Remembering The Tiny But Mighty Thor

Heart month is coming up! February 7-14th is Congenital Heart Defect Awareness week. We wear red to spread awareness ❤️

I have never missed someone as much as I miss you

Until we meet again …

💔 the life you lived was so hard, but you found the joy in every moment. Bringing us a smile on the darkest days. A radiant light. I cry for those moments we shared together, when our family was complete. I’ll always imagine the what if’s as I watch the calendar change, what would be in another reality that you were still here with us on earth. I love you more than words could describe, I love you Thoren always & forever.

😭😭😭😭😭 Many Phases And Faces Of A Mother's Grief

Wishing you a very Merry Christmas ❤️

I'll forever carry you ❤❤❤ Many Phases And Faces Of A Mother's Grief

Today is Children’s Grief day, Big Sisters School got to wear blue for remembrance and recognition for children that are grieving. Today she chose to draw Thor in her thanksgiving booklet as she is thankful for him. Her guardian angel 💙

November is Jacobsen syndrome awareness month! 💙💚

What is Jacobsen syndrome? It’s a rare condition caused by the deleteion of genetic material from chromosome 11. Deletions vary in sizes ranging from small to large.

💚Jacobsen syndrome or JS occurs in about 1 in 100,000.

💙 20% of children with JS will pass away from cardiac related complications before the age of 2 years old.

💚People with JS often have a blood platelet disfunction called Paris-Trousseau syndrome. Causing them to need platelet Transfusion regularly, and are more prone to bleeding.

💙Jaconsen syndrome often causes slow growth, developmental & cognitive delays, birth defects, low muscle tone, heart defects, behavioral challenges, vision complications and sometimes impairment of memory.

💚Some physical appearances are noted as having a larger head, small and low-set ears, widely set eyes with droopy eyelids,a broad nasal bridge, downturned corners of the mouth, a thin upper lip, and a small lower jaw

Our kiddos with JS are rare, and with these challenges they show us the resilience and determination. Each child with Jacobsen syndrome is unique in his or her ways.
When Thor was newly diagnosed with Jacobsen it felt like our whole was crashing down but as we gained knowledge and understood the challenges he would face we began to see life through Thor’s point of view.

💙💚 We hope to share our experiences with Jacobsen syndrome and help other navigate this diagnosis along with spreading awareness for this rare condition. Although Thor is no longer earthside with us we know his legacy continues on! 💙💚

Happy Halloween!! Last year Thor was Charlie Brown and Mama was the great pumpkin!! And he got a bonus costume from Children’s too! so we both got to be pumpkin together. Remembering Thor today and everyday, as we celebrate this fun holiday! Last year I remember Thor having the rhinovirus, but despite him working hard to fight that yuckies he had the biggest smile and want to play and have fun. Thor always found the joy in everything!
Happy Halloween everyone, I hope you have a fun filled day! 🎃

Thor got the cutest pumpkin costume last year!! It means a lot to these kiddos and their families to get a fun costume and have a chance to be a kiddo during their time in the hospital!

Lighting a candle tonight for my beautiful courageous boy Thoren Loch 💙
We also craved pumpkins today and made a very special white pumpkin for Thor.

Holding our angel families close tonight as its pregnancy and infant loss awareness day, light a candle for you angels at 7:00pm. 💗💙

💙💗Wave of Light💗💙

Tonight at 7pm local time, please light a candle in memory of all the babies that have died too soon to help us create a continuous wave of light across the world.

Please share a picture below of your candle and tell us who you are remembering tonight.

To those who have never lost a child,

You often tell me “I could never imagine” when I speak about parts of our journey but during pregnancy and infant loss awareness month, I ask you to try to imagine.

Try to imagine what it would be like to be told there is nothing more they can do to save your child. Imagine sitting in that hospital feeling absolutely helpless as your baby lays in the bed next to you dying. Imagine trying to quiet the scream that is raging inside you shouting and begging to wake up for this nightmare.

How would you spend their final hours? What would you say? What would you do?

Imagine sitting there with your baby in your arms and your hand placed on their chest. Imagine feeling their heartbeat weaken with each moment that passes by. Imagine watching the RT’s shaking hands as they pull out the breathing tube for the last time. Imagine feeling your baby’s chest rise and fall and then never rise again.

What would your final words to your baby be? What would you do when you hear the doctor call time of death for your baby?

Imagine what it would be like to hold your baby as their body cools and their skin turns grey. Imagine holding your baby and hearing the loudest silence of your life as they make no movement. No noise. No machines beeping. No heart rate to hear.

Would you hold them for hours rocking them in your arms? Would you take pictures?

Imagine what it would feel like to lay your baby down on that hospital bed knowing you would never hold them again. Imagine gathering all the strength in the world to take those first steps out of the hospital room, leaving your baby behind.

Would you crumble? Would you scream? Would you be numb as you walked down that long hallway and out the hospital doors?

This is just a glimpse into what it is like when your baby dies.

So please, take a moment and try to imagine what it’s like to walk in my shoes. Because if you think it is hard to just imagine it, then you can start to understand what it is like to live it.

Yes I do 😭💔 Many Phases And Faces Of A Mother's Grief

October 3rd: Dates
July 14th, 2022- June 3rd, 2023

October 2nd: Sunrise.
“I’ll search for you till my last breath, in the sunrises & the sunsets.”
Every morning I look to the sky to see what Thor has painted for me today in heaven. 👼🏻

October 1: “Say their names”
THOREN “THOR” LOCH GRIFFIN
My beautiful courageous boy.

October is Pregnancy & Infant Loss awareness month 💗💙for all of those that lost our angels, I pray for peace and love this October and every month.