by Sarah | Jan 12, 2011 | All About Kennedy, Cystic Fibrosis, Hospital
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.
by Sarah | Jan 5, 2011 | All About Me, Crap
Oh, I am very weary, Though tears no longer flow; My eyes are tired of weeping, My heart is sick of woe.
~Ann Bronte
There have been plenty of posts for me to write in recent days. Recaps of 2010. Dreams of 2011. The kids are back in school. Life is returning to our level of normal. All PICC lines are gone, casts…
But my fingers haven’t typed a letter.
I’ve been sick. Sick as a dog for the third time in 2 months.
And to be honest, 2010 sort of sucked. We had some highs, to be sure. Some wonderful notes…but we had a few pressing lows, and some that haven’t even been dispelled yet. Areas where we linger in the hellish limbo of unanswered questions.
I lost my grandmother this year. My spunky, vibrant, bossy, stubborn grandma was taken within a week of a cancer diagnosis. Suddenly, cruelly ripped from our lives.
My Angel faced her first real level of illness at the same time. Her first severe round of massively strong antibiotics to defeat an infection that is beyond unique to CF patients. And then she was admitted to the hospital six months later for the first time. We had isolation, PICC lines, IV antibiotics…so many new and frightening evidences of her illness.
We heard the ‘official’ word “Autism” with both relief and tears. Riley faced kindergarten and challenges within herself…and gave us more challenges than we were sure we could manage.
Brandon broke finger in the beginning of summer, his wrist at Halloween. He got straight A’s…and then became faced with a possible CF diagnosis for himself as well.
For the last two months of 2010 there was someone injured or sick at all times. There was no break, no respite. I, who by law as a mom am NEVER allowed to get sick, as I said above I’ve gotten sick 3 times in the past 2 months. Right now it’s so bad, I’ve been laid up since Saturday. I haven’t been able to talk for a week. It sucks big time.
My husband has been struggling against his depression with as much strength as he can muster. The end of the year between his birthday and the holidays are always soooo hard on him, and the added stress of constant illness…I fear he’s ready for a massive break.
I’m tired of crying – but then again, I still don’t think I’ve shed a tear.
I’m exhausted from the constant beat down. I’ve taken maybe 5 pictures in 2011 because I’ve been sick for all of it…and the picture above is one of them. I had to find the beauty somewhere…and I did in the gorgeous flowery pattern of frost on our truck’s windshield.
And I’ve found it in my Riley’s beautiful way of taking care of her sick Momma (which she has taken to calling me over Mommy). In Angel’s snuggling with her Daddy, sad because we can’t dare to let her snuggle with me.
Once I am better I can take the reins and find the silver lining again. I can free up my husband to release his restraints and rid himself of some of the burden’s beating against his fragile wall of strength. I can recover my house from the clutter of Christmas. I can make sure each of my children know I love them, and I’m not just the grumpy witch on the couch that semi-yells at them to be quiet w/ her non-existent voice (seriously, it’s SAD how I sound).
But right now…
I’m not there.
I only hope tonight is the night I am able to SLEEP. To get past the worst.
Because I don’t like being here.
I want to be there.
Where I had my sh*t together. I was “ready” to face whatever.
Right now I can’t even face myself. (seriously, be glad there’s no self-portrait here today. *shudders* It would give you nightmares)
by Sarah | Dec 31, 2010 | All of Us, Community, Cystic Fibrosis, Hospital
In ll of my years online Archie has been frustrated. He wanted me to get “real” friends. People that I could see face to face, call on the phone (even though I have issues using the phone). That were flesh and blood before me, not who-knows-where across the internet.
Archie hates when I tell this, because he says he does know that the people are “real”…they just aren’t close physically. He knows how deep my friendship with Jess is, after all she’s the first one he called after my surgery, and on other occasions. He would just prefer that my ‘best’ friend live across the street (face it, wouldn’t we all like that).
ANYWAY. I’m getting off track on the point of this post. We were admitted, I tweeted about it and left it at that.
Within an hour, I had a message from the beautiful Emily. It said simply, “What do you need? Tell me what you need and I’ll make it happen.”
I have often talked about the Indianapolis Blogging Community and how wonderful it is. The parties in recent months have enhanced that fact.
But I had no idea what the sense of community in both the bloggers and in my own neighborhood would mean.
Casey came to the hospital loaded down with goodies that Emily had organized. A pillow pet was in there for Angel, as well as snacks from Casey & Emily, and Katy (her delectable goodies are pictured above) and Sarah and MrsBlonde.
So much that Archie and I just stared in awe & wonder at the gifts we’d been given. The support offered. Snacks, full meal dishes that only needed to be popped into the oven, among other things for which we’ll be eternally grateful.
To add to the amazing things these women pulled together for us, I came home to find our driveway cleared of snow thanks to neighbors, a small package in the mail from Michelle (another Indy Blogger), and neighbors that gathered mail and also put together small presents for our little one.
Archie and I have been so touched by the support and caring in our established (and newly established) communities, we are still moved to tears by it. I don’t think we could have made it through these past couple of weeks without these wonderful people that have touched our lives and our hearts.
IT had been many years since I have been established in such wonderful communities.
My heart is full with our blessings, even through the darkness that we’ve been moving through.
****
~Tomorrow comes the post about another lifesaver we had, rather by coincidence. It’s a post I’d been planning on writing with far more humor and tongue in cheek – but now it will be much more.
by Sarah | Dec 29, 2010 | All About Kennedy, Cystic Fibrosis, Hospital
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.
by Sarah | Dec 28, 2010 | All About Erik, All About Kennedy, All About Me, Cystic Fibrosis, Hospital, PICC
There is no way I can handle this.
I’m not strong enough.
How horrible a Mom am I that I can’t help my own baby?
I’m so weak. I can’t even hold her hand when she’s screaming in pain and fear.
I ran from the room, bursting into tears.
How can they think I can do these meds at home?
We were on our way home. I was trembling in fear. We arrived home and Archie kicked into “Super Hubby” mode. Trying to do everything to make the transition run smooth for me. To ease my panic, despite his own level of it.
His attempts were valiant.
I was just not having much success coping.
The rest of the evening and night was a disaster. I was very short-tempered. So was wonder-hubs. All 3 kids were wired, over-stimulated, jealous, hyper, impatient. It was a mess.
Archie had to do her meds…and I got stuck having to hold & distract Angel – who was unhappy with the PICC line in general.
There was no way this was going to work. I went to bed un-satisfied, un-resolved, almost depressed.
The next morning the panic had subsided. I made myself to busy work – preparing for our Christmas Eve ‘party’ at my house. The neighbor had asked Archie’s help with something…and he was preparing to go right around medicine time.
While Archie took a shower, I stared down the meds.
I dug down deep and called over Angel.
I started the process.
I cleaned the line, and started the saline…and then the meds.
I had done it.
With minimal sensation of nausea…I had administered her medication into the PICC line.
And through it all, Angel hadn’t freaked once.
Maybe…just maybe…there was a way…
*********
Tomorrow, a little bit more of the ugly…how the others are handling Angel’s doses of attention…how we’re handling the schedule (not always so good)…and so on…
by Sarah | Dec 27, 2010 | All About Kennedy, Cystic Fibrosis, Hospital, PICC
When you have your first baby.
When you have surgery.
When your baby is sick.
You’re in the hospital. In a careful bubble designed to protect and heal.
The ‘real’ world falls away.
Bills are forgotten.
Family drama – gone.
Medicines are administered by trained professionals.
Problems are solved by caring nurses or hospital staff.
You have nothing to do but care for the illness (or newborn).
Safe.
Then they say “You’re going home.”
And delicate as it is, that bubble pops.
Fear attacks you.
Can you do this at home? What if something goes wrong? The REAL world is out there….waiting with responsibilities and things to do OTHER than care for the illness (or newborn). You have to divide your attention.
On Thursday we were granted leave. We were going home.
My cabin-fever-filled husband was jumping for joy.
I was trembling in fear.
It has turned out all right.
But on Thursday I was crippled. I was afraid. We had to administer PICC meds at home. There was Christmas. Two other kids. Family. Responsibilities.
It was so hard to be joyful that my baby would be going home – free of the hospital.
All I could focus on was the fear that we’d mess up her carefully maintained schedule. That a dose would be missed. That a child would play with a picc line. The other two kids would add to the chaos, feel jealousy over the constant attention to Angel’s schedule (they have). I couldn’t handle even looking at the PICC line, much less administering a dose. It wasn’t fair to make Archie do it all…but I couldn’t handle it, could I? Everything could and would go wrong. We were no longer ‘safe’. SHE was no longer ‘safe’.
It was crippling.
I felt guilty.
I should be happy she’s improved so much so fast.
I should be jumping for joy that we would all be together at home for Christmas.
But I couldn’t.
I was too afraid.
****
*I wanted to post this last Friday, but it didn’t seem like a great Christmas Eve post. Over the next couple of days I’ll update on how we’re doing…how I’m doing…how she’s doing…how the other two are coping…how much of a pit our house currently is…all of it – the good, the bad, the ugly, the beautiful (there’s quite a bit of that – & that needs to be covered). It’s all here. Coming over the next few days. Her follow up visit with her pulm is on Wednesday and we’ll know more about when the medicine will stop & the picc line will be removed. Over the next week, I’ll tell it all….
The hospital is only a memory.
