When Kennedy was diagnosed with CF we were assured that we were likely to see more trouble from her myriad of other issues than we would for CF. With the exception of one hospital stay two years ago, that’s been mostly true.
When Denver got his diagnosis at the age of 13, we knew his situation would be different. Already he had chronic lung issues (pneumonia, bronchitis, etc).
Still, given the unique nature of both his and K’s CF…and the fact that I have a document stating that genetics can not confirm the diagnosis in either child – therefore making them “atypical” CF cases…
We still never realized how fast it would happen.
We didn’t realize how soon he’d end up in the hospital.
How quickly one hospital stay could change his day to day existence.
Or the perceptions of those around him.
How he would go from being “Oh, I don’t see how they could diagnose him with that” to becoming, “Is it safe for him do this? What about his illness? We need his doctors information to let him do…”
In heartbeat.
In a cough.
In a moment’s time he went from one life to another.
Change happens fast for everyone.
This lightning speed attack of time & reality threw us all for a loop.
We’re all still adjusting.
It takes time.
Let’s just hope time gives us a little breather to catch up before we get blind-sided with another dose of reality.
The past two weeks have been overwhelming for us. With Denver in the hospital, and then home but on IV meds, life turned on its head.
Even when we were home between the meds, and trying to return to normal life, everything about our life has been in upheaval. I’ve had to look for a job again, there have been activities for school and life in general is in a state of flux. There’s been little time to sit and regroup and just relax.
In the past two weeks there has been just one thing holding me together. My friends, my connections, and the simple gestures they’ve made to show they care.
Just yesterday, at the end of the chaotic two weeks, I opened my mailbox to find junk mail – and one envelope addressed to me. Inside was a simple card with a lovely handwritten note. It had come from the Hallmark Team. See, about a week before Denver went into the hospital I was a part of the group of bloggers that went to their Indianapolis Stop on the Hallmark Tour.
It reminded me of the importance of a simple card. I’m the first to admit that I’ve become a digital being – I prefer email and text to phone and mail.
But the touching gesture of a hand-written note inside a card meant so much. Imagine how much it could mean to a member of your family, or a good friend, to receive the added touch of a card with a handwritten note meant just to them. This card from Hallmark moved me to tears – you could leave your friend a blubbering mess for the same gesture.
During the Hallmark Tour event we were reminded of the importance of just telling someone what you want them to know. Tell them you love them. Tell them ‘thank you’. Tell them to be strong, that this will pass, that you admire them, or just that you think about them every day. We all shared our stories, what we want to tell, and at points it became a room full of tears. Most especially during the video that kicked off the event:
[youtube]http://youtu.be/SvmB7s5k6KA[/youtube]
So please, tell someone today what you think they should know.
*~*~*
[flickr id=”8191555068″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”] On behalf of Hallmark I’m excited to offer this giveaway of their recordable book “Mom & Me”.
Inside the book is a wonderful little story of a Momma Kangaroo and her child, a series of questions that your child can answer, and you can record! You can capture your child’s adorable little voice as it is today, and hear their unique and creative answers to simple questions!
[flickr id=”8191552892″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”right”]I can’t wait until my girls open this gift on Christmas morning and I can start recording their answers. Questions like “What do you think Mom does when you’re not around?” and “What do you like to do to make Mom laugh?” should bring fun and inventive answers from my two little story-tellers.
Entering is easy, just leave a comment telling me what simple gesture you want to do this Christmas to tell someone you love them.
I freely admit to being a computer/internet addict.
My husband is addicted to movies (in his defense, he is equally addicted to books).
Denver is now addicted to his iPod & Netflix (i.e. Star Trek).
In the past several months we’ve started to make the conscious decision to unplug at least twice a month and reconnect by using actual words – a long forgotten art in this house it feels like sometimes.
So we unburied some board games, bought some new ones – and some new puzzles. We’re slowly building our choices of games, including ones that the youngers can play (like [amazon_link id=”B004LZ2QZW” target=”_blank” container=”” container_class=”” ]Sorry[/amazon_link] and [amazon_link id=”B00000IWHG” target=”_blank” container=”” container_class=”” ]Perfection[/amazon_link]). We have probably 5 different versions of [amazon_link id=”B0017S1Y4A” target=”_blank” container=”” container_class=”” ]Trivial Pursuit[/amazon_link] – including two very old ones like the [amazon_link id=”B0009RGXPK” target=”_blank” container=”” container_class=”” ]Classic Genus[/amazon_link] and the (vintage?) Junior edition.
We’re building a list of games we want to add, trying to find classic games we remember playing “way back when” – you know, in ancient times when 3 channels on TV forced to to be creative and play these board games.
I am plotting and trying to get Erik to agree to learn how to play Rummy. The poor guy doesn’t know how to play – and I’ve always loved a good game of Rummy.
For now our go-to game that comes out just about every time we decide to play? [amazon_link id=”B00000IWDB” target=”_blank” container=”” container_class=”” ]SCRABBLE[/amazon_link]. Between the three of us over the age of 10 – it’s always a toss-up who’s going to win.
The best thing about bringing these out is it gives us a chance to sit around and actually talk. Even though it’s often about the game or nothing – it’s reestablishing some levels of communication. Letting us relax and just have fun together so that not all of our conversations revolve around a child getting in trouble for something or a movie we just saw.
What family couldn’t stand to just have fun together without technology?
I now regularly stare at my wishlist for games, and scope out the board game section at Goodwill. For Christmas I hope to add a few more options for family togetherness to my list.
With Christmas coming up, don’t you want to add some fun under your tree? What’s your favorite board game?
When one kid is in the hospital you disappear into a bubble.
The world outside of that room fades away and you are nothing but medicines and doctors and nurses and monitors.
The last time we were in the hospital we didn’t know Denver had CF. We were there for just three days and everyone was always visiting Kennedy.
This time it was Denver in the hospital and Kennedy couldn’t visit (they don’t even like CF kids living together but…well, siblings and all that). We couldn’t all be up there, and we had to switch things around and find someone to watch the girls and – chaos reined until my in-laws were good enough to take them over the weekend.
We were able to focus on the one child. The sick one. The tests and orders and plans for what would happen with him.
In the bubble things are protected – but you don’t feel whole.
Coming home is chaos. Suddenly girls are screaming and running and Denver is teasing them and it’s loud and crazy and gives me such a headache.
The bubble bursts into wild days of life bursting at the seams and homework and chores and stories of all kinds.
The bubble is safe, protected, sheltered.
Life on the outside might be dangerous, but suddenly you have peace you didn’t before.
Just a couple of days ago I lamented the wait to get into a doctor. I think I knew then. I just knew. That’s why I panicked.
I ignored the instinct and let myself be soothed.
And he ended up here.
He probably would have anyway, but the timing might have been better – but that is a different post for another day when I can step away from my anger.
Before the doctor entered the room, she was already sending the nurse to find him a room, writing orders for strong antibiotics, a PICC line and extensive breathing treatments.
He’s in until Monday.
But he was just diagnosed a year ago.
Already he’s in for a CF related illness.
He didn’t start getting sick until about 5 years ago.
It was once a year.
This year – it’s twice.
Knowing this disease is progressive never scared me as much before. Not until it took less than 2 years for Denver to end up here.
Not until it took 2 days to get bad enough to require this.
Not until knowing that despite the amazing functions he usually has, the life full of Cross Country & playing, he could degrade so far so very fast.
As a single mother, living with my parents it could have been more difficult – but Denver was always an easy kid.
Those milestone ages and events? He met the deadlines perfectly.
The ages used for sizes on clothes? Met those perfectly too. Moved into 6-9 month clothes at 6 months. Until he grew into size 7’s, that was the norm.
Everything for him was met at the perfect age. He was well behaved and polite – and still is to everyone but his ‘stupid parents’ (he is a teenager, after all. We are the enemy now). He’s a good kid.
I never really had to worry.
The only time I worried & panicked – Mom instinct had kicked in. He went on a camping trip for Scouts and I knew before he left something was going to happen – and it did. That’s when he broke his wrist. Call it a premonition, call it instinct, but I did panic (once the phone call came) until he made it safely home.
That was all before the light bulb went off and his chronic pneumonia finally hit me hard enough to test him for CF.
Now he has the diagnosis but the unusual nature of his diagnosis (and his sister’s) they are both listed as “atypical” CF.
The thing that worries me, is that I’m sitting here listening to wheezing, he’s struggling to breathe, but despite a nurses first instincts, we aren’t going to the ER. The doctor dismissed that idea. We’re being made to wait to go in until tomorrow. If his condition worsens we’re to go to the ER, otherwise we sit here for over 24 hours past when he woke up because he struggled to breathe.
I’m hoping that it’s because he has no fever. That it’s a logical explanation.
But I can’t help feeling like maybe the atypical nature leaves them to react less.
I’m sure I’m just being over-protective and paranoid because I’m so very worried.
When Kennedy was diagnosed with CF we were assured that we were likely to see more trouble from her myriad of other issues than we would for CF. With the exception of one hospital stay two years ago, that’s been mostly true.
