It's that time of year again!

Our family has been very blessed this holiday season, we won a family portrait sitting at FotoFly Photography.  They did an amazing job and it was so much fun.  We were very happy with how the pictures turned out. 

We also won a holiday lights makeover for the outside of our home from FM 100.3.  They are amazing!! They supplied Jaren, and I and the kids with some special glasses that when you look through them the lights look like snowmen or snowflakes it is really really cool.  Below is a picture of what they look like through the glasses.

We are so very thankful for the many blessings we have received this year for the holidays.  We are so thankful that we are able to spend another Christmas together as a family!  We never know what life will bring in the coming New Year but we will cross that bridge when we get there, sometimes you just have to live day to day and thank Heavenly Father that we made it through another day!!

Someone once said to me I wish I could win things like that.  I thought about it for awhile and decided that I would love to not win things if that meant that I would not have a husband that is dying.  But the reality is, is that his life will end before it should. 

I have also had to think a lot about Medicare because Jaren has now been on Disability for 2 years and at that time they automatically qualify for Medicare, I should not have to think about Medicare until we are very old, but I have to, so much paperwork.  He has had a very very hard week this week with many things his memory is horrible this week,  the pain he is suffering from is very difficult to listen to he is in severe pain and has had to take a lot of pain meds this week.  He has also been suffering from a cold and has been coughing like crazy he gets bronchitis so easy that turns into pneumonia that I get worried when he gets a cold, I asked his hospice nurse to listen to his lungs when she comes over and she has listened every time she comes over, so far he has been clear, but she pointed out to me that being on hospice we had the choice to treat him if he does get pneumonia or bronchitis because of hospice we don't have to treat him, BUT the infection could cause him to go septic, so then we are faced with another decision, with him being so young I would definantly treat it, but I had no idea that we actually had that decision to think about it, I just always thought that when he gets sick he goes to the doctor and they give him medicine that will hopefully help him get better.  That was kind of a rude awakening to think about the possibility of that being untreated could cause his life to end much shorter than we had even anticipated.

So much to be Thankful for

With Thanksgiving just this last week I have been thinking about what I am thankful for. I have so much to be Thankful for, I am thankful for my kids and that we are still able to enjoy Jaren and that he still knows who we are. I am thankful for my health without it I probably wouldn't be able to handle the things that I am dealing with right now. I am thankful for the friends that we have and for the many hours that they kidnap me and take me out for an hour or so. I am thankful for my family that helps me with the kids and Jaren so much and that they don't complain when I call and ask them to do things for me. I am thankful for the job that I have and for the bosses that I work with, they are so understanding of my situation that I know I am meant to work there.

I am thankful for the new friends that we made this last month, she knows exactly what I am going through her husband acts the exact same as Jaren, She is a huge support to me, we can talk and now exactly what the other is saying. Jaren and her husband get along really well, the first day we met them Jaren said to me "I wish we lived closer to them, he would probably be my best friend." they have a daughter that is 5 days younger than RaKelle and they understand each other also, they can relate to each other, there are not many friends out there that have to hold their dad's hand to cross the street, or babysit their dad when their mom has things to get done.

Sometimes it is hard to be thankful for things that can not be helped, I am thankful for the blessings and the many people that have come into my life because of MLD but I can NOT say that I am thankful for the disease it is hard to sit back and watch your husband act in a childish way and not know why he is doing the things he does. I try not to dwell on the negative side of the disease but lately I have not had a choice, to be on Hospice he has to be declining physically and so we have had to watch every little thing that has declined in his abilities to do anything, he has to recertify for Hospice every 2 months so now that we are done with the recert for hospice hopefully we can start looking at the positive again for a couple of months at least to get us through the holidays.

What to do?

I am not really sure what to do now days. I am struggling with the fact that I am working and not being able to stay home and take care of Jaren, not to mention I can't seem to get anything done when I work. I am having a hard time with the fact that Jaren sits home and plays nintendo all day, I need to find something for him to do instead of vegging on the couch all day but he can't go out walking unless someone is with him and he can't drive so what do I do with him? I don't really know what to do at this point. I came home from work one day last week and he was wandering the neighborhood thank goodness I came home when I did so he didn't get to far. Hospice comes in on Monday, Wednesday, and Friday but I am still trying to find something or somewhere for him to go on Tuesday and Thursdays. I am feeling guilty that I am not doing enough for him and that he is going to just get worse if I can't get him off the couch.

I am struggling with things that happen to people everyday in life, Braxton came home with a note from school saying that he needed glasses I know it is little but that is huge to me everything that happens is one more thing that I have to think about and do something about. I don't take much time to think about things I just have to do it and get it done so I can check it off my list. We went to the dentist today and no cavities but he stated that RaKelle will need braces in the next couple months, and Ashlyn is going to need a new flipper soon so she doesn't have to go with out her two front teeth from her accident that happened a year ago. Sometimes I just wish that I would only have one trial at a time but living with MLD is a trial day in and day out,and it will never end, and what would I learn if everything wasn't dumped on me at one time. I wish that MLD was the only trial that I had to deal with but that will never happen especially with kids. Thanks for listening to me gripe I just feel like sometimes I can't get out from under and it seems that things will never stop and I sometimes NEED a HUGE break!!

The big day is over!

My sister Jessica got married this past week, it was a long day for us. Jaren did really well he was extremely exhausted but endured through it so that I could be there the whole time for my family, the kids did very well also. They were married in the Draper Temple and again I was there alone but it didn't seem so bad this time, maybe because there were others that were by themselves. We are very excited to have a new member of the family "welcome to the family Brian!"
I am really enjoying my job and the hospice nurse still comes to the house 2 times a week and I get another massage this week yeah!! the social worker also comes at least once every 2 weeks. I have stopped asking members of the ward to come in and check on him the other two days because they never show up when they sign up, it isn't worth it to send a sign up around and have nobody even come, even when they sign up to be here, someone told me maybe I should call them the night before and remind them but I don't have the time to be calling people to stop by I guess I will try a different route on those days.
Jaren actually came to church today also, the kids had their primary program so he came to watch the kids sing and say their part they did an excellent job we were very proud of them. Thanks to both sides of the family for coming to support the kids.

Reminiscing

I thought I would sit down and write a little bit because I haven't written for a while. I forgot how hard it was to work and still be a caregiver, it is very difficult, but I enjoy my job I get to go out of the house for a couple hours a day.

I have been thinking a lot about weddings because my sister is getting married in two weeks, I have been thinking back to when I was married and thought that we would be living a perfect life together, I would not change getting married but I can't help but wonder how life would be without MLD and what other challenges we would be faced with. I enjoy getting involved in preparing for Jessica's wedding and enjoying the showers that I am able to attend. I enjoy getting my kids involved in helping out with preparations they love it. I am also having a hard time with dealing with the fact that I am not married to the same man that I fell in love with, I am now a caregiver/spouse and that is very difficult to deal with lately.

Jaren has been in a tremendous amount of pain the last couple days he hasn't slept very well which means that I don't sleep, his legs have been cramping so bad that he has had a hard time walking even with the assistance of the cane. His memory continues to go downhill, I can have the same conversation with him 20 times a day and he doesn't remember any of the conversations. He is enjoying his time that he gets to play nintendo while I am at work and the kids are at school, he has a very good friend that comes over to play nintendo with him on Monday afternoons and he really enjoys it (thanks Jason). Hospice is still helping me out with his care and other things that come up with MLD. Our nurse is amazing and she is so personable and she acts like we are her only patients. Some days I totally unload on her and she acts like she knows what I am going through even if she has no idea. We are so blessed to have such amazing people in our lives.

I will try harder to keep up with the blog I sometimes just feel very overwhelmed, and very exhausted after a full day of taking care of him and the kids and also working and cleaning!

September 19, 2010

Yesterday was an amazing day, We started out by taking Braxton to his soccer game and met my dad there so that he could take RaKelle to her soccer game so that we could go up to Bountiful for the iRace that Teamgive did as a fundraiser for MLD awareness and to help find a cure, it was very touching to see how many people came out to help MLD patients and the support that people give. Jaren was acknowledged as well as the other patients that are living day to day with MLD. Nikki and Callahan Williams are amazing people and parents they are the ones that are behind Teamgive and the fundraisers, they did a great job. Next time I will post about it on the blog so that we can get more supporters down in the Salt Lake Valley area.

After we were done at the iRace we met my dad back at my house so that he could pick up Ashlyn to go with him to take RaKelle to her Piano Duet Festival so that I could attend a bridal shower for my sister Jessica, we had a lot of fun. RaKelle did really well at her festival she scored a superior, and thanks to my dad for taking her to the festival so that I could be with my mom and sisters and meet Jessica's future in-laws they were a lot of fun and very nice.

I wanted to post about an open house that I am having at my house on September 25, 2010, from 1p.m.-5p.m. It is a Mix-A-Meal Open House, Jaren's cousin Mindy will be here to teach how to make your own mixes. come and see their complete line of kitchen tools and gadgets from Norpro, Bosch mixwers, hand and electric grain mills, canning equipment, dehydrators, Flirty aprons, snowcone makers, cookbooks, and water filters. Enter a drawing to win a FREE onion blossom maker! Bring a friend!

It has been awhile

It has been awhile since I have posted anything. We have been very busy getting the kids ready to go back to school, family reunions, soccer, and I got a job!! I know it will be difficult to go back to work but I need to do something to stay afloat.

I will be working at Heartland Elementary as an aide, I will work Monday thru Thursday for 4 hours. I am worried that the kids will fall behind in school again and Jaren will have to be put back on meds but I know this will help us a lot. I have gone to all of the kids' teachers and expressed my concern and they are so good to work with us. Jaren will need care while I am away and Hospice has stepped right up to help out, the nurse will be coming in 2 times a week, and the social worker has put in a request for a volunteer to come at least once a week, and she also called a patient advocate (I didn't know that patient advocates even existed) he has been so helpful, he has been meeting with all of the senior centers in our area to see if I can take Jaren there a couple times a week and the best part about it is, is it will be free and I don't have to do ANY of the calling myself, I am tired of getting turned away it gets discouraging. The hospice program has been a blessing in our lives they are so good at what they do, and our nurse is amazing.

I started taking the kids to a new child psychologist to help them cope with all of the stuff that is going on and he seems to be getting somewhere with Ashlyn, I hope it continues she is a very shy person and she doesn't talk to counselors much but she talked to him A LOT which was very encouraging. I had to find Braxton a psychologist because he has been having anxiety, I leave the house for a minute and he calls me and says "mom, you need to come home I can't breath and my heart hurts." I took him to the family physician to make sure he really wasn't having heart problems and he suggested to start taking him to counseling. He had a major meltdown when he found out that I had to go back to work. He came and asked me if I could have a talk alone with him so we went into my bedroom and he melted and started bawling I asked him what was wrong and he said to me "what is going to happen to us?" and I said "what do you mean?" he said "what is going to happen to us if dad dies and you have to work and there will be nobody here to calm us down, or take care of us." I picked him up in my arms trying my hardest not to cry and said "Braxton, family is more important to me than a job, if it doesn't work out and you guys are worrying I will figure something out, I promise I will be here for you guys I will not leave you to take care of yourself." He was fine with that answer and calmed down. Wow I don't know if I can keep doing this, it is a very difficult subject to talk about to children, I try to be very open with things and try to be available whenever they need me.

Help from friends and family!

We have some awesome friends and family that are so willing to help out. My good friend Nikki Pearson decided to start a donation account for our family for people to donate to if they wanted to at any Zions Bank under Jaren Gordon Donation. I am so thankful that we have friends that care enough to help us in any way they can.

Jaren's cousin Mindy also was looking for a way to help us out and so she has decided that if you would like you can go to www.preparednessplus.net or www.mixameal.com and when you check out use the coupon code jamiegordon and you will receive 5% off your order, and a portion of the proceeds will go to Jaren. If you would like to order via phone call 800-588-5412. They specialize in dehydrated and freeze-dried foods, hand and electric grain mills, dehydrators, solar ovens, water filters, 72 hour kits, canning equipment, food storage cookbooks, non-hybrid seeds and sprouts and kitchen gadgets to fit any budget. If you don't know where to start and would like a free consultation please call 801-226-4188.

what a day, week, month!

This month has gone by way to fast. We have attended many family reunions which have been very fun. We were able to go camping with my family up Logan canyon to Guinavah-Malibu we had so much fun, and great food, and even better company. We loved it even though there were mice yuck. The first night we were there was a bit challenging Jaren has a hard time adjusting to new places so the night seemed very long, his blood sugar dropped low in the middle of the night that first night and it took us an hour to get it back up to normal range so we could go back to sleep. The second night got a little bit easier and he slept a little bit better. Saturday we went down into town and attended the Burnside family reunion it was a lot of fun to see family that we haven't seen for at least a year, the nice thing about it is we will get to see them all again in October when my little sister gets married.

Yesterday was very overwhelming for me Jaren had a really hard day with doing anything. He was trying to change his insuling pump site and couldn't figure out how to do it that is the most prominent thing I can remember him doing yesterday. I do remember telling him a million times to do one thing and he could not or would not do them it was very frustrating. I try to be as patient as possible but sometimes I have to just sit down and think to myself maybe tomorrow will be better and hope that it is.

Today all he wants to do is sleep, which can be overwhelming for me because there are things that need to be done. Sometimes I feel like I am on my own for everything I have to make dinner and lunch and breakfast and then they expect everything to be done for them. I also have a hard time balancing the kids and Jaren they all need so much attention I feel like I have a hard time keeping up and trying to balance I feel like I am being pulled in a million different directions and sometimes I just snap and freak out and then I have to put them in timeout or myself in timeout so that I can calm down and relax.

Hospice has been a GREAT support to me it has helped me out so much and made it bearable to deal with the crap I am dealing with, I even feel like I can now venture out and look for jobs again, we have found him a really nice day program that we can take him to if I have to go back to work. I even applied at a couple places and had an interview for Jordan School District as a reading aide or math aide. I am not sure how the interview went but I really enjoyed at least trying I don't know if I will get the job or not but if not I guess I will find other things that will work.

August 7, 2010

This week has been crazy! so much to do and so little time. Jaren is now walking with a cane and it has helped him a lot, he is also on a medication that helps with nerve pain, we were told that the disease is eating away at his muscles so the new medication will help with that. The hospice nurse also brought out an E kit(emergency kit) which has morphine in it for instant relief hopefully that will help with the terrible pains he has been having in his legs, it also has medication for sleeping at night you know there is a problem when he wakes up at 3 AM and plays nintendo and thinks it is morning and has only had 3 hours of sleep because he has a hard time sleeping at night. I have a hard time staying awake with him at night because I am exhausted by the time night time comes and I need my sleep he can sleep during the day and I can't usually because I have kids to take care of.

I did have a great week with friends this week I was able to go to dinner with a childhood friend and she works for a neurologist so she was able to help me understand some of the things that Jaren is going through. It was so much fun catching up with each other I hope we can keep in touch and do that more often.

We were also able to go spend the evening at Cherry Hill with the ward for a ward party that was so much fun, we enjoyed ourselves a lot we enjoyed hanging out with the ward and going swimming.

The summer is coming to an end and I am not looking forward to the kids going back to school, we have enjoyed being together so much that it will be difficult to have a quiet house again they will all be in school all day now. We are looking forward to the rest of the summer with many family reunions and some camping. It is hard to believe that the summer is almost over.

Hospice

I was tired of waiting for the nurse from the neurologist office to call me with information for Hospice/palliative care so I researched it myself and called a hospice/palliative care place asking for info they immediately sent out a nurse and a social worker to help our family live with this disease. The nurse came out and explained everything to us and she stated that they are here to help us I was a little worried at first because they say that hospice is the end of life care that scared me a little bit but when she explained it to me she said that it is for people like Jaren that have a terminal illness and there is no treatment for it. The social worker came out yesterday and talked with us about different things that might be worth checking into for some resources in the community, not only that but she stated that she would do the calling for me so that I don't have to get so discouraged, what a relief that is for me. A different nurse came out yesterday because our nurse is on vacation and she was asking Jaren some questions I left the room and he told her some things about his pains and things that I had no idea about. He was having a lot of pain in his leg yesterday and he rated it a 10 on the pain scale I had no clue he was in that much pain, she stated that she was going to call the doctor and get him something stronger for pain. He also told her that he is having a harder time walking and she asked him if he would like a cain and he said "yes" I had no clue he was feeling like that, I think he is trying to keep me sheilded from how he is really in that much pain. I guess I will leave the room everytime they come over but stay close so that I can hear everything that is going on.

Post Vacation

We have been home from vacation now for a week and a half and I can't seem to shake the depression. I have no motivation to do anything, my house is a mess and I don't really care I thought it was from exhaustion from being away from home but I can't get that crappy feeling away. It probably has something to do with the fact that I am not working and that I am the provider of our home it has been a great thing for the kids for me not working but very wearing on me.

I have been thinking a lot lately about how really alone I am when parents are divorced they can call the other spouse and ask them to do help run kids around to soccer, to baseball, to dance, to piano, to anything really but I don't have that luxury, please be thankful for the chance to be able to have help with the kids sports and everything that they are involved in and know that even if you don't like it please say thank you to your significant other or your ex for helping out!!

I am hoping for a great week this week and hoping that I can shake this feeling of no motivation and get in gear and get things done this week

Reflections

I have had a lot of time to think about things these last couple weeks. We had the opportunity to go on vacation up to Washington State to see my brother and his family. I have been thinking a lot about how hard it is to travel with Jaren when we are home the neighbors can come and take him out or I can go with someone even if it is only for an hour but when you go on vacation I was with him 24/7 with no breaks it got overwhelming, we took a trip to Seattle for a day and it stressed me out big time. First of all there were a ton of people at the market place and on top of that I didn't want to lose Jaren or the kids it was stressful but very fun a lot of cool shops that sell things their fruit there is AMAZING. Washington is a very pretty state very green. They live on a navy town in Washington and was walking distance to the ocean it was so cool seashells everywhere. We were able to walk down to the ocean on the 4th of July and see all of the fireworks, it was cool to see them over the ocean water.

My brother and his wife went through the LDS temple for the first time and all of the members of my family that were able to be there came and it was really fun, they also had some long time friends that traveled up to Washington to be with them on their very special day. They were also able to be sealed together for eternity to each other and to their adorable children. I did a lot of thinking while we were at the temple, I was wishing that I went to the temple more with Jaren because now he isn't able to go and I have to go by myself it was kind of difficult to see the others being able to enjoy the company of their spouse in the temple. I also had time to think about what it means to me that Jaren and I were sealed when we were married so we will be together for eternity and whatever happens to him I know that I will see him again. In Utah we take for granted the fact that we can walk to church and be there in 5 minutes, or 5 minutes driving to the temple. In Washington we had to drive an hour and 30 minutes to get to the temple and 30 minutes to even get to a church house.

I am so grateful for the opportunity that we had to go see them. I miss them a lot. I am so grateful that we were able to stay at their house with them and everything that they helped us with while we were there, and to my awesome parents that let us ride with them so we didn't have to spend all our money on gas! Thanks mom and Dad.

I enjoyed seeing my little brother and his wife and how much they have grown since they have had to live away from family and friends. Their little boys are growing so much and they are learning a lot. It is really amazing to see how much they have grown spiritually since they have been away. I hope we will get to go back some day to see them again.

I also thought it was really cool to be so close to military base around the 4th of July, and how appreciative people are for the wifes of military men for allowing their husbands to go out and be gone for months at a time to fight for our freedoms, and how patriotic the city was, and how thankful they were for the men and women that fight for our country.

Day with the Doctor

We had another appointment with the neurologist this past weekend and it went smooth. I took a list of questions with me to ask and she took the time to answer the questions I had. I asked her why she did not want to start him on the Alzheimers meds and she stated that she has researched it and she said that nobody has ever been treated with alzheimers meds that have MLD, she didn't know that I was not working and she did not want Jaren to try something that she didn't know what the outcome would bring while he was home alone, she stated that sometimes the meds can make the patient more aggressive, she said she is willing to give it a try knowing now that I am home with him but she would like to give the Depakote another try before trying something different. She asked him to fold a piece of paper in half and set it on the floor and he could not figure out how to fold it in half he kept folding it into thirds and then he just gave up and threw it back on the table, after we left the office I was wondering what that kind of stuff means, and what is going through the doctors mind when he can't fold the paper in half. She also mentioned that she would like to start working on getting Palliative care for him which is like hospice but when you are on hospice your life expectancy is supposed to be under 6 months with palliative there really isn't a life expectancy limit, but it will help me out with respite care so that I can have some freetime to myself and she stated that it would also somehow give the kids a break I am not really sure how it works yet but I should find out this week I hope.

Beginning of Summer

Yay!! school is finally out for the summer. I love having the kids home for the summer, plus it is one less thing I have to do during the day when they are out of school. I love being home with the kids in the summer this is the first summer I have actually spent it at home, before I was working at the insurance agency I was always crossing so I was never really home, I LOVE IT!!!! The kids have been so helpful we are able to actually get the house organized we have been doing a project a day and it doesn't feel so overwhelming. We are planning a trip to Washington at the end of this month to see my brother and his family they are going through the LDS temple it will be so nice.

We have a busy week ahead of us, tomorrow RaKelle has to have 2 teeth pulled and then Friday we have another appointment with Jaren's neurologist, I have a list ready to take with me for all of my many questions, including what the reasoning is behind not letting him start Alzheimers meds. He has been having a hard week also so I am glad he is going in on Friday, some days he is so on and he knows everything and somedays he has no clue what is going on. Today I asked him what day it was and he had no idea, I also asked him what year it was and he also had no clue, somedays are hard to see him like that he will ask questions sometimes that make no sense or say off the wall things and I will look at him and say do you know what you just said and he says "NO" did I say something. Another thing that has been driving me crazy is he is deathly afraid of spiders and it was never a problem before he makes one of us be downstairs with him because he is so afraid of them he wants someone to be there so that they can kill it. He woke up in the middle of the night one night and jumped out of bed and said why do spiders always have to be in my bed? I sat up and there was a little tiny tiny spider crawling it was smaller than an ant, needless to say I didn't sleep a whole lot that night because he was so worried about spiders. Some nights he sleeps well and doesn't wake at all some nights he is up every hour. He also has little ticks that he does, like bite his teeth, clearing his throat, and now he does this little noise thing I haven't figured out yet how else to explain it, it isn't like a moan but it is very disturbing especially when you are sleeping! I will update after we make a visit to the neurologist and hopefully we may get some kind of answers to some of my many questions.

May 28, 2010

I have a lot on my mind right now so I am just going to write it all down.

I met with our bishop the other day and talked to him about how we are going to survive when our tax returns are gone and what I would do with Jaren during the day and that I can't put him in a home for 90 days. He firmly believes that I need to be home with the family right now and he is so willing to help me find ways to earn a living and still be able to take care of Jaren and his needs and also with the children. Bishop Sundberg is a great person and he has helped us in many many ways. We are blessed to have him as our bishop right now, there is a reason that he is our bishop for the time being.

Our family also had the opportunity to go and see How to Train your Dragon, we all loved this movie,there was a very important person that treated us to the movie and he made us buy popcorn, the kids were in 7th heaven. We go to the movies sometimes but we usually wait until they are in the dollar movies and then we usually don't buy popcorn but it is good to get out somewhere together and the dollar movies are not that expensive to take the whole family. Thank you so much to that special person that allowed us to go see that movie together and get popcorn and we were even able to buy drinks!! you truly are a great person.

May 28, 2010

Today was a day that will be forever missed when Jaren decides to move on to the next life. What a great day it was Ashlyn's father activity day at school and she was so thrilled when Jaren was able to make it to her school and spend the afternoon with her. She kept telling me that she would remind dad that he has to throw the ball soft when they played Bombers which is like dodge ball, and he had to kick it softly in kickball. She loved every minute of it they got to eat lunch together and just spend some time together and can I tell you what she has not picked on her dad once today and he hasn't picked on her so nice for me. Tonight we were sitting at the dinner table and Jaren says today was so much fun that I can't wait to go next year, the problem with that is that we don't have another 3rd grader for 2 years so he won't be able to go next year. I hope he can make it to Braxton's 3rd grade father activity day what a blessing that will be.

We also got to attend a fun run at the children's school, and to see their faces when they crossed the finish line was amazing. They were excited that we were able to come and see them even if they didn't win 1st place they ran the whole way and did a great job. Maybe I am a baby but I was almost in tears when they came around the corner smiling ear to ear because we were there, and because we won't always have times like this forever.

Emotional breakdown

Our oldest daughter RaKelle had an emotional breakdown the other night and I was so glad that she opened up to me and talked to me about it. She wrote a composition for a piano recital that she had a few weeks ago and called it "Sweet Heaven" her teacher saved it on a thumb drive and played it on an electric piano it was beautiful, she has been taking piano since October and I am amazed at how fast she has learned. Anyway I found her in her bedroom crying and I asked her what was wrong and she threw herself in my arms and started crying saying she didn't know why, I asked her if she wanted to go somewhere private and talk and she said "yes" I was a little shocked she does not open up to me very often. She said she was thinking about the song she wrote and she told me that the song was written for Jaren and she just started thinking how hard it will be when he passes on, she asked why does it hurt so bad and it feels like I will have a hole in my heart forever. I told her you will have a hole in your heart and it will never get filled and nobody will ever take her father's place and the hurt will get better with time but we don't know how long it will take. I went with a friend the other night and she stated that we will be surprised at how much we have already grieved but it will not make it easier we just might be ok faster than someone that passes suddenly. Thanks to wonderful friends that help me through rough times.

Braxton's Letter

Dear Dad,

I love my dad because he is the best dad ever, he is so nice to me and cause he is the best dad ever. I love him so much. I am so nice to him too. I do the dishes with him, I'll clean my room, I'll watch a movie with him and play star wars with him because he is the best dad ever.

Love,
Braxton

Braxton is just learning how to spell and write so I wrote his letter but I wrote everything that he said, I didn't change any of it. I love this letter writing.

Ashlyn's letter

Ashlyn's letter needs a little bit of background before I type hers. Ashlyn is 9 she has been having these horrible nightmares one was about her riding her bike and her dad was standing on the sidewalk and she ran over him on her bike and it killed him, and he letter states some things about that and I didn't want people to get the wrong intentions. She also picks on Jaren and they fight constantly.

To Dad.
I love you dad I hope you will never die because I love you a lot, I never want to kell you please don't heart(hurt) me if you don't I won't heart (hurt) you because I love you a lot I never want to kill you if you die all (I'll) be sad please write back on the next page
Love Ashlyn

They are loving this letter writing memory book, they keep saying we can have these letters forever huh mom? I am so glad they have an opporunity to share their feelings on paper and be able to get a letter back from their dad while he is still capable of writing his feelings down.

Letters to Dad

We have been finding ways to keep memories of Jaren we have decided that each of the kids will keep a notebook that they will write letters to Jaren in and then he will read the letters and write back to them in the same notebook and they will have letters from him that they will cherish forever, they have agreed to share a letter on this blog for all of you to read. RaKelle wrote a letter to him first and so I will share one of her letters and then when Ashlyn and Braxton finish theirs I will post them.

Dear Dad,
I know this is wierd to read but it has to come out and I can't say it, it...it's hard to say adn write but... it's gonna happen, and I am gonna miss you the second it happens. I never wanted you to leave me so soon I expected you to die at 100 or over but never under 100 I hope you don't mind me saying this but.... can you tell me on the letter back why do people have to die in vien, why do people feel hurt when someone dies?

Love,
RaKelle

that is word for word. I hope that this will be something that will help all of us cope with this disease and what is to follow when he gets worse and I want the children to know that anything they want to say to Jaren or to me will always be worth it, and that we will listen to what they have to say and help them know that they are loved and that we will make it through this together no matter what happens.

May 18, 2010

I am still trying to figure out a way to get some assistance. It looks like the only way that we will be able to get assistance is by moving Jaren into a rest home for 90 days and while he would be in there I would need to get a business license and my CNA in order to get any assistance. So the question would be do we do that? To me it doesn't seem logical for a couple of reasons 1-It would be hard on the kids to move him out for 90 days and then back in after 90 days, 2-what would I do for income during those 90 days his disability payments would probably have to go for paying the home, medicaid is not going to cover it they won't even cover a day care program for him to go to so that I can work because he isn't disabled enough for that program. 3-We would have to have his doctor state that it is a necessity to move him into a home, she won't even put him on Alzheimer's meds she is not going to put him in a home. 3-the kids are already having a hard time knowing that their father will not be with them for long and then they want me to move him out and then back in, yeah we would still be able to see him daily but that is so hard more time for him away means more memory problems and he may not remember who they are. So as of now this option is not something I am going to put time and effort into yet. If I am supposed to be home for something then it will all work out, I don't know when but something will happen, I don't know when but something will be definantly worth all this trouble that we have had.

May 11, 2010

This week I thought was going to be much better it started off with Mother's day, that was a nice day. My dad took Jaren shopping for a present because he can't drive. I had wonderful programs I was able to go to at the school for my kids it was a great start to the week.

I finally got up enough courage to call some more places for some resources and guess what happened I fell right back on my face again, seriously how disabled do you have to be to get resources in Utah. Well I am was so upset I couldn't even get help from the Alzeheimers Association because he isn't old enough to have symptoms of Alzeheimers but MLD is much like Alzeheimers so again I am at a stand still. I didn't give up hope yet though I was so discouraged with this state that I emailed the governor I am fed up with this state not helping people that are working their butts off to provide for their families I am going to email and email and email him until I can get somewhere I am fed up.

Jaren's memory is getting worse he didn't remember how to tie a tie the other day. How can I go and find a job when he can't even qualify for a day program for the disabled, what do I do? He follows me everywhere I go, if I am at the computer he looks over my shoulder the whole time until I find him something to do. I don't want to put him in a nursing home. I called Social Security last week to find out if they could help with something and of course I could get mother's benefits but it would come out of the kids' benefits and why would I want to do that? I wouldn't be able to work either. I have contacted so many people in the last 3 months and have gotten no where. I am trying my hardest to keep the family going as normal as possible but inside I am sooooooo FRUSTRATED that I cry all the time. I can't handle the pressure of caretaking and trying to find a job when I can't even leave the house. I have contacted division for people with disabilities and nothing they can do either.

That is the week we have had so far and it is only Tuesday, we still have 5 more days I will just keep going and hope something opens up for me.

April 23, 2010

Today has been especially trying for my patience Jaren and Ashlyn have been fighting non-stop I am getting so frustrated. Why does she pick on him until he snaps and then she starts crying because she says he hurts her, he is going to really snap and really hurt her or someone else. I guess it has been a very hard day he stood in front of the front door today to lock it and couldn't figure out what he was supposed to be doing, so I had to help him figure out which key to use to lock the door.
It is so frustrating to me when people tell me that they know what I am going through when they really have no clue. Just be supportive it's ok if you don't know what I am feeling but don't pretend, and think that everything will be fine, it will be fine, but for the time being it isn't and who knows when it will be. Sometimes I just need a listening ear and a good talk or cry with someone and then I have the strength again to move on.

April 21, 2010

Today has been especially hard, we had an appointment with the psychiatrist today and since Jaren stopped his meds for depression and anxiety and refuses to take them they decided to keep him off of them they would like him to stay on one medication to control his anger issues and maybe stop fighting so much with the kids. We will see!! I think he is a point in the progression that he doesn't realize what is happening to his body and his mind and he can finally not worry about what is happening.
The psychiatrist has suggested to start him on medicine that helps Alzheimer's patients so I called the neurologist to find out if that could be an option, the answer was not what I wanted to hear, she claims that it will not help Jaren so that we should not try it, that was discouraging to me I was hoping for something to help with the memory and being able to leave him home sometimes, he has been following me everywhere I have to lock the bathroom door really fast behind me to get 5 minutes of peace and quiet, but I know he is right outside the door waiting for me.
I thought today would be a good day especially after the psychiatrist appointment. You would think that the neurologist would be willing to at least give it a try and if it doesn't work then we can go a different route.
I have been particularly discouraged this week anyway trying to find a place that will allow me to work for them and take care of him he can not be left alone at home by himself and the kids need to be kids so I try my hardest not to leave them alone with him. You can only be told NO so many times in one day before you can't handle it anymore and give up until the next day. So I guess today is one of those days where you can only do so much and then just say "oh well I have had enough today, I am sure tomorrow will be better it has to be!!"

Letters to the Kids

I have been thinking a lot about things I can do to prepare myself and the children for the dreaded day when Heavenly Father will call Jaren back home and we will no longer be together here on the earth, so talking to the counselor I have been taking the girls to suggested writing letters to each other so I decided to write some letters to the kids and later to Jaren.

Dear RaKelle, Ashlyn, and Braxton,
I am writing this letter to you to let you know how much I love you and that your father loves you too. We are so happy that you decided to come and join our family. We have been through a lot together these last couple years I know it has been hard for you guys to watch your dad go through what he is going through. I would like you to know how amazing you all are for dealing with this disease with such a good attitude and I want you to know that we are in this together and you will never ever be alone I will always be here to answer any questions you have, and your Heavenly Father will never ever leave you alone you just need to ask for his comfort and help. I know we will be together forever as a family.
I want you to also know that I am so proud of everything you guys have done and what you will do. Always know that I will always love you and no matter what happens Dad will always be your DAD nobody will ever take the place of you father and that I will try my very hardest to be the best mom that you will have, I know some days will be difficult just try to understand that I am trying to cope with everything right along with you guys and we will get through tough times together. Dad will always love you and he knows that you guys were sent to our family for a reason and that he tries to do everything he can to protect you and to make sure you are taking care of.
I want you to know that dad will probably not always remember who you are but in his heart he will know exactly who you are and he will love you forever and he never wants to let you down. RaKelle, Ashlyn, and Braxton you are the best kids anyone could ever ask for and you are so special to us and if we had to do it all over again we would do things the exact same way. Sometimes people have trials that are harder than others but know that trials are given to us to help us learn, everything happens for a reason and we know that you were sent to us because of your strong personalities and your way of dealing with tough things that are put in front of you. You guys are amazing with all of the responsibility that you have been placed with. I am so thankful that you are part of our eternal family and that we will be together forever. I will always be here to answer questions or a listening ear even in the middle of the night. You will get older and things will probably get harder but I know if we stick together as a family we will get through it.
Love Always,
Mom

So what exactly is MLD?

The MLD Foundation website explains it the easiest, MLD stands for Metachromatic Leukodystrophy, which in human terms means meta-change, chromatic-color, leuko-white matter, dystrophy-degeneration, so in other word degeneration of the white matterof the brain and central nervous system. His body lacks an enzyme called arylsulfatase A so the sulfatides in his body eat the white matter on his brain (Myelin Sheath). He will one day be totally incapable of walking and talking and eating and everyday functions that we are able to do. There is no time frame on when things will happen or which order they will happen in. Everyone with this disease are all different with symptoms and how they react to certain types of meds to help with the symptoms, it is like the snowflakes there is not any two that look alike at all. There are 3 types of MLD infantile, juvenile, and adult. We feel blessed to have the adult version as the disease progresses at a slower rate, also it would be difficult to have a child with this, I know many parents that have children with this and they do an amazing job with their children with MLD and also their children that do not have MLD. I look up to these amazing people that have children with it what a difficult job they have and they do it amazingly well.

Jaren sometimes has really good days on the good days he remembers things that he needs to remember, he also has medocre days where he will remember things and also does things that are questionable I just figure it has been a long day and just move on. Some days are horrible on these days he is terribly ornery because he doesn't remember things and sometimes he starts fights with the kids and sometimes he doesn't even remember who I am, very hard to deal with when he is like that. Somedays I feel like I have a teenager that wants to argue with me for anything and everything which can be very frustrating I try my hardest to keep my patience but sometimes I do have to send him to a time out so that he can take a breather and relax. I used to not be a very patient person but I have learned to try to be as patient as I can some days are easier than others, but I guess that is life!!

This is a family photo that was taken in 2008, We get family pictures done every year because who knows when we will be called home. We cherish every moment together even the fights! Living day to day with MLD has been both challenging and rewarding, I can't say that I am thankful for the disease but I am so thankful for the many things I have learned from it. I have learned a great deal from MLD it has put my life into perspective that nobody will ever understand until they are in my shoes. We live life everyday to the fullest, we love spending time together as a family. Don't get me wrong daily 24 hour care for him is not the easiest but I wouldn't have it any other way. I married him for eternity in sickness and in health. Our kids have days when they are so emotional I don't know what to do or say but hug them and tell them that they are loved no matter what.

In 2009 Jaren had been working for Reams Grocery Store in West Jordan Utah and what an amazing place to work the people were great with him and even though he had his days when I am sure they wanted to scream they were very patient and explained things to him and let him try again. James is the manager there and he has been an amazing support through this. He was so willing to work with Jaren and help him work as long as he could. Well the dreaded day came when Jaren would no longer be able to work. He was so caring when that day came we knew it was going to come but we didn't know when. He has been a great friend to us that means so much to our family that he will never know. It is hard to put into words the strength that he gives to me. We are so very thankful for the support from James and all of the Reams employees, Jaren loves to go into Reams and see everybody.

Diagnoses Day

October 13, 2006 was the most devestating day into our journey with our family. Dr. Richards our wonderful family doctor called about 4:00 P.M. to let us know the results of the dreaded test for Metachromatic Leukodystrophy it was for sure positive, wow what a roadblock I don't think it was reality for awhile, I remember hearing the words like it was yesterday.

So now what? well we just live life and find options that will help us through this journey. The first meeting we had was with our LDS Bishop, Bishop Pearson to let him know that this long journey awaited us and that we would need some support he was very kind and asked us for some information that he could learn more about MLD. I had some paperwork because we ourselves did not know a lot about it. He was so good to us and was so willing to help us get through this with support. I searched the internet for answers and studies and I got in touch with my brother-in-law who had been going down this journey for several years he was very kind and helped me in any way that he could he answered my many questions even if they were dumb. He has been a big support to us also, and we are very greatful for his support. I found a support group through the internet with people who have loved ones with the same disease and that has been such a blessing in our lives I can email the group and vent or ask questions and we are all learning together and some people react differently with MLD than others so there are so many suggestions that help us all get through the tough days. We also look forward to the good days that people enjoy with their loved ones.

February 10, 2007 was a hard day for all of us. We found out that Jaren's sister Ansje that had been suffering for a long time had passed away even though we all knew she was free from the disease and was perfect again did not make it any easier. Our diagnoses was still fresh on our minds and we knew what was coming in our future. It was very hard to cope with. She was a mother of 4 wonderful kids and a wife. I knew then that we had to do something about this to help Jaren. We finally decided to meet with the Bone Marrow Team at LDS hospital to discuss a transplant that might slow the progression, what an eye opener, they were very kind and laid everything out on the table it was very overwhelming a 4 hour appointment that stated many times that the chemo he would have to undergo would probably kill him faster then the disease itself. We came home not knowing what to do or where to even start. We immediately counseled with our bishop and the stake presidency. We decided against transplant we were not ready to give up though. We decided it was best for our family to enjoy the life that was given to us and we have not regretted our decision.

Jaren and I were married April 16, 1998, life was perfect nothing was standing in our way we were so happy together. We found out October of 1998 that we were expecting our first child. How exciting we were expanding our eternal family.

June 25, 1999 RaKelle Jamie Gordon joined our family as the oldest child. She was perfect our lives were changed forever in a good way. RaKelle had her dad wrapped from the day she was born.

March 27, 2001 Ashlyn Rose Gordon joined our family she was stubborn and didn't want to come to this world without a fight, she was my emergency c-section, but she was a great addition to our family and we love her.

April 8, 2004 Braxton Jaren Gordon was our first son he was so chubby and never stopped growing. He is a great addition to our family also.