Moments of Grace

I cant even begin to express the past 3 or 4 weeks. It has been such a roller coaster ride. Today I feel so blessed for all that has transpired the past weeks and days.
This is Talans (mom). My husband and I found out there was a bill being put in front of Legislation here in Utah about 4 weeks ago. We were asked to go and testify if we could. The bill is called HB94. It is a bill that can help those that are deemed Terminally Ill. It would provide them with "The Right to Try" non FDA drugs that could help them. The bill has now passed the Senate floor and on its way to make history in Utah! We cant thank those that were pushing for it and behind it.
Ive also had the opportunity to join the Utah Rare, it a group of crazy mothers trying to raise awareness of Rare Diseases. I have made some great new friends that know exactly what its like to have someone RARE! Our feelings of frustration and hope are all the same. I now have a support group. YAY!!! We are doing great things, and trying to help bring awareness through media and public to bring in a Rare and Undiagnosed diseases program to the University of Utah and Primary Childrens hospitals.
Im so excited to be a part of it. In the progress of being a part of it, the Utah Rare asked us to do an interview with KSL channel 5 and share our story of Talan. We were excited to get his story out there to help those that are having similar situations. But we were also nervous to do it. Talan is not one for attention, and doesnt want to be known for his disease. We have went down memory lane with doing the interview with KSL and also a few newspapers as we were testifying for the HB94 bill. It has brought so many emotions I cant even begin to tell you about them. Talan has struggled with some deep inner emotions as well as us. This is going to hopefully help so many other people and thats the way we are looking at it.
I will post more after the day at the Capitol today for Rare Disease Day awareness and tomorrow for the Symposium at the U of U. So much more  to share with you all. I have been so busy helping with it all that I havent had time to update his blog.
We are in high hopes for genetic testing after this weekend and more help from Doctors. I hope and pray for anyone that is affected like Talan and our family that you may find the help you are searching for. LETS MAKE THIS PROGRAM FOR UNDIAGNOSED DISEASES AT THE U OF U A REALITY!!!!
Much love to you all! Thank you for your continued thoughts and prayers in our behalf.
Jen

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)