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Friday, March 20, 2020

Friday, March 20, 2020

I was thinking of waiting until after the weekend to give an update on how we're doing, but I read about the Red Cross's severe blood shortage so I thought I'd update now to help get the word out.


It's been about a week since Julia's passing, and we're doing OK.  We had a long time to come to terms with everything as her prognosis from the very start was poor.  So we're not dealing with the shock that often comes with a sudden death (that shock happened last year with her diagnosis and then the whole "days to live").  And as many people who have cared for a terminally ill patient have said, there is relief as well.  Relief in knowing they are no longer suffering.  

The first day back home was just really strange.  Reed and I had no idea what to do.  Everything felt wrong, because we'd been so used to having something majorly-major always on our mind.  Even on the rare occasions when I got him home to take a break... it was just that, a break.  A break from our super important medical reality.  And when we had two hours to eat and watch a TV show, we were constantly aware of the clock and thinking of the next time we should call CHOP for some reassurance.  Dinners at restaurants and sleepovers with Gabriel came with a lot of guilt.  For 1.5 years.

My life has been attempting to cram essential living activities (in between hours of hospital commute and hours of Facebook management) in between trying to visit with both of my kids.  Even things like doing dishes came with guilt.  Because I was prioritizing cleaning dishes over seeing either of my children.  I couldn't vacuum, or do laundry, or clean out my car, without this horrible feeling that I SHOULD be somewhere else.  Doing something else.  Even if I had just gotten home from the hospital and it was 3am.  This oppressive feeling of "you need to be doing something else" smothered even the most basic task.

And there was no such thing as a hobby.  The guilt with things I actually enjoyed was so bad I just stopped doing anything I enjoyed.  A long time ago.  I could even be sitting by Julia's side, holding her hand while she was sleeping, and I was still unable to read a book.  I felt like I NEEDED to be doing something.  Researching.  Taking pictures.  Memorizing her face.  Something.  

And then it was just all gone. 

The loss of a child is a major change.  Possibly the most major change someone can go through.  On top of that, I finally have some time to think about the loss of my dad (which happened just the day before Julia was diagnosed).  But to push things far into 'surreal land'... this whole coronavirus is happening (which, according to Reed, I keep calling the Chordoma virus).

It is so strange trying to grieve and accept our new normal, when literally nothing is normal.  Our grocery stores have limited stock, especially with staples that picky people like me eat (ground beef and chicken).  All the restaurants are closed, which have always been my comfort go-to.  We're not supposed to have friends over.  Driving by empty parking lots in the middle of the day is very weird.  We had to take Gabriel to the doctor (suspected pink eye), and the nurse and physician just came out to the car to do their exam.  

It's all very strange.

I read so often that when parents describe the grief of losing a child, they would say, "their world stopped but everyone else's continued".  But in our case... everyone else's stopped too.  It makes this all feel like a confusing dream.  

And don't even get me started on my medical anxiety... which, I should add, has been pretty accurate as far as "worst case scenarios" actually happening.  So, needless to say, I am convinced we all have the virus and we will die.  It doesn't help that my main anxiety symptom is shortness of breath. 


Reed is now home again.  I had gotten used to living by myself in our house for over a year.  No one here.  No one having to deal with my mess.  No one making noise.  No one caring that I had Keeping up with the Kardashian's really loud on TV at 5am... (Reed cares - believe me).

Gabriel is back, and I pretty much have no idea what to do with a toddler.  Julia was never this old outside of the hospital.  He has lots of opinions.  Mostly, "Want chicken nuggets," and, "I don't like it!"  ... typically back to back. 

But Gabriel is seriously a blessing.  He brings so much joy and purpose to us right now.

Let me tell you, when I found out I was pregnant with Gabriel, I was NOT HAPPY.  I had injured my back while pregnant with Julia, and treatment got delayed until after I delivered.  The plan was 3 months post-partum I could look into a spine specialist to confirm either rehab or surgery.  Well... 2.75 months post-partum I had a nagging headache all weekend.  I knew what it was before I even took the test.  I just cried.  And not a happy cry.  I was SO MAD.  I called all my friends and complained, and most just thought I was joking (I think I found out on April 1st, so I can't blame them).

But... maybe God knew we'd need a Gabriel 2 years later, and my convenient back-injury recovery schedule didn't fit his plans.  

So, we have this little ball of happiness bouncing around the house.  He's just played and played and played.  He refuses to go to bed until he's too exhausted to stay awake (so... the toddler's bedtime is about 2am right now).  To be fair, both Reed and I are adjusting from a night schedule as well, so we'll all work our way back together.  Not like we have anywhere to go since we're all stuck at home...


I think both Reed and I are similar in how we're dealing with this, which is crazy since we're both super different otherwise.  But, we want to be happy FOR Julia.  Julia would not want us to be sad.  Julia wouldn't want her baby brother, who doesn't understand, to have depressed parents.  We are sad, of course, but we instantly channel our sadness for Julia into our love for Gabriel...  For Julia.  If that makes sense.  If Julia were here, she would be playing blocks with Gabriel; so we play blocks with Gabriel.  She would be smothering him with hugs and kisses; so we smother him with hugs and kisses.  She would have snuggled with him on the couch with her iPad; so we snuggle with him on the couch with his iPad.  

When we see Gabriel smile, we feel Julia smile.  So we have to smile.  How could we not?

So while there are absolutely sad times, and confusing times, and things will likely get harder before they get easier... we are going to be OK.  Because Julia would want us to be OK.  Because Gabriel deserves us to be OK.



And in other news, Reed says he was thinking of "writing something for your Facebook people".  I'm super intrigued by what that might be... because as far as I knew, he barely knew we even had this whole thing going on.  So, that might be forthcoming.  


But the other reason for my post:


“I am looking at the refrigerator that contains only one day’s supply of blood for the hospital,” said Dr. Robertson Davenport, director of Transfusion Medicine at Michigan Medicine in Ann Arbor. “The hospital is full. There are patients who need blood and cannot wait.”


With the new Pennsylvania COVID-19 guidelines in place, we are postponing Julia's official blood drive.  (If the info on her event page hasn't been updated, it will be).  We expect her blood drive to be a time to gather and honor her, and now is not that time with social distancing recommendations.  We WILL hold that at a later day, and will keep everyone updated.

However... just like we're doing, everyone else is also cancelling their blood drives.  The Red Cross says over 2700 blood drives have been cancelled (about 86,000 donations and 80% of their incoming supply).  

The Red Cross is now experiencing a "severe shortage" of blood.

And this isn't like a mass tragedy where there are lines out the door of people waiting to donate, and shipments on their way from neighboring cities... the supply is critically low everywhere.

Red cells only last 42 days, and plasma only lasts 5 days.  Julia needed both regularly during treatment (to literally stay alive).  She would have died without donated blood.  There are kids fighting cancer all over the world right now, and their need for blood hasn't stopped just because of the coronavirus.  Add to that adults fighting cancer, high-risk pregnancies, blood disorders, car accidents... 

We can't allow the situation to be such that doctors are forced to choose which patients are deserving of blood, and which need to be passed by.  I'd hate to think where Julia would have fallen on that list... even in her best of days, given her prognosis.

The Red Cross has taken MAJOR safety precautions at local blood donation centers - fever checking, bed distancing, sanitizer, reduced capacity, gloves, etc.  

PLEASE in honor of Julia's fight - find time to go out to donate blood at your local center very soon.  Your local hospital IS running out.  Your blood and plasma WILL make a difference.  There could be a very sick little Julia in your home town, right now, not getting the blood they need, because the hospital is having to ration.  Don't let that happen.


Press Release:  

Individuals can schedule an appointment to give blood with the American Red Cross by visiting, using the Red Cross Blood Donor App, calling 1-800-RED-CROSS or activating the Blood Scheduling Skill for Amazon Alexa.  

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Wendy Lynn Nelson
Wendy Lynn Nelson
Mar 23, 2020

So good to hear from you! Glad you are hanging in. Don't know if anyone has said this, but maybe not being able to go anywhere has a hidden positive in that you guys can get used to all being in the house together slowly & it may help Gabriel with the transition from Charlene's to home since you are both there all the time. I know you are still going to grieve that's inevitable, but as you said Gabriel being there makes it a little easier. You guys are still in my prayers. I still find my self checking the blog almost everyday & was thrilled to see a post. i hope you will continue to post periodica…


Mar 21, 2020

Some nights I feel like I can't go to sleep because I haven't heard from you. After over a year of communication. I miss your updates about what everyone is doing.

I can only imagine how weird things must feel for you guys. You seem to doing fairly well considering. Just know so many of us love you, and care about how you're all doing. You've been such an inspiration to me and others. God bless you. Much love. Sweet dreams.💜😘


Mar 21, 2020

Have y'all laid Julia to rest will there be a public service for her online or not I am so sorry


Good to hear from you. It will be difficult for a long time, but Gabriel being “normal” will be a type of hope and renewal for you both! Just be patient: with him and yourselves and each other. Perhaps this isolation thing is a blessing in disguise. Be well and keep me on your list, please.

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