Wednesday, December 5, 2012

In case you haven't noticed, I've been at a loss of words so to speak lately! Is it the time of year? Maybe, although I'm not finding myself hustling and bustling about.
Maybe its because the blog world seems a bit slow, maybe I'm in a funk, not sure.

Maybe, its because one of our DS friends is very sick. Even though I've seen many sick DS kids, and kids that have passed away lately, its been a long time since someone I feel close to is this sick. My dear friend Janet's daughter Aziza is fighting for her life today. I talk to this women on a near daily basis. Mostly about medical stuff, but that's usually how we meet these dear friends in the first place, right? She had what they think is a bowel obstruction, but its turned into a raging infection and she's septic with multi organ failure. Her belly has been left open and her intestines are swelling tremendously. I'm literally sick to my stomach! Its like I'm right back in the PICU again, only this time I can only console through a computer screen, and that really sucks!
Man I remember days of multi organ failure, plummeting BP's, and just plain scary circumstances. I remember feeling so alone, but I didn't have Facebook to read the comments from friends knowing they were praying. I feel like all I can say over and over is it SUCKS!! Please please pray for sweet Aziza! She needs them desperately right now!

Maybe its because I'm enjoying immensely my alone time with Jax during the day. Its been two years since I just had Jax in the house. He won't start school for a while because his medical paperwork and IEP are intricate and will take time. I love to just hold him and stare at his beautiful face. I love to make him smile and giggle. I love that he is reaching out with his hands more. He doesn't purposefully reach for things, he just stretches those arms out. Many times he touches my face. He has grabbed my glasses, ears, and even scratched my cheek! I never thought I would say that I loved that my son scratched my face! He doesn't understand what he's doing. When something touches his fingers he will clamp them closed for a split second. I love it! I love savoring these small things we so take for granted in our children. I love to watch him sleep! He always rolls almost to his belly when he sleeps, his cute little butt in the air! I never understand how that's comfy, smashing your trach into the carpet and making your bottom arm purple from laying on it. But he's just so sweet, and so perfect, I have to capture those moments in my brain forever!!

*Update* Sweet Aziza has passed away. My stomach is so sick that I'm feeling nauseous! It makes the above post so much more important, these pictures so much sweeter! This very reason is why Jax goes with us everywhere, why I barely let him out of my sight! I have to treasure every. single. second!!


Runningmama said...

Praying for sweet Aziza!

Chromosomally Enhanced said...

Oh I am sorry...good vibes...smiles

Alison said...

Praying for your friend xx

Melanie Dopson said...

Oh i am sorry for your friends daughter. I wull.keep her in my prayers. Hearing youf story and everyone elses stories just is so sad and heard to understand. i have a sister with ds buf otherwise is completely healthy. Keeping hax azizia and all of the other suck ds children/adults in my thoughts and prayers

Amy said...


Hang in there. I am praying for all of you.

I wish we all didn't have the medical pain/drama.