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.