Little Benjamin

To all our friends and family who have asked about little Benjamin, this is a beautiful letter written by Kristen's Father.  We have been reminded once again how precious life is and are grateful for the knowledge of the Plan of Salvation. Our prayers continue to be with Kristen and Randy and we will be forever grateful to them for allowing us the opportunity to meet him and hold him, knowing his time on this earth was so limited. It was an extremely selfless act for them to share him with the family and it truly was an honor to be in this little angel's presence.
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Benjamin Ryan was born on February 15^th at the Orem Community Hospital.  When he was born he didn’t cry but the doctors felt he was just exhausted from a very trying birth.  They thought that he would be stronger within the next 24 hours.  After 24 hours they didn’t see the recovery they were hoping for so they transferred him, for precautionary purposes up to Primary Children’s Hospital.  Within hours they had several teams working on him trying to determine the problem.  The neurologist eventually diagnosed him with Non-Ketotic Hyperglycinemia Encephalopathy.  Though the neurologist team diagnosed it the genetics team then took over, as this is a genetic disorder.  This is a very rare disorder that only happens in about 1 in 63,000 births.  It was a disorder that began at conception.  Only 2 in 250 people have a particular recessive gene along with a dominant gene (most of us have 2 dominant genes).  Then those 2 people need  to find each other and conceive a child.  And then there is a 1 in 4 chance that the 2 recessive genes hook up…and when that happens you have a child with Non-Ketotic Hyperglycinemia Encephalopathy, which is a terminal disorder.

Children with this disorder generally don’t live longer than 6 months but because Benjamin’s was so severe he wasn’t expected to live beyond Monday evening.  When he was still with us Tuesday morning the hospital felt there was nothing more that they could do so they told Randy and Kristen that they could take him home to spend some quiet time with him, but didn’t expect they would have much longer with him.  Benjamin was a fighter and wasn’t quite ready to go.  He surpassed everyone’s expectations…but he did pass away very peaceably early Friday morning February 25^th, at 12:20am in the arms of his parents in the quiet of their home.  A close friend of the  family from California who is now a mortician here in Salt Lake came to their home within an hour or so and picked up Ben and is personally caring for him until his burial. 

Randy and Kristen thank you all for your prayers and kind thoughts and for those who joined in our family fast.  The parents know that the prayers were heard.  They have also felt that Benjamin Ryan is indeed a choice spirit and know that they will one day have an opportunity to raise their special little boy.

                               

 Rick Andrus

Still here!

And I'm no longer in need of a hair cut. But enough hair talk, just know I am a happy woman, good for another 4 weeks or so before I decide to return to my old salon (couldn't do it just yet) or go back to the new one I discovered. It really doesn't matter, all that's trivial.

Life keeps happening and I am a swirl of emotions. For heaven's sakes, I want to post pictures of Halloween last year, Cade's soccer swimming party we had in September, pictures of Savvy's 4th birthday, videos of my chubby love Ruby belly laughing, write an account of our warm and sunny Family Vacation we just took, and write about everything in between. But for now, my heart is somewhere else....It's in a few places right now, actually.

My heart is grateful. While I am far from pleased in the direction our country has been going with political decisions, I'm grateful for my freedoms to participate in deciding who runs this country, my state, my city, my school district. Watching Egyptians having to fight so hard for something we've had for so long reminds me to a powerful degree that I am proud to be an American and I'll not ever take it for granted.

My heart is sad. I'm sad for my Father-in-law who endure his first post-funeral birthday of Mary, his first Valentine's Day....and he's working so hard running the pizza store, and working his full-time job while coming home to an empty house. That is sad to me. I think a lot about the emptiness he must feel, the shock of how different life is now, and I want to take that all away. Life is full of hard experiences, and the most painful ones are refining ones, but it is really hard to watch from so far. We miss Don a lot.

My heart is at peace. Since we moved to Utah, education has been...well, tricky for lack of a better word. I now live in a place and time where I have many options for my children. I could home school, I could send Cade to a private school, I could apply to get him into a charter school, or I could send him to another public school in my district for a specialty program, or I could send him to the public school assigned by where we live-- which is what I am doing now. While there is likely no wrong choice, making the best choice for Cade is what I want, and I often second guess myself and my parenting. It's hard. The choices I make can impact him for life. I'm so responsible. It seems to be that around this time of year I start wondering if I should make a change or keep doing what I am doing. Nothing spurs it other than if I need to prepare to make a change for the following year, now is the time to do that. Cade is happy. I love his teacher. I am involved in his classroom and other school activities, I am pleased with his progress. But I still question--- is this right? Is this the Best? Today I went to his school twice. Once to help out with a program that the school teaches the children to keep them safe, and then again for his parent teacher conference. While there both times, I just felt peace. He's in a good place-- and not only that, he's in the best place for him where he is thriving and having experiences make him a better person, growing him to be a compassionate, caring, and educated little man. Having that kind of peace is wonderful. Truly wonderful.

My heart most completely tonight amidst all these other feelings is prayerful. Scared, too, but mostly hopeful and trying to exercise as much Faith as I can muster on the prayers of my newest nephew's behalf. Randy and Kristen delivered their son yesterday and he was sent up to Primary Children's Hospital this morning. His reflexes and responses have not been what doctors want to be seeing from a newborn and want to run some tests. As a mother, it is always heart-wrenching to hear that about anyone's new child. When it is family, it brings a new slew of emotions that are hard to escape. I want him to be healthy, free from any complications. When someone has a child, I want it to be a sweet, perfect experience, free of worry or fear or sadness. Life can't perfect, I know.... so I suppose for me it's the fear of the unknown right now. Pray for little Benjamin to get well. To be well. We will be.