by Sarah | Feb 14, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), PICC, Special Needs
She is our challenge.
Defiant and fiery – but so easily turns on the charm with her doe eyes and a smile that you find yourself fighting HARD to keep your smile. She’s cute as a button, and the little snot knows it too.
Her whole life she’s looked her challenges in the eye and laughed.
Torticollis? “Puh…watch me straighten my head out”
Hypotonia? “Pshaw…you say I won’t walk until later? Watch me and my crazy crooked gate at 12 months. (And just wait, I’ll run at 15 months).”
CF? “Ha! I got this…”
And she (mostly) has for six years now.
CF? “I told you…I got this…”
But she doesn’t.
Something is falling behind.
It could be a tough infection that’s skillfully hidden from the throat swab.
Or maybe her “poor” weight gain is exacerbating her CF.
Either way, she’s not maintaining weight. In fact, she lost this time.
Worse, her lung functions & saturation levels do not make her pulmonologist happy.
And now the challenger of rules and attitudes and restrictions is going to be challenged again.
Tests.
A Chest CT.
A bronchoscopy.
We’re going to get results quickly. By the end of the month we should know what we’re facing next.
Maybe IV antibiotics.
Maybe a g-tube.
Maybe both.
Doc says CF is more aggressive in girls.
So Doc is more aggressive toward it in girls.
Doc sat on this concern for almost a year.
Watching.
Waiting.
Believing it would improve – that K would knock it out of the park.
And she almost did – back in December we were sure trouble had passed.
But trouble came back.
Now is where life gets interesting.
Where we go on a strong offensive.
Time to once again laugh in the face of this challenge.
Whatever it ends up being.
First step.
Tests.
Answers.
Then we fight.
by Sarah | Dec 28, 2012 | ADHD - Adult, All About Erik, BiPolar, BiPolar with Hypomania, Depression, Special Needs
I have depression, amongst other problems and it’s killing me slowly, but surely. I’ve taken medications and been in therapy almost all of my life.
Nothing seems to take, nothing seems to help.
I have a wife, three kids and I should for all intents and purposes, be a happy person.
But I am suffering. I feel little else but pain and loneliness.
I don’t want to be this way, but I don’t seem to be able to escape it. It’s akin to drowning, being so close to the surface yet feeling the weight pulling me back down.
I want to be happy, to enjoy my family, to enjoy life, and be a happy, productive, positive person.
I seem to infect everything I do with my doom and gloom, my job, my friendships, my marriage, my kids, the list goes on. I suspect my wife is tiring of me. I think my kids are growing apart from me. I can barely function at work without causing problems. My friends don’t want me around because of my negativity and gloom.
I’m at the end of my rope.
I have been suicidal in years past, the most recent last year. I was in a group therapy class for a while which really helped, and some new meds that I really thought were working.
But my meds crashed hard on me, which they all do invariably. Tried several others this fall, had a myriad of bad side effects, so I decided (after discussing it with my Dr.) that I needed a medication break. I haven’t had one in several years and I have bouncing from medicine to medicine. But this leaves me in my bleak state, and barely able to function normally.
I think at some point I am feeling sorry for myself (or so some people tell me), that I am just wallowing in my misery. But I WANT out, I don’t want to stay like this anymore. I also think that if I dismiss my problems as feeling sorry for myself, I may not be accepting that I have a truly crippling disease. It’s chronic. It won’t kill me, but it will make me wish I was I dead. It will not eat my physical body like cancer. Instead it will feed on my soul until there is just a husk left, no personality or self anymore, just a mess of quirks and poor decisions, unlovable or unwanted.
Does anyone understand this? Do I feel alone for a reason? Or is it just self pity?
I have had a lot of people tell me that I just need to stand up and be strong. To read self help books. To suck up my weaknesses and stop feeling sorry for myself. I literally don’t know where I stop or start anymore. Where I belong in the world. I know that I need to be with my family, but I don’t want to drag them down to my depths of despair.
And that is where I am.
In despair.
I accept and own all of my actions as a result of my problems. I don’t advance at work. I don’t provide well financially for my family.
I am not the husband or father I want to be.
I am not the person I want to be, seen as someone who is likable and respectable.
Who am I? Where am I?
*Written by my husband Erik. He has spent the past year in deep struggle to regulate his depression/bi-polar/ADD issues – including a myriad of diagnoses & medications. Right now he is in a very dark place and has written this. With his permission, I post it. Please offer him as much support as you can.
by Sarah | Dec 13, 2012 | All About Kennedy, All About Molly, All of Us, Autism, Special Needs
[flickr id=”8265585712″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”none”]I remember writing many letters to Santa. Asking for Cabbage Patch Dolls, Ballerina Barbies, and Star Wars figurines (Princess Leia, please…and ewoks).
Santa ended up on the receiving end of so many of my wishes and hopes. Many unmet, and many that were.
Not once did I ever ask Santa for something for my brother.
Ever.
And yet…today as I read these words from my middle child, “Can you get my sister a barbie for her”.
My heart is just filled with pride. Joy. Love.
The past couple of months have been difficult.
Behaviorally.
Emotionally.
The end of the year naturally causes chaos, but outside forces have added so much more to our lives that some days I fear one, or all, of us might just break.
And then I see the kindness hidden under layers of quirks. The love expressed – perhaps with the help of her aide, perhaps all on her own – toward a sister I often have to keep her from abusing.
And for a little while.
Just a few minutes.
There is peace.
by Sarah | Nov 27, 2012 | All About Kennedy, All About Molly, Anger Issues, Special Needs
After a pleasant couple of months with the girls (we won’t discuss the teen today) – things are going downhill at a rapid pace.
Molly is starting to fall behind in school. Her comprehension of lessons she used to excel at is slipping, her grades are following suit. I have no idea on her behaviors in school because we missed Parent Teacher conferences in the wake chaos around the teen’s hospital stay. I’ve contacted her teacher in hopes that we can develop new ways to tackle this and keep her going. She’s so smart, I don’t want her to lose that edge.
Kennedy.
Oh, Kennedy.
Her anger has always been an issue. While we’ve been seeing a massive resurgence of her anger – another threat has been lurking, ready to pounce on us out of nowhere.
Lying. Stealing. Manipulation.
I always knew she was a good liar. I kept an extra eye on her when I could.
I don’t know if it’s the recent stresses on the family, or just being in full time school, me going back to work, or just testing limits.
But it’s blown out of proportion.
Over the past two weeks we’ve caught her in two lies, the latest involving stealing. Then lying to me three times about it.
We’re calling the counselor.
She’s having recess revoked as punishment.
Now I just have to figure out how to punish her here at home.
Threats of Santa not coming have no effect.
How do I get through to this one?
What punishment would you suggest? She shares a room with her sister, and some punishments would affect both of them, which isn’t fair to her sister. So keep that in mind.
by Sarah | Nov 23, 2012 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
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.
by Sarah | Nov 7, 2012 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Me, All About Molly, Cystic Fibrosis, Special Needs
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.
You are home.
You are whole.
She is our challenge.