, and everything else I have to do, so having a child old enough to help me out has been amazing, pretty soon she will be able to drive and she has already told me that she can't wait so that she can take the kids to school for me so I don't have to, how sweet!!

We didn't have internet for a week or more because I had more important bills to pay before I paid the internet bill, I can't tell you how nice it was to not have internet I almost didn't want to have it back on but I need it for different things, that is how I communicate through email with some doctors and some other things that have to do with MLD so I had to get it back on, it also comes in handy now that RaKelle is in middle school I can look up her grades and know what she is missing and help her catch up if she is behind. 

Jaren has been in a LOT of pain this past week or two to the point where he is in tears so I called the neurologist to see if they could perscribe him some pain killers and the Dr wants to see him so we are going to see her on Tuesday.  I also started to see a new counselor this past weekend I had an appt with him on Saturday wierd day to have an appt, but he was excellent what an answer to my prayers for right now, he told me that he was into neuropsych and he knows how to read MRI's and so he asked if I could bring them in and he would explain what is going on in his brain and why he acts the way he does.  He is extremely ornery and he has been yelling at the kids alot but I am sure it sucks to be in so much pain.  I took him back to the daycare a couple days a week and they were excited to see him again.  One lady told me that I need to keep a hold of him because he is a hunk, I thought it was funny until I thought about what that would do to my kids if he started talking about a girlfriend at the daycare I never know what he will say about anything I know that it is not anything to be worried about but do the kids know? plus who knows it might wear on me too, it's hard to leave him at a place like a daycare and know that he is being taken care of but not knowing what stories he is telling them.  I know he comes home with some interesting stories.  I love being able to go to work and not have to worry about what he is doing at home and if he is wandering the streets, but it is also hard to drop your spouse of to be watched for the day.  My ward has been really helpful with being willing to stop in and make sure Jaren is safe and that if he needs anything they are there to help him. 

Please, I need some motivation

I have no motivation lately, I went to the Dr. the other day for the major anxiety I have been having and he added 2.5mg of Zyprexa to my other medication I have taken it for two nights now and the first night I could not get out of bed all of the kids were late for school but not by much, I slept right through my alarm.  Today I was able to get up but I didn't want to, I need some motivation I don't feel like doing anything at all especially when I get home from work, I don't even want to cook dinner I feel bad because I get really irritated with the kids and I try not to get ornery but sometimes I just can't help it, I went to play volleyball last night with the women in my ward to see if I just needed a break but I still didn't feel any better I just wanted to go home and do nothing.  I didn't really realize what panic attacks were until I went to the Dr. and I am having panic attacks, I can't breathe my heart starts racing, I get dizzy, and shaky and I always feel on edge lately, I sometimes have high blood pressure and normally I can control it without medication although I have been on meds before for it but it was sky high the other day 152/100 the dr said that high blood pressure is another sign of anxiety, the problem is though is I have no idea why I am so anxious I have never had it this bad before, I was even crying the other day at work secretly and not bad enough that my eyes were swollen and red but I had tears in my eyes.  What is the deal? it could be a number of things- 1) My husband is slowly dying, 2)Braxton fights me to go to school, 3) I am a married but not really, 4) I started work a couple of weeks ago, 5)my kids are all growing up and I can't stop it, 6) my blood pressure is high 7)I can't keep up on house work, 8) I have no motivation to do anything lately, 9)I JUST CAN'T DO IT ALL anymore I am tired and worn out.  Hopefully this weekend will help me find the motivation fairy and I will be back on track again next week, I have a girls night planned tonight with some friends from the insurance office I used to work for and nothing else planned this whole weekend and we only have one soccer game to go to and one piano federation to go to but they are in the morning so I can actually get some things done and caught up.  If anyone knows where the motivation fairy is staying could you please send it my way?

Back in School.......Jaren's Bday

The kids finally went back to school and so far they like it when they get there but Braxton has been freaking out everyday before school, I can't handle the crying every morning and the fake sick and lies about why he doesn't want to go to school, I went in to the school yesterday and talked with the counselor and told her that I can NOT take the hassle of getting him to go to school whatever she said to him worked yesterday because he went to school today WITHOUT a fight at all!! yeah!! Ashlyn has been doing pretty well she likes her teacher and she has lots of friends in her class, but she comes home and throws fits so I have one crying all morning and one crying all afternoon after school.  My anxiety level is so high I can't even stand it, I try to take time to calm down but then I think of all the other things I have to get done that I can't relax.  I have a hard time keeping up with work and homework and kids and caregiving and trying keep family as normal as possible in our situation and keeping up with housework and taking the kids to soccer, and feeding all of us I just can't do it all, I am trying my hardest to keep us all going but my mind races 100 miles an hour and then just when I think I can take a break I look around and see a million other things I have to get done.  I am a little bit of a downer today but I really can't be positive when I am feeling this way.

I will try to get a little happier now Jaren celebrated his 37th birthday and I can't believe another year has gone by, he didn't want a party this year because it causes to much anxiety for him and he gets ornery he wanted to just hang out with his friend Noel so we went to dinner with them and their daughter and with our kids and it was delicious, we splurged and went to The Old Spaghetti Factory because the two younger kids had a free kids meal from school! after dinner we came back to our house and had German Chocolate cake that is his favorite kind.  I am so thankful that he has made it another year we have had many, many, many, many new challenges since his last bday but we made it through.  We were able to just enjoy the day with some good friends and family. 

RaKelle loves middle school.  She went to her first school dance and she loved it I thought for sure she would come home and say that she was never going to go back but she came home and said that she was definantly going again next year.  I asked her if she slow danced with anyone and she looked and me with the most disgusting face and said "eeeewwww no that is gross" so I don't have to worry about boys with her yet one less stress for now!! she is doing so good in all of her classes they print out her grades every week and they have what they call pride time and if their grades are all above a C they get to do a fun activity, if they have any C's or lower they have to go to a classroom and make up all their missing work, she has not had anything below and A- and she only got 1 A- the rest are A's I am so proud of her she is doing so well.  I never have to fight her to go to school which is really nice.

Doctor follow-up.....Dog????? and school starts

I took Jaren in for a follow-up appointment today with Dr. Richards and it went pretty well, he is not losing weight so he isn't worried about him not eating at this point.  He did say though that he is worried about him being home while I am at work, he told me that we need to get a dog even if it is just for a companion for Jaren so he doesn't get lonely, which is not a bad idea but I don't know if I want to care for a dog at the Gordon house we can barely keep track of the humans here, the kids were so excited they couldn't stand it.  He also told me that he would write a perscription for it, I guess he really wants us to have a dog, so now we have to get it approved with our landlord and then start looking, where do I find a dog that is well behaved and will keep Jaren company while I am at work, they have dogs that detect low and high blood sugar which would be perfect for him but that could take many months to get approved with everything that has to be approved.  I am just worried about what it takes to care for a dog. 

School starts on Monday and I am so ready for it to start, the fighting is getting annoying.  RaKelle will be in middle school (I can't believe how fast they grow) and she actually went to school yesterday for a few hours they allow 7th graders to go before school starts and go to all of their classes and they have an assembly and prizes before the 8th and 9th graders come, she has been so ornery I am ready to rip my hair out, she is sassy to me about everything and she yells at anyone that is making her upset, next week should be really fun when she is overwhelmed with school starting and exhausted, I CAN'T WAIT (not)! I did go talk with her counselor at school to let her know of our situation and she was very understanding and told me that she would call her in to her office and talk with her and let her know that if she ever just needs to talk even if it is in the middle of a class her door is always open. 

Ashlyn will be in the 5th grade and she is very excited.  We went and met with her counselor last week and came up with some plans that will allow her to feel comfortable going to school and not worrying about her dad at home, he told me that it would be appropriate for her to be able to call home and check on him when she can't stop thinking about things but he also told her that if she abused that privilege and called to much she would have to lose it.  I think this will help her not be so crabby about going to school and I won't have to fight with her anymore to go.  She has Mr. Patrick this year and she is really excited because he was her teachers friend from last year.  I hope she will do well this year and she will enjoy school.

Braxton starts 2nd grade, I can't believe he is my baby, his teacher is Mrs. Selk and she sent him a postcard the other day and he carried it around with him for the rest of the day, he loved it.  I hope that he will be able to go to school and not worry to much about Jaren, he hasn't seemed to have the problems with going to school like Ashlyn has.  Before I know it he will be going away to college!! I am not ready for my baby to be all grown up. 

She made it

RaKelle made it the ENTIRE week at Brighton Girls camp, she was able to call home every night and I think that helped her a lot.  Tuesday when she called she was in tears and it took all I had to not say I will come get you right now, but she made it! she was so proud of herself and I was too.  She has informed me that she is not going next year but we will see what the year brings she might change her mind.  It helped Jaren that she was able to call home he about drove me nuts, he missed her horribly and wanted to go get her everyday I had to stand next to him while he talked to her on the phone so he didn't say anything about her coming home, by Friday he was going crazy he had been really ornery the whole week because he missed her, he was extra clingy to me because he didn't know what else to do.  The first thing he told her when she came home was you can never leave me again its to hard, by Wednesday I was ready to hurt him because he kept asking when she would be home and he wasn't very nice.  I didn't even think about how hard it was going to be for him I knew it was going to be hard on her and the other two didn't like her being gone either but that didn't stop them from fighting they fought the whole week, I didn't get to sleep through a night because they were missing her they would cry for no reason and they didn't like her being gone.  When she got home we went to the fabric store and she was able to pick out some fabric for a quilt that sis. Buchanan was making for her because she made it the whole week she chose butterflies because that is the symbol of MLD and she wants everything to be butterflies lately we were invited to the Buchanans house for family home evening last night and we were able to tie the quilt with her and she finished it while we were there so she got to sleep with a new quilt last night.  Jaren was also having a hard time because she was camping and he loves camping, and before she left we found out that some family went camping and didn't include us and his feelings were hurt and he was very upset, that is one thing that he can still do is go camping he enjoys the mountains and fishing not so much hiking anymore but he can still do some things. 

Jaren is still not eating he is eating better but not what he usually does, I am thinking it is just part of the disease and that it will never go away which will help out with the food budget!! He seems to be satisfied when he does eat so I guess I can't really worry to much.  He is very nauseas it seems all the time and he has had some severe migraines lately, I have medication that helps with the nausea but it makes him so sleepy that all he will do is sleep if the nausea is really bad I do give him some I would rather have him sleep then be throwing up all over the place.  He still wants to be playing nintendo ALL day long which most of the time is ok but he won't do his chores and then he gets ornery and yells at the kids and he can't stand when things are out of place I always have to say don't worry about it just leave it alone we will take care of it when we are finished with whatever we are doing.  He is very critical of the kids when they do chores he tells them all of the things they didn't do instead of thanking them for actually doing the chore, I have to remind him that at least they are doing something and they will get to the other things when they can, I guess they just don't do it fast enough for him or his way.  He is very hard to live with sometimes, he likes to ruin a lot of the fun he doesn't like to do anything and he gets irritated when we like to do it without him, sometimes I just make him come he doesn't always like it and then sometimes I wish I wouldn't have brought him but I don't have a choice all the time to allow him to stay home by himself because he physically and mentally can't do it.

The kids start school on August 29 and I am excited maybe the fighting will slow down a little, I also start working on that day and I am hoping that Jaren will adjust well to the new schedule AGAIN.  He just doesn't understand what keeps happening I think it is frustrating to him but now with school back in the schedule should stay the same.  I am probably going to have to take him to the daycare a couple times a week so I don't have to worry about what he is doing or not doing.  I am so grateful for the job that I have that I am able to check on him if I need to and that they are so understanding of my situation and I am so blessed to have the boss that I have she is amazing.  I am grateful for the wonderful people that I work with that care about me so much that they ask questions and try to help wherever they can.  I don't know where we will be from one day to the next everything is so unpredictable but I hope and pray that he will stay healthy enough to stay at home with us as long as I can care for him and he doesn't hurt any of us.  I have been very blessed with amazing friends that help me through some tough times.  I am thankful for the support that my family gives and for the opportunities they include us in on and their willingness to help out. 

getting RaKelle ready for camp

This week has been crazy.  I am trying to get RaKelle ready for beehive camp and I am having a hard time she wants to go so bad she saved her own money to go, BUT she can't have sleepovers, we have tried so many times and she calls in the middle of the night in tears to come and get her, she has been so excited but Jaren hasn't been doing very well the last few weeks.  I talked with the bishop and the young womens president and the bishop are trying to get it approved to allow RaKelle to call home from camp once a day to make sure that her dad is not dying while she is at camp and that we are doing fine and she needs to enjoy herself.  I can't imagine what it must feel like for the kids to go somewhere even if it is familiar and not know if there dad will be here when they get back, that has got to be the worst feeling in the world.  I try to understand what they are feeling, but this one is a hard one.

I went back to work for a few weeks, and now I am off again for 2 weeks then I go back again.  He is just getting used to the new schedule with the kids being gone while I am at work and then I am off again so I hope he can adjust again when I start working again, the next time will be more permanent though so he should be ok.  I am getting worried, he is not eating, which makes his blood sugars bottom out and he is also struggling with using the bathroom, we went with some friends and she told me that Jaren looked horrible and that I should probably take him to see a doctor.  I took him in and they can't figure out why he isn't urinating he is still drinking the same, and they don't know why he won't eat.  He says he just isn't hungry.  The doctor treated him for a prostate infection and put him on prilosec for acid reflux to see if that helps, so the medicine count goes up for awhile until they figure out what else to do.  I have to take him back in 2 weeks for a follow up to see if he is doing any better.  He seems to be really down lately as well I don't know what to do for him though because he can't tell me what is wrong and why he is so down and quiet.

My friend and I were in need of a big break so we thought about what we could do with our spouses so that we could get some time to visit alone, so last Saturday we took Jaren and Noel to the movie got them tickets and our girls wanted to go to a movie so they walked their dads into their movie got them in there seats and went to their movie and my friend and I went to dinner ALL ALONE, it was the nicest night we have had in a long, long time.  Her brother is so good about being so willing to keep and eye on the two of them but it is hard to keep track of them together, they really like being together and they have a lot of fun together but sometimes WE need a break from both of them and we like to do things together so that we can talk about the struggles we are going through.  I am so grateful that Amy and I were able to meet and get to know each other it is so nice to have a shoulder to cry on that knows exactly how I am feeling, we have a lot of fun together.

back to work.........yeah, relief

I am back to work and I can't tell you how excited I was to go back to work to get away from the house for a few hours a day.  I am only back for a couple weeks and then I am off again until after the new school year starts.  I am very thankful though because at the end of the school year I didn't know if I would have a job in the fall and last week I found out that I will, what a HUGE relief for me what an answer to my prayers that day.  Jaren has been really down this week so I am trying to be happy and upbeat for him but I am so NOT in the mood to be happy, I am done with being let down and done with people talking behind my back.  I know people talk and I know sometimes some people don't like what I do or some of the decisions I make for my family and sometimes they are frustrated with me but maybe they should trade me places and see how they like it I guarantee they will change their mind after living in my shoes for 2 hours or less.  Not to mention I DON'T have time for drama.  I work my butt off to take care of Jaren and the kids and a lot of times I get left on the back burner, and sometimes the kids don't get what they want but we deal with it and sometimes I don't have a choice.  A haircut every once in awhile is soooooooo worth it even if I don't really have the money sometimes you just feel sooo much better when you look nice and your hair is done. 

I knew that since I wasn't working in the summer that I wouldn't be getting paid so I took my last paycheck and paid off my CAR, I can't tell you what a relief that is to me knowing that my car won't get towed in the middle of the night because I was behind on payments or that I don't have another car payment but of course when you pay off a car it starts to have problems so of course the minute I sent the check my spark plugs went out on me, I don't have air conditioning, and my window only rolls up and down sometimes, so when someone asked me the other day if I felt like I was getting a raise with no car payment, NO I DO NOT, I am not getting paid for 3 months and I have to pay to get it fixed.  I really am just done with everything in life right now so I am taking a sleeping pill (which means the anxiety is very bad today because I never take pills to help me sleep because every time I do we end up in the hospital because I don't care about things in the middle of the night)  and going to bed so that I can hopefully feel refreshed tomorrow and be able to be happy again for my kids, they are really the ones that suffer when I am not in the mood to put up with things.  I try my hardest to put on a happy face for them but sometimes I just can't do it. 

how much more.......

I am so done with fighting, how much more fighting do I have to take before I totally lose my patience? I am getting to the point where I can't take much more before I freak out.  I made them ALL go to bed early tonight because today has been nonstop fighting.  Jaren doesn't think he has to help with anything at all and he has been downstairs in his bedroom playing nintendo of course ALL DAY so I have had to deal with the fighting and whining alone, I know he can't do much to help anyway, but it would be nice for him to at least be upstairs with me and back me up when I can't take anymore.  It was nice to not have Jaren involved in the fighting because usually he IS involved he is usually the one that starts it.  I am not sure how much more I can take before I go to work again next week for a couple weeks, I don't know if I am going to be able to leave the kids home together, but I know for a fact that I can't leave the kids and Jaren home together.  I am not sure what is going on with the kids but they can't seem to get along at all.   I haven't taken him back to the daycare lately because I can't afford it but I have taken the kids to a sports activity at the local rec center to get some of their energy out and it seemed to help for 1 day.  I wish I could do that more for the kids they get to swim and meet new friends but I just can't do it that often because it gets pricey and I have not had any work since June 1st.  I go back on July 26th for summer school for 2 weeks and then I am off again for another couple weeks, we have made it work and we have been able to get the things that we need and hope that we can continue to be blessed with the things that we need.

His swallowing is getting worse I think it takes him forever to eat anything lately, he can't eat spicy food anymore his mouth and stomach can't take it.  The other day I caught him with his insulin pump off and his shirt off I asked him why his pump was off and why his shirt was off and he just shrugged his shoulders and said he didn't know, I said why is you pump off? he said I felt good today I thought I wasn't a diabetic anymore, I asked him then why his shirt was off and he said I really can't explain that one.  I told him that diabetes doesn't work that way it doesn't just go away for one day and he needs to keep that on, it could kill him if he left it off and I hadn't have seen it off. 

at the end of my rope

I am at the end of my rope the fighting this summer has somehow got to stop.  Jaren is not use to having to share the nintendo and the tv and the kids are tired of him playing 24/7 but I don't know what else to do with him, he doesn't want to do anything else.  The kids want to play too and they get bossy and tell him he can't play then he whines and throws a tantrum and is ornery for the rest of the day.   I have tried my hardest to keep everyone busy but I am getting worn out.  I can't keep up with everything.  Somedays are better than others but some days I just want to run away for a week or send one of them away for awhile. 

Thank goodness for the Elder's Quorum president in our ward called today and asked to take Jaren to a movie.  They must have had a feeling he was driving me absolutely in sane today.  I was going to take him to the daycare tomorrow just so that I can get a break but now that he is gone for a couple of hours I can enjoy some FREE time and re group so that I can handle him tomorrow. 

On a good note, Last night was a really fun night we went with some friends to the ReAL game and it was a lot of fun.  Jaren got to sit by his friend and they talked the whole time not sure about what but I don't know that I want to know.  Noel is Jaren's friend and he has an unknown leukodystrophy so they act almost identical and they have a lot of fun together of course only if me and my friend are there.  It would be scary to leave the two of them alone.  I was able to sit and visit with a friend since she knows what I am going through, (Noel is her husband) and watch the game and the weather was perfect.  The kids were great and they enjoyed themselves to.  I am so thankful for friends that surround us with their support and love. 

Another milestone in our family that happened this past week is that RaKelle my oldest turned 12 on Saturday I can't believe it she is getting so much older and I can't believe I will have a child in middle school already, can't they just stay little and never get any older than 5?  She is a great daughter and we love her a lot.  She carries a lot on her shoulders helping me out and she does an amazing job.  She has earned money this summer to pay for her camping trips with the young women, she has taken care of many animals for neighbors that go on vacation and she LOVES it.  She has saved every penny.  Our family would not be the same without our sweet RaKelle.  Teen years next year hope we are ready for it!!

I miss the man I married!

I have been thinking a lot today about the things that I am missing out on with a disabled spouse.  I love him but it is a different love.  It is very hard to know that when you are having a conversation with your spouse and you know he will not remember a word you talked about after the conversation is complete.  I miss telling him everything, we used to laugh and talk about everything, now I say things to him and it just upsets him I have to really be careful with what I tell him.  I know I sound like a baby but somedays are harder than others.  I can talk to him and tell him how good the kids were at something that day and he just looks at me and says oh wow! and then I can say the exact same thing 20 minutes later and I get the same exact response, sometimes he will tell the kids good job but sometimes he has a hard time knowing what to say to them. 

Have you ever had a conversation with someone over and over and over again? They ask the same questions over and over again, it just get so overwhelming and hard to cope with some days.  He has his good days and still we talk about the same things.  I miss being able to stay awake at night and laugh at things that we did that day that were so stupid that it makes us laugh, and laugh, and laugh, until we finally laugh ourselves to sleep.  I even miss fighting the way we use to fight, we don't fight about money anymore because he has no clue how much money we have how many bills we have and how much I make at work, now we fight about not doing things that will hurt him or doing things that will hurt the kids and why he is cooking something that shouldn't be cooked.  I know this sounds dumb but I want to be a newlywed again and fight over stupid things like money, and the dishes, and who is going to put gas in the car.  Sometimes I feel lonely and he lives here with me.  I can't take anything for granted anymore, every memory and everything we do together even though it isn't the same we still have to remember them and treasure those memories FOREVER.  Just remember when you are getting upset with your spouse about something, or you are fighting and you can't stand them, remember that someday you will wish you could be fighting about that again because you never know what tomorrow will bring.

Here comes summer!!

I can't believe another school year has come and gone already.  I now have a 2nd grader, and 5th grader, and the oldest one starts middle school, that scares me a little bit.  I am so proud of them they did awesome this year in school.  This week has been so busy with the end of the school year stuff, RaKelle had a ton of activities that were going on at school because they are no longer going to be in Elementary anymore and I realized how hard it is to try to be the mom AND the dad when they have sports day against parents all the moms get to sit out because the dads are all there to play but I have to join in so that the kids don't feel left out, I don't mind usually but it is hard to be the only mom out on the field, when something breaks like bikes or other things that the kids use I am the one that has to fix it.  Braxton wanted to learn how to ride his bike and I was the one that had to be out there teaching him.  Our church is having a Fathers and Sons outing tomorrow night and I don't feel like I can take Braxton with a bunch of men, thank goodness my parents live close by and my dad is going to take him to the activity so Braxton will not be left out. 

Now what to do all summer? We are just going to play and have fun, I am still going to take Jaren to the Beehive House a couple times in the summer so that I can have a break from him and maybe get some things done without having someone right behind me all the time. 

Jaren came and told me yesterday that he has been hitting himself now in the face, I didn't know what to say so I started to laugh I thought he was joking, and I asked him why he was doing that and he told me that he just gets mad that his brain doesn't work right and so he hits himself, After I realized he wasn't joking about the hitting I was really nervous about what would happen next.  What do I do with that? How do I tell him to not hit himself?  he won't remember the conversation.  I will not be able to leave him at all without anyone here I am afraid of what I will come home too.  Thank goodness I am done with work so that I can be home with him.  I guess next school year when I go back to work he will have to have care everyday so that he doesn't hurt himself. 

I would like to know more about the brain so that I can understand the way he thinks and the things he does that are so out of the ordinary.  Sometimes I wish that this trial in our lives could just be over but that would mean Jaren would not be with us anymore and then that would bring many more trials and heartache so we will just keep truckin along and live day to day. 

weekend full of drama!!

We usually have some sort of drama on the weekends but this weekend was horrible, Ashlyn has been dealing with the stress of some things that I am going through and she was not a very nice girl this last weekend.  First it started off on Friday morning when I was trying to get them ready for school she freaked out on me because she was running late and I told her I was going to leave her and take the others to school, she got really, really mad and she told me that she was going to get a gun and shoot me I told her she had to go to her room until she could calm down.  Then Saturday we had soccer all morning and she played good but the afternoon she was terrible.  She started a tantrum about 5:30 and it kept escallating and she kept getting worse until I couldn't handle it any longer and I freaked out she told me that I was the meanest mom ever and she was going to call the cops and put me in Jail, and sarcastically I told her that would be great I could sleep the whole night with out kids or husband waking me up, I could get fed 3 meals a day and not have to clean anything up, WRONG thing to say RaKelle went to her room hysterical because she was afraid that I would like jail so much that I would want to stay forever and then everyone would die because she doesn't know how to take care of dad, I assured her that I was being sarcastic and I really don't want to go to jail I just couldn't handle Ashlyn anymore that night, then RaKelle totally spilled the beans on why she was so terribly ornery that afternoon, come to find out her she was with some friends and they were watching youtube and she asked them not to watch a video because it would scare her and they watched it anyway she was so upset, Jaren was yelling about everything I did that day I couldn't do ANYTHING right.  Bedtime could not come soon enough that day.  Then Sunday came I got up and got ready for church and the kids all up and ready and we went to church, Braxton would not sit still in Primary and Ashlyn was being so naughty I almost just took her home, instead I sat her in a corner in the hallway and she was not allowed to participate in the activities that everyone else was doing.  She got worse and worse so I walked her down to the nursery and opened the door and told her if she is going to act like a 2 year old she was going to be with the 2 year olds, she finally calmed down long enough to go to class and sit nicely for the very end, I was at the end of my rope by the time we got home and I sent them all to their rooms for an hour so I could calm down.

Thank goodness the weekend finally came to an end and now I need a weekend to recover from the weekend.  I took Ashlyn in to her counselor today and he did some amazing things with her to prove to her why I get upset and how much I am dealing with in terms that a 10 year old can comprehend.  He got out about 10 really heavy books from his bookshelf and set them on my lap and told Ashlyn that he wanted me to carry these around all the time and I could never have a break, he then asked her if I would get worn out and she said "yes" and he said " I am pretty sure that would wear her out, so now lets pretend that these books are the burdens that your mom is carrying around all the time" and she smiled and said "ok" and he asked her "what are some things that you can do to help take off some of the weight?" and she said "I could stop fighting with my brother and sister" and " I could clean my room" and "I could be nice to my dad and my mom" everytime she said something that she had control over to help ease my load he would take a book off of my lap and gave it to her,  I think she realized how much I carry around all the time, she has not had ONE tantrum this afternoon and evening and she came right home and did her chores.  We have not had one fight either.  He also gave us some good tips on how to work together and get things cleaned up together after dinner so it isn't all on me.  He explained to her why I was so willing to go to jail that night and that sometimes moms' get to a point when they just can't take anymore.   I love my kids and I can't imagine my life without them but why must they push me to the edge? I know that our lives are crazy and they are not "normal" but I try my hardest to make it as normal as I possibly can.  Hopefully this weekend can be less dramatic! there is always hope I guess.

Good experience for our kids!!

We did something today as a family that the kids want to continue, we had to run to the grocery store and we were by the Beehive House, which is where Jaren goes while I work, the people were so excited to see him and to meet his kids. RaKelle played the piano for them and they really liked that they kept telling her to keep playing, after we left we talked about some things and decided that they would like to go there once a week during the summer and do crafts or play games with them and sing with them. I think that everyone will enjoy it and then the kids will know that dad is taken care of when he is there and they don't have to worry about anything while he is there. Thank you to the Beehive Home for allowing him to go there and enjoy conversation with people instead of sitting in front of the TV all day.  It was fun to see the people interact with him and tell the kids how much they enjoy him being there.  It made him feel really good.  One of the men their even went into the kitchen and got the kids some fruit snacks. 


We met a new Neurologist and she ordered blood work and MRI, the blood work came back really good and one of the medications they have him on for mood is low so if they need to they can up the dose a little and still be ok with numbers.  MRI results came back and she said that the brain is stable it hasn't changed since his last MRI in 2007, which is a very good thing (I think), but the MRI does not show mental decline, so they do what they call a mini mental exam that consists of asking questions and having him do things and that score was 18/30 I thought it was an ok score because his last score was 11, well come to find out it is not a good score anything below 28/30 is not a good score, he improved from the last mini mental exam, he must have had a good day that day, he has a hard time with more than one command at a time. 

It seems like things never end though, I feel like I can't keep up with everything, bills, Jaren, keeping the house cleaned, homework, Jaren, laundry, dishes, soccer practice, games, Jaren, dr appts, SLEEP, work, oh and did I mention Jaren? he keeps me on my toes I really do not understand some of the things that he does he doesn't even know why he does some of the things he does, like make eggs in a glass bowl on my stove, good thing I happen to be home at that time, that would have been a huge mess to clean up. 

what now.......really?

I am just going to vent a little so if you don't like it, don't read it.  I think I can say I am done with trials this week, it seems like they all hit at once.  I can't take much more before I have a meltdown.  Please stop hounding me!! I finally have some nights where Jaren sleeps and I am up because of everything I am trying to deal with.  I don't even want to answer the phone anymore because I am afraid someone will want something and I just don't have to energy to talk on the phone.  I just want to crawl into bed and sleep my problems away, but I don't think that will ever happen.  I am trying my very hardest to keep us above water and I feel like I am failing miserably.

 

We went and met with a new neurologist and she was really good. PLUS she is so much closer than the UofU.  She wanted an updated MRI and I am interested to see what the progression is, he has not had one since 2007. She was very up front about telling us that she is going to treat him symptomatically because there is nothing that they can do with MLD. We assured her that we knew that and we just wanted to be treated symptomatically because we know there is nothing anyone can do to change the diagnoses. I think she will be very thorough and she will do everything she can to make him as comfortable as possible.  We had blood work and an MRI so now we just wait for them to call us back and let us know what is going on. 

Decisions, decisions

Why are there so many decisions to make in life? I had to make a really tough one this last week, after Jaren spent that evening in the hospital I knew I had to take action and find something that would help me out.  I knew that the Beehive house took people for the day so I finally made the decision to take him up there during the day while I was at work.  I know that if I had someone checking on him during the day then we could have avoided going to the ER.  I took him on Tuesday for the first time it was very, very difficult and wierd to drop your adult spouse off at a daycare, I wanted to cry all the way to work but couldn't because I didn't want to teach 4th graders with swollen red eyes.  He was really excited to go there he got up and got ready on time and we took the kids to school and then I dropped him off.  He was ready when I came back to pick him up but said he enjoyed it.  Everyone there really liked him and they said on our way out the door "Don't forget about us, we are always here" They can't wait for him to come back.  He asked our 11 year old if she would go in one evening and play the piano for all of the residents there, of course she said yes.  I feel like my kids are learning so many different things and learning about so many different ways to be compassionate to others with disabilities from going through all of this stuff with their dad.  They are more aware of how people with disabilities get treated and they are so much more caring about disabled people.  RaKelle keeps asking if I have called to ask when she can go to play the piano. 

I have been trying to avoid taking this step because I knew it would be hard, but after spending 9 hours in the ER I knew something had to happen.  I am trying to stay as positive as I can about it all but it is going to be difficult when he can't remember us and I have to make the hardest decision ever to put him in a home.  I hope I don't ever have to do that.  It was extremely nice to be at work and not have to worry AT ALL about him I knew he was being taken care of and I didn't have to call and check up on him and remind him to take his sugars and then get home and find out he didn't because he forgot after hanging up the phone.  I am sure a decision like this seems so easy for most people but to me it was very hard.  I don't know how he will react to things like this and I am not sure what will happen if he comes to a point where he is calling the other women at the nursing home his girlfriend because he has no idea what is going on and why he has to be there.

what a crazy week!!

This week has been a never ending week.  It started out ok but as the week went on the more challenging it got.  Wednesday came and when I got home from work Jaren had been throwing up all day and was really dehydrated, I thought maybe if I gave him a shot of insulin and change his pump site and make him drink a lot of Powerade Zero, he would be ok because that is what we usually do, he couldn't keep anything down including the powerade zero.  I took him to the ER because he was so dehydrated his voice was high and raspy and his lips were sticking together and his tongue was stuck inside his mouth.  They registered us at the ER and we sat in the waiting room for 3 HOURS, he was not getting any better his heart rate was 115, and he kept having to run to the restroom so he didn't have to puke in front of everyone in the waiting area.  They FINALLY called us back into a room and we sat for another hour waiting for them to start some fluids, the doctor came in and looked him over and they finally started an IV to get some fluids in him, they did blood work, the doctor then said he would be back after the blood work results were in the nurse was excellent and she was very caring and she was really concerned about Jaren.  She came in many times to make sure he was comfortable and to see that all of his needs were being met.  The results came back and the nurse told us that the White Blood Cell count was extremely high and that they were also worried about the Lactate levels they were also high.  Once he had 2 bags of fluid in him they retested his blood to make sure the Lactate level was down, the lactate level came down BUT the white blood count was still really high. 8 1/2 hours later the doctor came back in and told us that we could probably go home but that the white blood count worried him but the IV fluids made him look and feel a ton better so if he were to let us go home we had to follow up with our family dr on Thursday and we had to check his blood sugars every 4 hours even in the middle of the night.  We got home about 11:30 pm from the hospital and went to sleep for 4 hours and then back up 3 hours later to go get the kids from my moms so they could go to school.  We went to see our family dr and he didn't know why the hospital dr didn't start him on an antibiotic not only were his white blood cell count high the BAND white blood cell count was high and those are the cells that fight infection, Dr Richards started him on a heavy antibiotic and told us to follow up at the hospital lab with more blood work to make sure the blood cell count was going down.  Another night of no sleep because we had to get up again every 4 hours to check blood sugars, by Friday I was extremely exhausted and everything would set me off. I sat on the couch on Friday evening and cried for 2 hours. 

The doctor never called us back on Friday so I figured no news was good news, I looked up his labs on the website that he has with IHC and it showed that the blood cell count went down a lot, so I fell asleep Friday night and slept until Saturday morning, Yay a full night of "normal" sleep for me, which is not that long anyway but it sure felt good.  The kids have been extra clingy this week because of all of this especially Ashlyn, but we will make it through.  Thanks to my dad for waking up after a long night at work to pick up the kids from school and taking them to soccer with you to keep their minds off of everything.  Ashlyn only called me 2 times while we were there I was amazed.

Saturday was our 13th anniversary and of course he doesn't remember what day it is let alone what the date was, I asked him if he knew what we were celebrating today and he looked at his watch and said "I think so, I think it is our anniversary" I was very glad he had remembered.  He then said Happy Anniversary.  I couldn't have been happier that he remembered to say those words to me.  13 years ago we knelt across the alter not knowing that we would not be together for a long amount of time on this earth but knowing for a fact that we would be together for eternity, that is very comforting to me.  We were able to go to an amazing restaurant with some awesome friends that celebrated their anniversary this week as well, her husband has been diagnosed with and unknown leukodystrophy so she knows first hand how I am feeling.  We had an amazing dinner thanks to her friend that owns The Wild Rose at the District the food was delicious and the service was great and they wanted to do something special for us because they see how hard it is for my friend and so we did not have to pay anything for dinner.  It is an expensive restuarant but well worth the money, I know we will never be able to do that again because we would have to save forever to go there again.  The kids all stayed together at our friends house and not one of them called us while we were out which made it even better to know that they were not fighting and they were all getting along.  I can't express how thankful we were to be treated like we were the most important people in the world. 

The week started out LLLOOOONNNGGG but ended really, really well.  I am still trying to catch up on much needed sleep but I am doing a lot better today than I have been all week.  I totally unloaded everything on my friend the other night and she just listened to me and cared about me and we had a good cry today, sometimes a good cry helps. She was on her way to a birthday party for her daughter and she STILL didn't tell me to suck it up.  Thanks Mary for being an amazing friend and always making time for me to whine, and complain.  You are always there when I am down and can't get back up.  Thank you for being my best friend my entire life, I couldn't ask for a better friend.  I just hope that I am as good to you as you are to me. 

now what?

I am beyond my stress breaking point at the moment.  Hospice has decided that Jaren is too stable to be able to stay on hospice so they are taking him off of the hospice program which is good that he is stable enough to not have hospice but what am I supposed to do? they are coming tomorrow to do the exit paperwork and he will have to give back his cane, and his walker, and he won't be able to get meds anymore through them.  I have researched taking him other places but they charge to much for care I would be working to pay for him to have care what a waste.  I am frustrated that when you leave hospice that they have to take everything away.  With MLD we fall through the cracks with so many other programs that I get so frustrated and angry that there is not more to help people in our situation.  Medicare is giving his pump supply place problems and not wanting to pay for his pump supplies because he is on hospice so I have been fighting with them because hospice will do nothing for his diabetes at all, he has not had supplies for his diabetes since December because of Medicare.  I am so tired of fighting with everyone about everything just to get something for him.  Now I have more on my shoulders because I will have no help from hospice, I will not call hospice again unless I absolutely need it I don't want to get help and then have them swipe it out from under us again, I can't do it this week has been an emotional roller coaster that I don't have time for or the patience for.  The diabetes supply store contacted me earlier this week also to let me know that he has to keep track of all of his blood sugars and there has to be at least 4 a day for medicare to keep the supplies, how on earth do they expect me to track it when he doesn't even take his sugars regularly because he can't remember how to take them or doesn't take them because he can't remember that he needs to take them. 

Soccer is starting this week also and the kids are excited but all I can think about it how am I going to do it all and keep the kids involved in activities? I just can't do it all, the kids might miss a week or two of practice because I can't be in forty places at once.  I will try my very hardest but I can only do so much before I shut down to a point where I can't function.  Hopefully when I get used to no help from hospice I will be able to get on a different schedule and be able to do MOST of it without having a breakdown.

I guess I have something more to learn with all of this stuff that is being thrown my way, sometimes I am just in survival mode and just keep going.  Sometimes I wish I could just have a spouse to talk to about things and not feel like I am talking to a child that doesn't understand anything I am talking about.  I just hope that I am learning enough that I will not regret any of the decisions that I have to make.  I want to be able to face my kids and say I am doing my best and I know you didn't have a "normal" childhood but look what great kids you have turned out to be because of the trials that we went through together.  Now that I have complained enough I have to go get him ready for bed so I can get some sleep to wake up and start all over again. 

need to vent!!

I am so frustrated right now I could scream, they are going to drop Jaren from Hospice most likely in a week, because he is too stable.  Now what they have helped me out so much I don't know what I am going to do, not to mention now that we won't have hospice anymore we are losing everything his cane, his walker, all of his meds so frustrating.  I can take him to a day program but it is $8 dollars an hour I will be working just to pay for his care.  Needless to say this week has been a living hell.  I called to make an appointment with his neurologist because with hospice we can't see the neuro but if they are going to drop him I have to take him in and get meds and a cane or a walker I have called two days in a row to get an appointment and the "person" that makes the appointments for his Neurologist is covering for someone also and so I have left 2 messages and not one phone call.  I think I want to change my mind about bring on the challenges, I think I am done for awhile.  So the daily routine we have is about to change AGAIN which means more for me to do.

Then why do some people get embarrassed for the things that Jaren has to do or use to help him? it just isn't right, if you can't accept him for him and the equipment that he has to use then don't come and see us or go with us anywhere.  Why do some people just not get the fact that we are NOT normal but we are STILL  human and he also has feelings just like everyone else.

I am having one of those weeks, I can't do anything without him standing right behind me over my shoulder telling me how to do it different and how to, I make something for dinner and he doesn't like it or I ask what sounds good for dinner and he says I don't know, so I suggest something and it never sounds good.  The nintendo playing is driving me absolutely nuts, I can't get him to do anything lately and then I can't get the kids to do anything because they want to play nintendo with him when they get home from school.  Thanks for listening to me gripe.

Jessica and Brian were so nice to take us snowmobiling this last weekend, we had a great time, the kids enjoyed it so much. It was really cold but we still had fun. Braxton was in 7th heaven because he rode with Brian and he did some fancy stuff with the snowmobile and Braxton couldn't wait to go to school to tell his friends that he got to do some cool tricks. They were exhausted that night and went to sleep very quickly it was great. Thanks Jessica and Brian for taking us!!


Ashlyn will be turning 10 on Sunday, I can't believe it, she is growing so fast, and she is acting so much better maybe she will give me a little break until she is a teenager.   Our youngest Braxton will be 7 in two weeks, he is growing like a weed and hasn't stopped.  RaKelle has been asked by our bishop to sing a solo in church she is amazing with anything that has to do with music, she will be singing this Sunday, I don't think she is even nervous she will do an amazing job.  I wasn't sure if she would be able to do it loud enough but I went over with her to practice the other night and I couldn't believe how amazing she sounded. 

A DAY IN MY SHOES

I just want to write a little about what a day is like at our house, the day begins at 7:00 am I usually get up and get myself ready for the day and then get the kids up and ready about 7:30 am getting them ready is sometimes not that much fun sometimes they fight, sometimes they don't want to get ready on time and they sit around.  I am trying to get Jaren set for the day in between telling the kids to brush hair and teeth and shoes on, getting Jaren ready for the day is just as tiring as going to work.  I have to get meds ready for him, make sure he takes his sugars, and eats breakfast and sometimes I have to stay right next to him to make sure he takes his meds, if people are coming over to see him either the nurse, or a volunteer from hospice I have to make him aware so that he doesn't get scared when someone knocks on the door, I have to tell him that we will be back in a few hours and that if he needs anything to give me a call at work or on my cell.   I feed them breakfast and we are out the door by 8:15 am on a good day.  I then go to work from 9:00 am to 1:15 pm I work with 4th graders and Kindergarteners and make copies, and sub in classes that need some help or if another aide isn't there.  I get home from work and make sure Jaren gets lunch and give him more meds.  I then start some laundry or dishes and then it's time to pick the kids up from school.  When the kids get home from school they have a snack and then they do chores, I make the kids do chores because I can't do it all myself.  I have to put Jaren's name on the chore chart also because he needs to do chores too, and he hates doing the same things over and over every week.  Our chore chart consists of living room, dishes, bathroom, garbage and sweep, those are the daily chores that they rotate weekly, and every Thursday they have to sort their own laundry so that I can wash it on Friday's on my day off then the weekend they get to fold it all and put it away.  After chores are complete I try to get them to do homework while I am making dinner, we eat between 5:30 and 6 pm on good days, during soccer season and when things come up we don't eat until later.  After dinner we watch a little tv and try to get the rest of their homework done.  Then it is about time for bed so we start the bedtime routine, I give meds to the ones that need it, and scripture study and family prayer then the kids go to bed, I can't go to bed until they are asleep or I have kids in bed with me.  I also can't go to sleep until Jaren goes to sleep or he will get up and wander or do things that he shouldn't be doing.  In between all of my day to day fun I have to make sure Jaren is taking his insulin and his blood sugars.  I then get to go to sleep and hope that I get more than 3 hours of sleep in a row, then the alarm clock goes off and it starts all over again!!

I felt like I needed to share with others what it is like living in my shoes even for one day, I have probably left out a ton.  Somedays are not as stressful as others but some days I don't want to get out of bed especially when Jaren didn't sleep that well the night before.   I am not trying to get pity I just feel like some people do not really understand how hard it is to feel like a single mom and have a spouse living in the same house but can't do a lot of things that most spouses can. 

one of those weeks

This week has been one that I do not want to remember, Jaren woke up with pink eye on Monday in both eyes, and he has pneumonia.  He has been on heavy antibiotics and drops for his eyes and the eyes are looking better but the coughing is still horrible and it sounds awful and like it hurts really bad.  Because of the infections I can't keep his sugars below 200 which is really high.  He is not a very fun person to be around when he is sick, he is ornery, and he whines, and mopes around all day but if I were him I wouldn't even want to get out of bed in the morning so I should just be thankful that he got up today.  He doesn't sleep well at night either so when he is sick it is worse, and when he doesn't sleep I don't sleep I have to stay up with him and make sure he doesn't wander. 

We went to the diabetic doctor on Tuesday and she would like to take him off of the insulin pump and put him on an insulin shot that he would only have to take 2 times a day once in the morning and once at night, which could be a good thing because he would only have to take his sugars twice a day, but his diet would be very strict which means I would have to lock up the cupboards when I am at work and what would happen if he goes low while I am working I would not even know until I came home and he was passed out or something.  Why do some decisions have to be so difficult? Well if there were not difficult decisions we would not learn anything, but do all decisions that I have to make have to be so hard? I can't talk to him about what he wants because he doesn't even remember talking to the doctor about it, so I am on my own.  I can't wait until this week is over, it has been a stressful week and I just want to crawl in bed and stay there until things get easier!! too bad that won't happen anytime soon so I better just take a deep breath and suck it up and hope the week will end better. 

One question I have this week is why do I feel like I am alone?  I feel like I can't hang out with friends anymore because of what we are dealing with and I can't always get away to do the things that others get to do.  I know I have a lot to deal with but don't shut me out because I am not like normal moms or wifes.  I like to do things with friends even though I don't get to stay out for a long period of time, and sometimes I might have to bring along a child or two. 

quick update

It has been awhile since I posted last, I have been so busy with work and the kids school stuff, and Jaren, and soccer season starts soon so I have been working on soccer things since I am on the board.  This month seems like the longest month kind of wierd since it is the shortest month it just will not end!!

Jaren is doing ok he has ups and downs this week has been a down week he has come down with a cold and it has knocked him out completely I think he might be back on the mend this week (hopefully).  Our social worker from Hospice was able to get in contact with the Beehive Home for the elderly and they do day programs for a cost, so she is now working on figuring out a way that he can go to the Beehive home so he doesn't have to be home every day all by himself.  Wednesdays and Fridays Hospice has volunteers that come in and sit with him so I am trying to get him into a program on at least Tuesdays and Thursdays and possibly Mondays. 

I still enjoy my job very much, I work with some amazing people and I enjoy working with the kids that I work with.  The kids are keeping busy with homework and RaKelle and Ashlyn are in the school choir so that takes up some time also.  RaKelle and Jaren and I were able to go to Middle School orientation a couple of weeks ago, I can't believe I have one old enough for Middle School.  She is not very excited she is a little nervous, she decided she wants to play the flute.  This next year is going to be an adventure for all of us.  Ashlyn is really excited for soccer to start again, and she is doing really good in school.  Braxton is the funniest kid he says the craziest things that make you laugh and then he laughs and his laugh makes you laugh harder, needless to say we have a hard time with family prayer.  I don't have much time to do a lot, Jaren's care takes most of my time, but I am happy to do it (most of the time) sometimes he is more work than I want to even think about.  Thanks to the Elders Quorum presidency that took him to a movie this week.  I am so thankful to have good friends close by.  Thanks to Mary and Greg for listening to me complain and anything and for the help that they give me and their willingness to do anything for me.  They watch the kids on short notice a lot and they never complain.

Hello Reality, Welcome to the Gordon House

This week has been crazy and a bit of a reality check for us.  Jaren has been having a hard time with bladder control so we called hospice and they of course were really good and brought some stuff to help out with that, We also made an appointment with McDougal Mortuary and met with them today, that was the real reality check, WOW I knew funerals were expensive but I guess you don't realize HOW expensive they are until you sit down and crunch the numbers.  The lady we met with was really, really sweet and she cared about the situation it seemed, and was so very, very helpful, we picked out caskets and we were put on a payment plan so that I won't have to come up with the money all at once.  I was surprised at how they made it so comfortable to talk about without making it horrible to think about and to plan.  I am so glad we took this important step in the planning and preparing process now I will know for sure what he wants and I DO NOT have to make all of the decisions by myself.  I am really shocked at how they can work payments out for any budget the payments are very reasonable and doable.  It was still very hard to think about, we are still young I should not have to be planning a funeral, I know, I know you should always prepare for stuff like this, BUT I think it would be much easier if we didn't HAVE to think about it and that we could plan it because we wanted to not because we know what is coming!!

After we met with the mortuary I had to take another trip to the Doctor, this time for me.  I have a really bad sinus infection and I let it go on to long because I have had a dull headache for about a month and just figured it was stress, I woke up this morning and my top teeth hurt so bad and my face felt like it was going to blow up.  What a long day!!  The hard part about being sick and being a mom and a caregiver is I don't get a day off I still have things that need to be done and people to take care of, so hopefully the meds will work really quick and I will be feeling better really soon.

Challenges!! Bring it on!!

I think every year starts out with really, really hard challenges.  This year has been no different, the first week was ok, last week was extremely draining.  We went to 7 different doctor places none of them for Jaren! I took the kids to see their counselor on Monday and there appointments are each an hour long so we were there for 3 hours but I don't want to drive up there three different days back and forth.

Tuesday I went to another appointment for me yes it was nice to have time by myself even if it was at a doctors office, but I was a little frustrated by the time my appointment ended I wanted to cry.  We had a incident a couple of weeks ago where RaKelle and Jaren got in a fight when I was not home and RaKelle got yelled at by Jaren and it scared her she was hysterical, I talked to her about it and she said she was afraid and she didn't know what to do because her dad had never ever yelled at her before I made the two of them talk about it, I then realized that I can not leave them alone with him he can't handle the pressure, so of course I was frustrated because I will never be able to have me time without either some of the kids or Jaren.  I went to the bishop and we came up with a solution that when I need to have some me time I would find a babysitter for all of them or for at least some of them, we then had a family meeting together telling them the plan and they all agreed that was the best thing.  I can NOT function without some ME time at least once a month I will have a breakdown.  I talked to RaKelle's counselor about the incident and he helped her work through some things and I talked to Jaren's doctors so that they could change some things so he wasn't so irritated with everything.  I then told my counselor and she told me that she had a legal obligation to turn us into CPS that totally freaked me out, I wanted to talk about it so that I could figure some things out not for her to tell me that she was going to turn me in. 

Now for the next day, Braxton came home from school and he was really whiney, he said to me mom do I have pink eye? my eyes are burning, I said "no" and felt him and he was burning up with a fever of 102.2 I gave him some motrin to bring the fever down and I took him in because he had a really bad cough, they started him on an antibiotic and sent us home.  The next morning he woke up with a croupy cough so I called our regular doctor and they fit him in that morning, we went and when the doctor came in he said " I am worried about his blood pressure, can we take it again?" they took it again on the other arm and he said " that makes me worried his blood pressure in his right arm is higher than the blood pressure in his left" so they did an exam and then said can we check your blood pressure again.  They took it 10 times and he was so brave he just let them do what they needed to do.  The doctor then said I don't think we are going to treat the croup yet but I think we need to do further testing on the blood pressure thing.  I guess when the blood pressure is higher on the right arm than it is on the left it means there is something not right with the heart, they wanted to do an EKG, and an angiogram but they decided they wanted to start out with x-rays so they sent us straight to the hospital for x-rays.  The doctor called that same day with results telling me that everything looked fine but that everytime he came in to the doctor they wanted to check his blood pressure. (talk about a scary day).  I then went and pick up the girls from school and RaKelle informed me that she thought her thumb was broke, back to kidscare. Last time I didn't believe Ashlyn when she broke her arm so I figured I would take RaKelle in to get an x-ray, sure enough it was broke in two places. 

Jaren actually slept all night on Thursday and of course I was up with Braxton all night with croup we went outside at 3 to clear it up so he could sleep.  Nope no sleep he could breath better, but he wouldn't go back to sleep. 

Now for the ending of the LONG week, We had the hospice doctor here on Monday and he checked Jaren out, new Medicare rules are making it so that the doctor has to recertify the hospice patient the nurse can't do it anymore.  Friday the nurse from hospice and the social worker came over and told us that we probably wouldn't be able to stay on Hospice much longer because he isn't declining physically enough it is all cognitive,  How stressful that is to hear I don't want him to decline faster but I also don't know how I will be able to do it without there help.  I guess I will go back to calling a ton of places again, I don't know that I can take the rejection again but I have no choice, I am determined to get the help that we need. 

I thought I was ready for the new challenges we would be facing, but I started to change my mind and then a new week started, even though the challenges are still here I am ready to face them so BRING IT ON!!! some days I might have to pretend that I can handle them and then fall apart when nobody is watching but we will get through it somehow with the help and support from friends and family that help us through a lot of things.  I know we only go through the things we can handle and that we will learn from the challenges, what in the heck am I not learning by all this that I need to learn?

New Year, New Challenges!!

It's the beginning of a New Year, yay we made it another year! but with a New Year comes new challenges, Christmas was wonderful this year, we had so many angels watching over our family and we were taken very good care of, I am amazed at how people are so giving even in these hard times that the world is experiencing.  I am sure it wasn't easy for some of the people that helped out.  We had a secret Santa, I don't know who it was but if you read this blog a huge THANK YOU to you for helping make this Christmas a memorable one for our family, we might not have another Christmas together.  I was also able to stay home over the holiday break because I work at a school, we did a lot of fun family things together, which makes it more apparent how blessed I was to lose my job earlier and be able to find a job that I can be home when I need to be home.

Now the New Year is here and the challenges of the disease are very apparent, Jaren is still on Hospice and will re-certify AGAIN this month so another month of looking for all the stuff that is going wrong.  I went to breakfast with a really good friend over the holiday break and her husband mentioned to keep 2 seperate journals, one for the good to look at and one for the not so good, what a great idea.  Thanks Brandon and Ronni. 

Jaren is still doing ok, he has been in a tremendous amount of pain and a lot of meds for the pain, which means his legs are not as stable as they have been, he was using a cane and was starting to trip and not walk so good with the cane so they brought a walker for him which will help stabilize his walk a little better.  He qualified for Medicare and that is another challenge for us to get all the paperwork straight and what they pay for and what we have to pay for and who does what and when, WOW what a change.  I don't even know if they will pay for his insulin pump supplies, it would be nice to get everything in one letter and one mailing instead of getting paperwork every single day and trying to figure it all out, I think they would SAVE a TON of money if they only sent paperwork one time instead of daily.  I seriously have 3 files that have Medicare and Social Security stuff in them and they are packed full.  We are excited to start the New Year and see what we learn this year from the MANY challenges we will face together.  Thanks for the support of everyone that has helped us along our journey and those that will continue to stick by our side and support us, through the easy and the hard times!!