make each day count.

it's Sunday.

fancy pants are on and i remembered to take pictures this week.

it's been a long week!

so much has happened, it seems.

my dear sweet neighbor's little boy went in for heart surgery on wednesday up at Primary Children's.  aubrey and i lent he and his mom her and Connor's tiny superhero capes to take with them to the hospital to help bring them extra comfort and luck.

we even added Jace's initials and my friend's name with some of Connor's medical tape:)

 the capes worked!

 Super Jace did amazingly well and was home that same night, and out playing the next day!  crazy, right??!

aubrey and i went up to the hospital to visit him wednesday afternoon, and it was our first time being back since my sweet boy died 7 months ago.  i got really anxious as we were driving that familiar drive up to the hospital......i knew it might be hard walking in those doors again, and through the halls of the hospital where my beautiful little boy took his last breaths.

luckily, as we drove up i saw that the construction for the remodeling they were doing when we were there before was finished and the whole front of the hospital looks completely different now.  we parked and walked through the front doors, but it was like walking into a completely different hospital.

a tender mercy.

i'm so glad we were able to go, and that i didn't let my fear or anxiety get in the way of visiting our sweet friends.

we are doing hard things!

every day is hard----but i am doing it.

i don't know how most days, but somehow i am getting through.

this girl helps.

i have been bugging one of Connor's doctors for months now about the further testing of his autopsy results.  i was under the impression (and so was she, i think) that further testing of my sweet boy's skin and cell samples were being done, that they were still trying to find a diagnosis for my beautiful boy.

apparently, that's not the case.

i received an email from his dr. and in it she said:  "Hi Crissy,

I have been talking with genetics, as well as the pathology lab and our quality teams at Primary Children’s Hospital.  It has been a frustrating process, and I thank you for your prolonged patience.  I think I’ve come to the final “message”, here , but this is not what we’ve been holding on for.  I believe that you have a copy of the autopsy report from January, right?  In there, is the following line:

“A postmortem skin biopsy was submitted to the ARUP Cytogenetics Laboratory for fibroblast culture, and liver tissue was frozen, both for possible future studies.”

I now understand that they hold those frozen tissue samples, with the hope that as we advance our science, we might go back and use the future testing approaches to find a diagnosis.  So for now, the answer is that we wait, as there are no pending studies unless we have new knowledge that informs testing approaches.  I know that you were hoping for an answer.  Still, I can tell you that everything that could be done for Connor was indeed done for him.  That doesn’t bring your “Sweet Boy” back, but I hope it reassures you as a mom that nothing was missed.  You gave him 100%. 

If you have any questions, we can talk (via phone or even a clinic visit if preferred), let me know. 

Keep healing,

Dr M".

this was hard for me to read.

it's heart-breaking to know that i may never know.  i may never know the name of the disease that slowly took my son from me.  i may never know what robbed me of a life with my precious baby boy. 

 i may never know.  

and that's hard.

i followed up that email with one of my own, asking if we could request testing if we came across a disease or type of disease that we thought might be what my sweet boy had.....selfishly, i desperately want to know what took him from me, but i also think it's so important that Aubrey knows, that we know what Connor had so that Aubrey can be aware and tested to see if she's a carrier of the same gene.  i think it's important that she knows!

i got an email in response this morning.  it said:  "My recommendation is that you hold on for at least 10 years, when the results might most help with Aubrey's family planning and our science continues to advance, and then revisit the questions.  I know that's a long time to hold, I really do.  In the meanwhile, make each day count." 

10 years.
this is so disappointing, and she's right, it's a long time to hold........but what else can i do??
i don't have any other options, and i have no control over any of it!  i wish i could know.  i really want to know what took my sweet boy from me!!  i want answers!  but answers are something i have never been able to get in regards to my sweet boy.  i lived his life without answers, and now it seems like i have to live his death that way, too.  i will hold on to the hope that one day i will find those answers.  someday i will have the answers i've been searching so long for.  i have hope that it will happen someday.
in the meanwhile, i guess i'll just have to try and make each day count.

happy Sunday to you..
<3