What a wonderful life!!

Talan Christmas morning with the blanket his mom made him

Christmas Pj's 2014

Having one on one with the Sgt. target shooting SWAT

Having one on one with the Sgt. target shooting SWAT

In the Helicopter SWAT

In the Helicopter SWAT

Hanging with the SWAT TEAM

In the Helicopter SWAT

I found this of Talan when he was a soph in High School. This tells it all of  how he was!!!! Awesome player....

This is a video I had made of Talan of what he once was and who he is now and what he would like to be in life. Its of his life before he got sick and when he got to train with the SWAT TEAM. Enjoy!


Where do I begin? This is "Talans" mom. For those friends of his following this, he would love to see you or have you text him. He is losing touch with all his friends and he could use friends!!!! For those of you that have, know that he appreciates you and so do we.
 Due to my own health issues the past few months I haven't been able to update his blog. Its been a busy few months. As we all know how the holidays catch up to us. We had a wonderful Christmas, I couldn't have asked for any better.  Talan has of course had his ups and downs. His life seems like a roller coaster ride. One minute he can be doing pretty good and the next taking a dive!
I mentioned in the last update that he got to go and train with the SWAT team. Here are some more pictures that I have, I could not post them until they had been edited. It was defiantly a fun and great experience for not only Talan but us to. I also had a video done of what Talan was like and what he is today, and it goes into what he would want to be today. Take a look, its pretty awesome. I also found a picture of him the other day of his glory days playing football for our High School team. He was an awesome football player, and could catch anything thrown to him! We miss those days of him being able to do the things he loved to do. The possibilities were endless! But as we look at the big picture he is doing what the Lord has a plan for him to do. Talan is a fighter and always has been. He is teaching us all how to endure to the end, have compassion towards others and sympathize and empathy. He is truly Christ like and a very genuine young man. For those of you that know him, know that he would give you the shirt off his back and do anything for you. He's my champ and hero.
Over the past few months we have been contacted by some other patients that have this same disease, and a family that recently lost their husband and father from this horrible disease. The sad thing is, is that he did not know he had it. It was after the autopsy that they found it. When they got the results the Dr. that did the autopsy told the family that he had never heard of the disease before now, and did not know what it was. They started searching and found my blog. I will be forever grateful that we had the opportunity to meet them in November. This is the family

I cannot express enough how thankful I am to have been able to meet such wonderful people and better yet, someone that understands the disease and what hell Talan and we go through on a daily basis. The other family I have been in contact with is from Australia. I have made a new friend from down under also.  Her son has the disease, and its been nice to have the connection with her and share our daily struggles. Our boys have so much in common. Her son is the only one to have had it on record in Australia. Im telling you, this disease is very rare!!!! Her sons Dr.s sent people out of the country to the U.S, Japan, and Europe to find out about this disease to see what treatment was available to him and what it is. As we thought, they found out the same thing we have, not much treatment and have no idea how they get it. There are so far only about 10 people known in the world to have this. There could be many more but they just dont know that they have it. Someday I hope there is more research on this. I was also contacted by another lady from Michigan, she was just diagnosed in November. It has been wonderful to know we are not alone and can share with each other our heartaches and struggles and triumphs!! This is just a tender mercy in my book that we have had contact with these people. My blog for Talan is serving its purpose. Each one of them are at different stages of the disease and this is why its so hard to diagnose.
As I said, Talan has had his ups and downs, some are scary, some are fun great memories, some are just sad and heart wrenching. This is one of them that was scary and heart wrenching

He told me hurry mom get my oxygen I cant breathe, as a mom you never want to hear those words from your child that is still too young to have to rely on oxygen sometimes. I hurried and put it on him. It literally can just hit him so fast, episodes of anything can happen. This is why Im at home with him all of the time. Of course there are times I feel like I can leave him and go to the store or wherever I need to be for an hour. He hates that he has to rely on us for help.
The biggest issue Talan has, is watching others move forward in life and he is not. His poor body just cant take much it tires out too fast. The past few months he has been trying to lose weight and become more active. This is a very hard thing to do for him. He has done well with weight. He has lost about 20 lbs and exercising when he can. But in the process he has had his lows to. When the weather changes he is down for the count. The pain intensifies and he cant get out of bed. It seems as if we are on a long roller coaster ride and there are more downs than ups. But we will take the ups as much as we can.
I want to share with you a page in a book that we have been reading for those of you that also struggle in life this will pertain to you to. The book is called "To my Friends"  Written by Jeffery R. Holland. He talks about blessings coming through adversity.
"What we instantly learn is that God was not only teaching Joseph Smith in that prison circumstance but he was teaching all of us, for generations yet to come. What a scriptural gift! And what a high price was paid for it! But how empty would our lives as Latter-day Saints be if we did not have sections 121, 122, and 123 of the Doctrine and Covenants. They are contained in total on a mere seven pages of text, but those seven pages will touch your heart with their beauty and their  power. And they will remind you that God often "moves in mysterious way His wonders to perform." In any case, He certainly turned adversity into blessing in giving us those sacred writings and reflections, so pure, noble, and Christian in both tone and content, yet produced in such an impure, ignoble, and unchristian setting.
The first lesson of Liberty Jail is inherent in what I've already said-that everyone, including (and perhaps especially) the righteous, will be called upon to face trying times. When that happens we can somtimes fear God has abandoned us, and we might be left, at least for a time, to wonder when our troubles will ever end. As individuals, as families, as communities , and as nations, probably everyone has had or will have occasion to feel as Joseph Smith felt when he asked why such sorrow had to come and how long its darkness and damage would remain. We identify with him when he cries from the depth and discouragement of his confinement: "O God, where art thou?... How long shall thy hand be stayed...? Yea, O Lord, how long shall [Thy people] suffer... before...thy bowels be moved with compassion toward them? That is a painful, personal cry-a cry from the heart, a spiritual lonliness we may all have occasion to feel at some time in our lives. 
Whenever these moments of our extremity come, we must not succumb to the fear that God has abandoned us or that He does not hear our prayers. HE does her us. HE does see us. HE does love us. When we are in dire circumstances and want to cry "Where art thou?" it is imperative that we remember He is right there with us-where He has always been! We must continue to pray and plead with heaven, even if we feel for a time that our prayers are not heard and that God has somehow gone away. He is there. Our prayers are heard. And when we weep, He and the angels of heaven weep with us.
When lonely, cold, hard times come, we have to endure, we have to continue, we have to persist. That was the Savior's message in the parable of the importuning widow.  Keep knocking on the door. Keep pleading. In the meantime, know that God hears your cries and knows your distress. HE is your Father, and you are His child.

May you all find peace and comfort in this. I know as I read it, it pertained to me. But what is Talan doing? He is such an example of enduring to the end, and pushing forward and fighting for his life. I hope you all know that we feel of your love and we thank you for all your thoughts and prayers in our behalf. Talan could and always can use your prayers. Much love to you all. Love you all, Jen (Talans mom)

SUMMER FUN

SWAT TRAINING

Jeep ride at Island Park

Jeep ride at Island Park

Well its been awhile since I have updated.So much has been going on in our family the past few months that Im finally getting around to updating Talans blog. He has had a few good months, lets just say he still has his horrible days, but for the most part he has been doing ok.
We were introduced to a new Dr at the U of U in June. She gave us some tips on what we could do to help Talan, but unfortunately she told us NO MORE INFUSIONS!!! One they seemed not to be helping him and second she said she didnt want to suppress his immune system anymore than it was already. She ordered a CT scan to be done on his lungs and a echocardiogram. The CT scan came back with a few changes. The test has you inhale and exhale as it takes pictures of your lungs. We now know that when he is exhaling he is getting air trapped, he cannot expel all of his air. He needs to see a pulmonologist for that, but he refuses. He is sick of Dr appts and says, and what are they going to do about it? Nothing! So maybe in time he will go. The echo came back ok. That was good news. Over the summer we were able to go on a little vacation to Island Park at a friends cabin. Thats all Talan wanted to do was go and just enjoy a new scenery. I cant blame him. We took his best friend Carson with us, because this was going to be the last time to do something together for a while. Carson was moving to Maryland in August to work on the Naval base. Some of these pictures above is our little trip.
Another fun thing that happened, was we did kind of a make a wish for him. For some reason a miracle happened, I love those tender mercy moments!! Long story short, we met a guy that was fitting Talan to his new back brace. He had connections to the Special OPs SWAT team in Salt Lake City Utah. I totally believe that God had his hand in all of this. This is what Talan would love to do if he could. We were able to take him down and train with the Special Ops SWAT team. I cannot thank those gentlemen enough that made this happen. You know who you are! It was so fun to watch him be in his realm, and the SGT that was in charge was just amazing with him!!!! He took Talan by himself and helped him shoot at targets and just spent one on one with him. The smile on his face was priceless, and those few hours were the world to him. We were even able to go in the helicopter they had there. They were actually doing training in that, shooting at targets. The SWAT TEAM was awesome and made him feel like he was one of them. They were so genuine, and so heartfelt towards him. As Talan spoke with some of them, they just told him that his lot in life was a different one and he was their hero for fighting the battle he was fighting. It sure made this mom a happy mom, ok and dad was the same. After having two flat tires that day, and the swat team changing one of them for us, and me blowing my knee out getting into the helicopter. It was still an awesome day that we will never forget! Thanks to the one that brought over the ice pack, and wrap for my knee! I dont think I have ever been that embarrassed before!!! Totally a blonde moment on Talans day. I will be posting more pictures than I have here, along with a video for you to see when they are done.
Talan and I also re-did his room together just recently, and now is paying for it. I see the trend coming on of him starting one of his mean cycles. He has bronchitis right now, nearly pneumonia. As the weather changes it starts to effect him. I hate watching, and not being able to do anything about it. I have watched on the social media of the ice water bucket challenge, it has brought me joy to see people at least acknowledging there are rare diseases out there and life for these people affected it is horrible for them. I wish there was a way to raise awareness for Talans disease. But in due time Im sure there will be. Thank you to all of you for your continuing thoughts and prayers for him and our family. We appreciate all that happens in our behalf, and are truly blessed to have all of you in our lives.
I have started a FB page for Talan. It is called Talans Fight, it should be attached to his blog that you can go and like it. I will try and update that weekly there, although it will not be as in depth as here.
Love you all!!!!

All it takes is LOVE, FAITH, AND COURAGE!!!! HAPPY BIRTHDAY TAL!

Livin on Faith

                                                          Tim Gates, from "Due West"  singing to us:)

Traveling to Yellowstone

This was last night when he told me he didnt feel good.

Yellowstone

Yellowstone

Yellowstone Talan and Stan (Dad) trying to give me a heart.... lol

Yellowstone accomplishing the finished heart!

23 Birthday

Playing a little bball with dad

Playing a little ball with dad

Yellowstone

Yellowstone

Yellowstone

23 Birthday

23 Birthday

23 Birthday

23 Birthday

Olive Garden dinner date with Mom and Dad

Also last night when he didnt feel well

Traveling home from Yellowstone asleep

Talans 23 Birthday

23 Bday

Called to Serve Brigham City Temple bracelet for his Bday

Well I guess its been a few days since I have updated. This momma has been sad and heart broke and cried just a few times this past few days. Its so hard to see Talan battle his battle! Lets just say that days are getting worse and he starts and ends what we call cycles off and on. They seem to come more and more frequent lately and it sure takes a toll on his body, and mine.  There is one thing for sure as I give him his daily shots of medication, I just want to cry.  Once was his hip area, once was his buttock, and now on to the thigh of tissue turning hard, as I inject it feels like Im injecting into grissel. Sometimes as I inject the tissue is so hard I have to pull out and go to another spot because it wouldnt push through. At times I can get it to pop inside and then he screams and says he feels it going in directions through his tissue it shouldnt be going to. This is because the route of medication is trying to find alive tissue to absorb into. This just about makes me cry and nauseous everytime I have to do it. He is totally a trooper and some how gets through it. Bless his little heart!  As we both fight for sleep and to keep ourselves going. He sure tries to get up and function, but his poor body says NO!  He has about an hour a day of energy and if he does to much he finds himself in bed till the next day. Just last night I cried at his bedside as he could hardly tell me in the most cringing voice, mom, I dont feel good, I just dont feel good. I feel Im getting sick, could you please sit in here with me and watch me and make sure Im ok. THIS is what Im talking about, he is starting a cycle.  I just wanted to fall to my knees and plead for comfort for him, and the pain and sickness to just go away.  Dear Lord, why must I watch my precious little boy slowly slip away???? I dont like it!!! 
All he wants is to be normal and function, have a life, a girlfriend, wife, kids, college, work, and so forth..... as he tells me this I just want to cry. Ok, I do cry. I tell him that Heavenly Father must have another path for him, and how else do you look at it? He told me just the other day that he hoped to die in his sleep and wake up out of pain and in a beautiful place, and be able to pick the most beautiful girl to marry on the other side waiting for him. I dont know, maybe she is waiting for him? That about broke my heart in two, but how can you not think about how wonderful that would be for him to be out of his pain. Then I want to slap myself for thinking such things, Im selfish and want him to out live me at my old age of being a grandma to  his children!
  He just had a Birthday on April 12, and he turned 23!  Im so thankful and feel so blessed to still have him here. He looks at his friends, sister, and others moving on and it really sometimes takes a toll on him. He just learned of his best friend graduating from college and moving to Maryland within the next month, he has stood by his side, comes to see him, and takes Talan places to get him out of the house. Talan slipped into a little depression for a few and days and cried and cried. For he seen that life moves on unfortunately for others and his does not. We try to keep him positive and ourselves to, for this trial is strengthening, teaching us unconditional love, faith, perseverance, and humility. I know that my Heavenly Father is blessing me with the health and strength to keep going every day as Stan also.
 Talan wanted to go to Yellowstone for his birthday to our time share.  So we packed him up about two weeks ago and went on a venture with him for a few days. Of course we tried to tell him there was nothing to do up there but he still insisted we go. I told Stan that we needed to go and spend some quality time with him, as Stan is so busy with everything he does to keep us afloat. We got up there and never left the condo. Talan was to wore out to even go for a ride. He mostly slept the whole time we were up there. He went from the chair in the living room to the bed in the bedroom. The picture above shows just how wore out he was. It makes us sad to see him so wore out. Im afraid its just going to keep getting worse. His reasoning skills are getting harder and harder to deal with. He doesn't realize it either, that's the hard thing.
We have had hurdles to jump the past month and a half, Talans pain Dr. passed away from cancer and he was the BEST! He helped us stay on top of his pain and everything else he could, a very intelligent man and now he is gone and we have been lost trying to find a new doctor.  Finally we have found someone to help for the time being. On the good side of things we have also found a Dr at the U of U to watch over him as his disease progresses. We have yet to find a doctor that would or could do this for him. We were excited to know someone delt with sclerosing and would take him on.  What a blessing that will be.  We have not been yet for the first appt., unfortunately he cant get in until June 19. He is on a cancelation list. I can only hope it will be sooner. She will follow his lung function, intestinal function, and pretty much everything from what we understand. His intestinal tract is sclerosing and he doesnt eat much that has to be digested much by the muscle function inside the intestinal tract. He mostly is eating right now, Chex mix is his favorite, if you think about it, it is pretty much mush before it enters the tract. Easier on him, softer foods is where he is at, at this point. Oh and of course his pepsi! ha ha
About a month ago Tim Gates from Due West was passing through town and came out to our house and sang to us. What a great guy, how genuine he is and how grateful we were to hear him sing and bring us peace. He will never know just how much it meant to us to take time out of his busy day to come out to our home and sing and shoot the breeze with Talan. We appreciate him, Due West and Nashville Tribute band for the compassion they have for Talan and others in need. They have literally touched our souls! IF, you have never heard of them please go to YOUTUBE and look them up! So Im sharing with you one of the songs that Tim shared with us, please enjoy.
One thing that is on Talans list to do this summer is redo his room. His room is done in hunting and has been that way since he was in High School. So he is trying to plan what he would like to do. This is giving him something to look forward to, and I guess I will have my summer cut out for me. He wants to do his room like "Hawaii five0 the new series", like their work room, with diamond plate stuff on dressers and have places to put stuff he likes. His room is pretty small and his bathroom really small. Im trying to figure out how to make it more user friendly. He has to step up and down a stair and sometimes falls off coming down the stair, and he hurts himself.  As he scleroses it worries me how we will eventually get him showered, and getting him up and down that stair and to make his room more user friendly. Funds are just not there to do a lot. SO if any of you have any great ideas, let me know! This kid at least still has creative skills, ideas and his sense of humor. I sure do love him!!!
Thank you all for your thoughts, prayers, love and support as we go through this enduring trial. We love you all!!! His courage to keep fighting helps me to keep going! Jen