One of those days…
When she tells you that she’s going to get sick…
She follows through on that promise.
One of those days that I’m grateful we already have an appt scheduled.
…And I had the most beautiful hair…
This picture is a couple months old.
When she was in the hospital I was scheduled to see Wicked w/ my Dad.
The night ended up a bit of a let down. Things happened that made it not what it should have been. Things beyond the “it’s bad enough my baby is in the hospital…”
But the whole time, even through the ick…
I had the most beautiful hair.
Styled by none other than my Angel.
And yes, I kept it like that through the whole show.
Chaotic Cute
*Fighting off a cold. In my absence you get a full dose of my chaotic cutie in her “I dressed myself like a princess” mode. Enjoy.
Yup. She’s a Mutant…or maybe just a Weirdo…
For weeks the countdown to the next CF clinic appointment has been on. Angel and Brandon both had their blood drawn for the full genome sweep to determine their CF standing.
While yes, I’ve been in a panic about Brandon’s…
I’ve also been secretly worried about Angel’s. Despite everything, I wondered if it would actually come back positive.
Don’t get me wrong. I know everything we’ve been through. I remember the past three years clearly.
It’s because of that that I’ve been worried.
In case you don’t remember, our Journey to CF (Part 1, Part 2, Part 3) was not a clear, direct path. In fact, it wasn’t until May of 2010 and 1 positive test result that our highly experienced and dedicated, CF specialty, Pulmonary doctor said without a trace of doubt that this was CF.
So, in the back of my mind lingered that bit of doubt. Wondering, worrying what the test would show.
Tomorrow was supposed to be the day.
The city is covered in ice and the appointment has been CANCELED.
When I got the call I asked for the nurse to call me back. “Brandon is freaking out” was my excuse – but in truth, so am I.
They had to run Angel’s test first so they knew what to look for in Brandon’s. So….her results are in – his are NOT (oy).
In short, Angel has CF.
In length, the two defects that create her CF are VERY RARE. She’s a mutant of a gene mutation. She’s…unique. (we always knew that).
We don’t know the full extent of what this means for her. Or if it means anything at all beyond her having it.
We have to meet with the doctor for that.
So we’re back in a holding pattern. Our next scheduled appointment is the 23rd.
We’ll be looking for and hoping for answers for Brandon before then. The CF nurse is keeping an eye out for us. If I don’t hear anything by Wednesday of next week, they haven’t got them in. I’ll call again the following week to see. If they still don’t have anything, the next week will be our appt.
So…all we know now is that our little Angel is a weirdo. Unfortunately, this isn’t really news. (But it is a relief to have genetic confirmation that her strain is unusual, and we haven’t struggled to reach an answer that was false).
Back to ‘normal’…
The hospital is only a memory.
The PICC line is gone, only a few scabs and red skin serve to remind us it was there.
A box of leftover saline syringes lingers in the kitchen.
Two more appointments in the coming month loom ahead.
But…
We are in ‘the clear’ as much as we can be.
Angel has resumed her regularly scheduled programming.
With a little bit more joy than before.
A few more crazy antics added to her repertoire.
The songs she makes up, I listen to the words now. She’s smart & clever & playful.
She responds to Dora, Diego, and Team Umizoomi with enthusiasm and joy. She sucks in all knowledge she can like a sponge, seeping off her her sisters growing roster of knowledge.
Her love for her Daddy has expanded and grown since the hospital, with random expressive “I love you’s” popping out so much more often than before. While she still gets mad at him, she snuggles with him more.
The light that has always been our most joyful, smiling baby has grown brighter.
Or maybe we are just taking in that light with greater gratitude than before.
Appreciating and savoring it more deeply.
She is our light.
She always has been.
Nothing can extinguish her.
She’s indomitable.
She’s….our shining Angel.
Exhausted…Weak…& I Don’t Just Mean Her…
One last post on the bad. Then tomorrow I will post on our joys & blessings.
Day 1 was pure chaos. We were admitting, doing x-rays, tests, getting settled. Shipping off other kids. Packing things at home.
Angel, for her part, was having a great time. The hospital was her “new home”. While she hated the IV, her mood was stellar. Cheerful. Excited. She didn’t care she was stuck in one (decent sized) room. There were new people in the super nice nurses and staff. She got to play with an iPad (she kicked butt on puzzles) while they were running tests. There was a TV that was ALWAYS on her shows. Games JUST for her. SHE was the star.
Archie & I?? Before our first sleepless night we were exhausted. On the uncomfortable couch in the room. With a child that doesn’t like to sleep in normal situations – much less with all this going on. Vitals being taken every 4 hours. Not to mention a heating/cooling system that is wonky and either too hot or too cold.
Strong. Boy, was my girl ever strong and brave. Faced almost every situation with a smile. Hated the IV – for about 12 hours, then didn’t care as long as you weren’t trying to take off the tape, or take out the IV. Hated the room that she was getting the PICC in…but then, don’t we all? It’s darn scary. Screamed in pain when they put in the anesthesia – but to be honest I might have a little when they put it in my hand – that stuff burns!! She was brave and strong, and charming and disarming. Everyone loved her.
I was weak. I had to run from the room when she started screaming before the anesthesia even touched her hand. I had to leave the room, or call in the morale team whenever they took blood from her PICC because I couldn’t watch, or listen to her cry.
I wanted to beg the doctors to let her stay in the hospital. Because I was scared of the PICC. Of a relapse at my incapable hands. Of popping “The Bubble.”
I only cried once – the day they put in her PICC – and only for a few minutes.
Maybe that’s the problem.
I’m still so exhausted. So worn down.
So is Archie.
We feel like we’ll never “Catch up” on the sleep lost (if there is such a thing)…or if we’ll ever be able to sleep right again.
We knew it was coming.
I wanted the “first time” out of the way…but I NEVER wanted the “first time” out of the way.
I need to cry.
I need to sleep.
I need to be able to go back to a time when I could pretend it still wasn’t real.
But I can never get that fantasy back.