Not a bad way to start out your day... a hug from Elder Holland, him asking us how Paxton is doing, and saying, "Well let's go hear more about him!" So cute. He is always so kind to us.
Today demonstrates yet another layer of Paxton's mission being here. That he could come to a family who had a link to someone who could learn and express these thoughts with many people all over the world in similar situations as us. I feel so grateful. He teaches us all so much. My mom joked after the session, "We need to make him a little missionary nametag of his own!" So true! We were grateful to have some of Paxton's caregivers there with us who I hope felt the Spirit of the whole conference. How could anyone not? The leader's of God's church are amazing. I am so inspired and happy, motivated and content. I can't wait to study all of these talks further.
And even I will watch my dad's talk over and over as something different stands out each time!
Thanks to you all for the well wishes and fun comments today. It feels so good to share your story. What is yours???
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13 comments:
Found your blog after hearing Elder Rasband's talk so I really hope this isn't weirding you out. Our daughter also has a genetic condition, well at least that's what the specialists think it is. We were just asked to be a test case at Texas Children's Hospital where all our daughter's 25,000ish genes will be sequenced. We have to wait 3-4 months since the process is so new but we are so excited to finally have something! Anyway, although our children are different, our situations are similar and I couldn't help but pray for your son as I heard his story. It was such an uplifting experience to hear encouragement for "caregivers" of children like ours. I can't help but think of parents with special needs children as reluctant members of a club no one really wants to join. But now that I am here, I have found an amazingly supportive community. I have a hard time not reaching out to other mothers like me! I know a little about the great challenges and the great blessings that special needs children bring. I will continue to pray for Paxton and especially for his mom!
I just wanted to let you know that your story got us through our son's diagnosis and stay at the NICU about a year and a half ago! Our son Braxton has 7q 36.1 terminus deletion and is so special to our family! Thanks for your wonderful example of strength, courage, and most of all FAITH! You are such an amazing mother and yes you have a little angel with you at all times! Paxton is such a cutie and I just want to let you know that Paxton and your family are in our thoughts and prayers! He has been through so much and despite all of it...he smiles!! I just love it! :) You have touched so many lives with your blog and now even more with your Father's talk!! There are so many people out there who needed Paxton's story today!
Tell your dad thank you. His talk touched my heart in ways I can not express right now. I'm so thankful he spoke of the realities we face, coupled with the blessings. He balanced things perfectly. I am grateful for Paxton and my Deakon and their capability to touch others beyond our measure.
Found your blog 3 months ago when my son Maximus was born and placed in the NICU in Provo. I was inspired and felt blessed and found hope reading your story. The drs did not and still do not know much about our sons diagnosis. He also has a rare genetic disorder called Goltz Syndrome. He is one of six boys in the world with it. He is our first and our miriacle since shortly after he was born we were told males don't survive the womb. Your fathers talk today brought tears to my eyes and brought me more hope and joy. I wish for you to tell him thanks for giving me that and I too will watch it over and over. I also shared his message with my friends on Facebook and let them know how grateful I am for his knowledge and encouragement. I'm glad to know there are other parents in this world going through some of the same feelings and blessings as I and my husband. Thank you!
I loved your dad's talk. Then I got to thinking about Paxton's age and diagnosis, and finally managed to put two and two together. My little guy is Aaron, and we met one day after trach/vent clinic up at PCMC. We live in Alpine. I got to wondering if Paxton yesterday was the Paxton I got to meet. So loved hearing the talk, and boy, those picture were sure familiar. In fact, my husband looked up just as one was on the screen and for a minute thought it was Aaron. Hugs and prayers, and we'll have to find a way to get together with the weather improving. Love, Rebekah
Shannon!
Ahhhh! Tears just welled up in my eyes when I saw your comment on my blog. I couldn't believe it. There were so many talks that spoke to me at conference, but your dad's couldn't have felt more direct and personal than if he had given it in my living room. I love that he brought what seems so normal to us, but so rare to the rest of the world into focus--if even just for a few minutes. I've listened to it once again and will listen several more times for sure. I also really loved what he said in such a perfect way that "let me know if I can help" is actually no help at all.
When his talk was over I thought, "I wonder if I could find his daughter and spotlight her and her son?" So what do you think? Would you like to be a part of my special needs spotlight? Email me at thislittlemiggy at gmail dot com and I'll get you scheduled ASAP.
AND would anyone else on here like to participate? Please email me too if you'd like to participate! I'm always looking for families and kids to spotlight...thanks!
Hi Shannon, will you guys be at trach/vent clinic next week? We have an 8 am appt. & I'd love to get together with you if you're going to be around. Rebekah (Aaron's mom)
Just sent the last hour catching up on your blog. Wow! so much has happened and I was thrilled to hear that he is doing great on the HME now. It is so liberating! It is awesome to see the power of Paxton in the comments of those who related to your story through your dad's talk. You guys are awesome. Talk to you soon.
It was so great to hear the update from your dad :). What a sweet message. AND I love seeing your name pop up in my reader. xoxo miss you.
I found you after your Dad’s talk to. It was JUST what I wanted to hear. I have a baby with lots wrong and his specialness is a hard thing some days.
Hi Shannon, I emailed you a couple days ago, but you're also probably pretty busy. There's another child (6 yrs old!) chromosome 7 deletion on the trisomy 18 mommies, along with a couple of moms whose kids have partial trisomy 7. Anyway, get in touch with me and we'll get you put on there. Really hoping we can get together at a park or something once this crazy weather gets figured out... Rebekah
I have been following your blog for a few months. I had a son in 2011 that stopped breathing immediately after birth and they lifeflighted him to IMC NICU. He spent 5 days on a oscillator. That was the hardest experience in my life. I spent 26 days in the hospital with him. He is doing great now. Since then, I have dedicated my time giving back. In December I became a parent support volunteer at IMC. Every week I hear about miracles and sometimes a few tragedies. While listening to your dads talk about paxton, tears were running down my face. The entire NICU mom community was touched. My blog is www.trevorandchrista.blogspot.com I also wanted you to have the lyrics to a song called loneliest walk by David osmond. It goes very well with your amazing dads talk. Thank you to you and Paxton for inspring millions.
"She pushes 'L' on that old elevator door
Her heart is broken, arms are bare
The doors are closing and she's staring at the floor
There's still a piece of her up there
It seems like yesterday she saw him on the screen
Painted a room and picked out names
But now she has to leave him under big machines
To keep alive his tiny frame
She's on the way to her car but it's never felt this far
With each step she takes there's another to follow
And one more ache, one more tear to swallow
She's gotta keep moving,
Forget about the bruising inside
Through the loneliest walk of her life
He pushes up his glasses, staring at her name
One last time before he leaves
He saw this coming but to see it now, engraved
It's still so hard to believe
He pushes up the board they've tied onto his shoulders
He bears, with dignity, disgrace
He hears the jeering and the wind is getting colder
Tastes the blood upon his face
His body bruised an back still open from the scourges
The consequence of wicked men
He knows no man on earth has ever deserved this
But still He bears it all for them
And He keeps moving up the hill to do His Father's will
With each step He takes there's another to follow
And one more ache, one more tear to swallow
We all stand by and watch as the price is paid
Through the loneliest walk of His life
So we don't feel alone in the night
We can have His hand holding the light
Through the loneliest walk of our lives.
Keep pushing through this lonely walk you're going through
'Cause someone's walked this way before
Thanks to my NICU mom friend Christa, I found your blog. It's so nice to meet other mom's who have struggles with children....to be able to help and give strength to each other where needed. I was carrying twins last year....I had to bury my daughter Cindy and her sister Katea was born 16 weeks early at 24weeks. She only weighed 1 lb. 12 oz. at birth. She's had her fair share of struggles, and after spending 134 days in the NICU, she was finally able to come home...only to end up in the hospital again after catching a virus. Her lungs are very weak and critical, and even though it's hard to have her on oxygen 24 hours a day and all the steriods and medications I have to give her to help her lungs....I am so grateful that she is here with me and she's growing and progressing. Your dad's talk in the conference had me in tears the entire time. I honestly felt as if he was talking directly to me....as I'm sure a lot of other's mothers did! Just like Christa said in the comment above, the entire NICU community was touched by his kind, heartfelt, uplifting words! His talk meant so much to me that I've listened to it over and over again, and I even dedicated a blog post about it on my blog. I know he is a man truly called of God and the talk he gave that day helped so many more than he even knows. I have a family blog also, and I kept record of everything I've been through with my little miracle Katea. I know you've heard a million stories, but if you're interested, you can read mine @ http://fangupofamily.blogspot.com It's my family blog, but to go to the story of my Katea, just click on her name tab and it will take you to her story! Thank you and thank your Dad....so much!
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