Get That Dirt Off Your Shoulder.

So yesterday blew.

It really wasn't that bad but being in the hospital totally has affected my mood. I cried a lot yesterday. Had panic attack Sunday night and I shook so bad my teeth chattered.

I really thought while it was happening "wow my teeth are chattering....that's impressive."




The nursing staff has been great. Everyone is very professional and friendly. Makily is handling it all well and is having a cartoon and toy fest.



She actually lifted her head on her own here and there for the tech that hooked all the electrodes to her head. She didn't cry for one second. I'm amazed at this child that has matured from screaming the the second they started hooking her up when she was little to seeing her actually do what SHE can to help. She's amazing. Always has been and always will be.



The hospital definitely brings back some scary memories. We are in the peds unit (we have always been in the PICU here so it's a nice change). It's adjacent to the PICU though and the elevator is right in the PICU hall. As soon as I hit that hall I was overwhelmed with memories of her heart cath, how serious it was, how scared we were.....and again how AMAZING she is. Always has been....




Yesterday we had a moment with Jakob that broke my heart. He came in the room and looked at his big sister. She was in a hospital gown (ugh makes me wish even more now I had remembered the pink girly gown I had made for the trip specifically), one of the green ones, on green sheets and with her head all wrapped up to hold the EEG electrodes in place. Jakob looked very sad and said "Mommy, Kily dead.....Kily dead?"

*long pause as I try to fight tears*

"No baby sissy is just sleeping."

Then he got up on her bed and rubbed her leg and said

"Kily night night?"

"Yes baby Kily night, night."

SOB

SOB

I didn't even KNOW that Jakob even knew what "dead" was so the entire comment really upset me. My nephew had asked the same question years ago when Makily was sleeping really hard. He too was relieved Kily was okay and gave her a kiss on her forehead in relief. She's so fair skinned and if she is sleeping hard and catching flies, 'I can see how one would think that, especially a child.



After that conversation I began to wonder if we are somehow scarring Jakob from exposing him to the medical side of all this. I wondered if he is sad that lately Mommy has been gone here and there. My friend Cheryl Paquette shared an entry on her blog written by her daughter Emily. It details her outlook and view on her brother who had a genetic condition that was similar to Makily's. Sadly her brother Bryant passed away after LIVING a full life for 20 years when his parents were told he'd likely die in infancy. Another awesome kid always was......and always will be.



I am still working on vloging. It's harder than I thought because I find myself rambling and wondering if I am just rambling or if I'm interesting or not. LOLOLOL Give me time I'm working on my stage fright okay?! That and every time Allen I watch my tutorial on bib making we both end up hysterically laughing at me. I crack me up with how dingy I can be.

So while yesterday was hard, I am determined for today to be a good day. I brought a "learn to knit kit" and I'm actually gonna try to do that. Another special needs mom of mine will be here today, her daughter is having surgery so keep her in your thoughts. We will be able to keep each other company though so that's nice. My friend Whitney is bringing me dinner tonight too so that's plenty of distraction from anything sad and believe me friends THERE IS LOTS OF SAD at the pediatric hospital. Yesterday while downstairs I saw a woman with a baby on her hip. She was pushing on IV pole and baby was hooked up to two IV pumps and a pulse ox. The reality of that situation was HEAVY. I wanted to hug them both but decided against it. lol

Later on there was a lady with a TEENY baby in his carrier. He had oxygen on his face and was just adorable. I walked by her twice and then had the overwhelming urge to say something to her. I finally did. I just told her how beautiful he was. She told me he had been a 24 week micro preemie. He was seven months and TEEENY. She said he had all sorts of gastro problems as of late and she didn't understand why. He had a g tube also. All the problems she described Makily had been through at that age so I told her what I knew. She looked at me dumbfounded and said "How is it you can give me all this information but the doctors can't?" I jokingly told her I graduated from the medical school of Google. I told her to watch the nurses, ask questions and research EVERYTHING. That's how we got through it. I gave her my number and I hope she uses it. :-)

I got a phone call yesterday that brightened my entire day. It was great chatting even though it was about rectal water, you know who you are and I do hope we can do it again....lol Love you.

So while some of yesterday was emotionally draining it had it's bright spots and I am feeling better today after a good long nice night's sleep. I took a sleeping pill last night and wow did it work like a charm, I usually can't sleep in the hospital....if I do it's fit full.

I love wearing her name.


I'm gonna get up this morning in a little bit and get that dirt off my shoulders and continue trying to be positive.
*WARNING LYRICS.*


I love the new start I have made and I am determined to keep moving forward and leaving old, sad and negative people and things behind. It's hard, it's sad sometimes but DAMN there is just too much living to be done to be so damned depressed.

I am Super Woman you know?




I will leave you all with a G tube Fail photo. Enjoy.

hehee


Love to All,

Trish