Working to Understand it All.

 As a mom I am finding it challenging to comprehend many things today.

I am STILL grateful and know we have many blessing past, present and future, yet I don't want that all to be a cover for all the emotions I feel.  I haven't ever hidden too much throughout Emily's medical SIOD journey and won't begin now.

First off, if you did not ready the entry before this blog- please take 2 minutes and do so.  Next know that today is a different day and although I am thankful I am also scared, upset and frustrated.  I also want my readers, supporters to know that I am not ever looking for answers.  I write to help keep log of our journey, to help others walking the SIOD path & those with medical journeys of their own and those who want to keep update on our girl, Emily and finally as a cathartic process for my well being.

I find it difficult to comprehend why wearing a mask is seen as political?  I find it difficult to comprehend how anyone else's selfish acts deem it okay for anyone else to have to be put in harms way when there is scientific data to show otherwise?  It is NOT okay that at 5 am this morning as I held onto my daughters hand, comforting her thru an episode holding back tears that after she was done her first words were that she wasn't ready to be called home! 

It is NOT okay that after getting our hopes up for a specific antibody infusion she was going to get today we learned that the one criteria overlooked is that she doesn't weigh enough and can longer get that infusion to help her combat COVID19.  It is NOT okay that even though it was a trial and government parameters and we knew it wasn't a cure, but it had given her hope was shot down.

So where does this leave us?  Waiting, Watching and Seeing.  This is nothing new for us mind you.  It doesn't make it any easier though.  After our ER trip Wednesday all Emily can think about is how she is dying.  She prays to God, Jesus and Mary a lot and asks them not to take her home yet, please.  Is she clinically that bad- NO- and thank goodness.  After getting word this morning she could not get the infusion she said, "I am going to die, aren't I."  This is not okay.  

I said, "no!" 

 She replied, "yes, this is bad.  I have COVID and my body can't fight it."

  I retorted, "EMILY, you have SIOD and if you were going to die it would have been years ago.  You have fought so much.  You will beat this, too!"

  She said she isn't so sure about that.  She said, "Why won't people just wear a mask, mommy?  For kids like me?"

I share these conversations with you because it is not okay that we must have these kinds of visits with each other, yet I am grateful she shares so much with me.

I feel so for Joe trying to recover from COVID on his own isolated upstairs.  I feel bad for Taylor-Jo as the younger sister, exposed yet doing all she can to help me out.  I feel bad for Grandma J who also has been exposed because of us because she is the ONLY other person here who knows how to help care for Emily and give her her medications. I feel bad and sad for other families who have been walking the COVID19 line.  I feel sad for so many!

If you are still reading this, there have been so many reaching out and saying, what can I do or if you need anything let me know.  Well- here is a short list so listen up and see how in 30 seconds to maybe 5 minutes you can help- choose one, two or all of the following:

1. Wear a mask in public.

2. Watch this new video we have, like it and SHARE IT to bring awareness to LGF and SIOD!

Believe in Little Giants Foundation

3.Share this post!

4. Giving Tuesday is Dec 1st!  Go to our ShareOmaha page and GIVE. (Matching Funds starts that day with our affiliate MCF as well!)

GivingTuesday402

5. Joe and Grandma J's birthdays are Dec 5th!  They always get the short end of the stick.  Joe turns 54.  Grandma J turns 80.  Send them a text, a card, or give them a call to wish them well and help lift their spirits.  (if you want addresses text me or email littlegiantsfoundation@gmail.com)

6.  Emily is digging Campbell's Chicken Noodle soup right now.  Drop some off on our porch per her request, please. She will share with Daddy.

BELIEVE-

Mommy Erin ( doing my best to stay strong, healthy and fit in mind, body and spirit for my family)

Thankful...

 We give Thanks for one another.

We give Thanks for those who do unselfish deeds.

We give Thanks to those who wear a mask.

We give Thanks that Joe got a second test.

We give Thanks that we have room in our home for Joe to isolate upstairs.

We give Thanks that Grandma J could take Emily last Saturday and keep her safer from exposure,

We give Thanks that Grandma J knows how to care for Emily.

We give Thanks that Taylor-jo and I got some quality days together.

We give Thanks for remote learning.

We give Thanks that Emily’s seizures the past two days were small.

We give Thanks that when Tay and I dropped off groceries for Grandma and Emily this  morning I could break the barriers and  comfort Em.

We give Thanks for grocery pick up services.

We give Thanks for our team of doctors.

We give Thanks to the healthcare workers in the ER today.

We give Thanks to Emily’s nurse that was on who cared for her 12 years ago and remembered her from her transplant!

We give Thanks for the precautions in place.

We give Thanks for IV fluids and meds to treat the symptoms for now. 

We give Thanks for supportive friends and family.

We give Thanks that even though Emily now has tested positive for COVID19, too that she can beat it.

We give Thanks for her resilience!

We give Thanks for her attitude as she said, I just am telling my body this is like a bad cancer and I beat that twice so I can beat COVID, too!

We give Thanks to Kylie Squiers photography, as this isn’t how I imagined debuting this video tonight, yet know it will shine out for Emily! 

We give Thanks for this SEASON and the REASON; even though I am scared, I BELIEVE!

https://youtu.be/W-kMLlR1AZ8

Tag Team

 

Joe and I are used to being a tag team when it comes to caring for our children and in regards to who is with whom when doing the doctor thing.  This past week really got to me though as the risk for infection becomes higher all over including our state.  We cannot be transmitters of this pandemic as Emily's SIOD disease keeps her with a severe immune deficiency and it would be a huge risk of morbidity.

That being said there are times we have to take her in to be seen and there are times where telehealth will suffice.  Joe took her into her oncologist one day and I stayed with Taylor-Jo (her younger sister) at home while she did remote learning, then next day I took Emily to her infusion and labs while Joe stayed home with Tay and the next day both of the girls had telehealth and our Morkie, Pumpkin jumped in on the action. 

We are watching a few things on Emily in regards to oncology and kidney, yet nothing to get too excited about right now.  As Joe and I continue to tag team we hope it provides some solace to other families going through a medical journey as well, that we are not in this alone. 

Thank You and Save the Dates!

 

We THANK YOU Veteran's past, present and future for your service!

SAVE THE DATES!

For #GivingTuesday402  on December 1, we can respond to 2020 by acting together... as

ONE. Together, we can harness the power of ALL, with ALL gifts and ALL ways of doing good. Give an early gift with donation code GIVINGTUESDAY at https://shareomaha.org/littlegiantsfoundation.

&

ALL NEW donations  received Dec 1- Jan 5, 2021 take a look!