by Sarah | Nov 22, 2010 | All About Family, All About Me
To this day there are times when my Mom says, “I wish I had let you see more how much we struggled.” Money-wise she says we struggled. Money was tight, times were hard.
We never saw it.
Our summers were spent at the beach at my Nana’s cottage. Swimming in Lake Erie, playing on our exceedingly large inner tube (I still miss bouncing on that thing). We spent weekends there in the winter, too. Walking across the thick ice, playing in feet of snow.
Our Christmas’s were always happy and our Christmas lists were filled.
Every holiday was filled with family. Thanksgiving our house was overflowing. Piles of coats on my parents’ bed. The kitchen so full of people my mom would say ‘never again’ every year…and every year we’d do it again. The long table filled with people, the kids table right next to it. Christmas at my aunts house, so full the heater wasn’t needed for all the bodies and good cheer in there.
Dinner was always on the table. I didn’t always like it, but there it was.
I had dance, the bro had hockey.
Life was good.
I always look back on my childhood with a smile.
Were there troubles? Sure. I remember them. I remember bad times too…
But the good times outweighed the bad.
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Written using MamaKat’s prompt #164 “What made your childhood bearable? Write about it.” My childhood was more than bearable…so there you have it 😀
by Sarah | Nov 21, 2010 | Photography, Weekly Winners
All taken w/ Canon Rebel XTi.
For week 11/14-11/20/10
Due to illness and stress my camera barely saw the light of day this week. To the point that I only have a few pictures and one of them was technically taken BEFORE this week, but I missed it on last weeks WW’s.
Beauties
*These were HER gloves. I just love them still.
More beauties
Handsome
*When he’s not hiding from the camera (& even though he needs a haircut)
Holding Hands
*Shot ‘from the hip’ as Angel was talking sweet to the dog. They were so cute I had to snap w/o disturbing them.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
by Sarah | Nov 20, 2010 | About
This post is a re-post from when I first started the blog about why I chose the name of the blog. It’s been a while since I went over how/why I chose it…and right now I’m drunk on Tylenol w/ codeine after burning the hell out of my fingertip…so copying and pasting is far safer than trying to write anything coherent. It’s aged and not very current, but it’s a good start until I have coherence for deeper thoughts.
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I chose the name of this blog for a reason. One of the things I’ve found my struggling with the most is a very selfish thought…how do I redefine my vision of my children’s “perfect” lives.
When we’re pregnant we all dream of our children’s future. We imagine what they’ll look like. Who they’ll look like. The sports they’ll play, the life they’ll lead. Perfect visions of a perfect future.
Our logical brains tell us not to expect all of our dreams to come true, but it’s fun to imagine.
I, myself, pictured my girls as gymnasts and dancers. I was a dancer, a singer, and I hated sports. I thought my daughter would always be the same. She’d have long hair like I did to play with and do up. I’d be altering her dance costumes as my mother did for me. It would be perfect.
They were born still in the image of perfect. Molly, my older daughter, had a nuchal cord and was blue, but screamed right off the bat and pinked up fast. She was gorgeous. Downy white hair, bright blue eyes, the image of her dad. Kennedy was tiny, four weeks early, my smallest baby yet…but perfect pink and smooth skin. Dark brown hair and deep dark eyes, the image of me. There was no hint of the challenges they would face, and our dreams remained intact.
As they grew and the small differences between Molly’s development and my oldest child’s started becoming prominent. She was frighteningly skinny, and she was not talking…at all. Then she was, but still so few words. We fought it, but eventually gave in to realize there was something different and we had to deal with it. It was our first, and we thought last, foray into the world of special needs. Speech Therapy, Occupational Therapy, Nutritionists. Our head was spinning. Today we face a future of a mild form of autism for her. It will affect her future, no matter how much therapy we do now. She will face challenges unique to her, and will struggle to join her world with ours. We will help her with this…but it’s not an easy road.
Kennedy’s first symptoms appeared at a young age, but we easily dismissed them. She had torticollis, but managed to overcome it when she started belly time and with some exercises with us. After that, we thought we were in the clear. Then the ‘airplane’ reflex in her arms persisted…and so we began therapy with her. But she wasn’t done there. She started coughing in February, continued for two months straight with intermittent fevers. We finally ended up with a diagnosis of CF, and then were referred to a neurologist because of her severe hypotonia. We’ve also detected a leg-length discrepancy. Her left side is also weaker than her right. She has been in the hospital seeing more specialists and having more tests then I ever thought my children would face.
So now I struggle with redefining perfect futures for my children. Do I think their limitations will restrict them in the long run? Maybe. Sometimes. I know that with determination they can overcome anything…but I have to face that none of these goals will come without bigger struggles just to attain ‘normal’, much less get beyond. That’s the part that pains me. Knowing that their struggles are greater. That their search is for ‘normal’ first, then beyond.
I will still have dreams for my children. I still believe that they each have the fire to achieve whatever they dream. But I’ve redefined perfect…and dream solely of them being happy, strong, patient, and kind…and hope that I can give them those important virtues.
by Sarah | Nov 19, 2010 | All About Me, Random
My brain is totally fried, so welcome to random bits of thoughts & feelings…
* On Monday I went to dinner with my good friend from high school. I always LOVE having dinner with her – the conversation is ALWAYS good, the food is always good, the company is always comfortable. This Monday wasn’t so comfortable and it’s all my fault. I wasn’t feeling well, but was SO desperate to get out that I went out anyway. I only had five bites of my DELICIOUS dinner b/c I had a stomach bug and kept getting nauseous. But, we still had a good conversation.
* On Tuesday the sick hit even harder. My entire day was spent on the couch. Dog at my side, Angel climbing all over me.
* Oh yeah, did I mention we’re dog-sitting my parents dog right now? It’s added a certain level of chaos – even though she is a VERY good dog. Amazing how just one more small body in this tiny house turns everything on its head.
* On Wednesday I was SO lucky to be a part of the AMAZING event that the lovely Queen of Free set up for us Indy Bloggers that was sponsored by non other than Verizon Wireless. That means that through the holiday’s I’m sporting a gorgeous little buddy that goes by the name of Droid 2. It really is a beautiful thing that you’ll be hearing more about.
* Have I mentioned that Indy has a network of some of the most awesome bloggers on the planet? In the past month I’ve been privileged to go to two separate blogger parties with some of these incredible bloggers…and every time I see them I’m reminded how lucky I am to be in such excellent company in such a great part of the country. Where all the bloggers really reach out and get together on a semi-regular basis…and a good time is ALWAYS had by all. Whether a small get-together or a big party.
* After I made Emily’s gloves, the Queen of Free ordered a pair (pictured above). I threatened to keep this pair…I loved them so. BUT, on that note…thanks to Emily and Cherie (and a few others) ‘gentle’ nudging I’m hoping to open an Etsy shop after the turn of the year. In the mean time my plate is full with 9 orders for gloves that I need to get done before Christmas! My fingers will be very busy – and need a holiday break of their own 🙂
* In all the chaos, my Christmas pre-baking has taken a back seat. Hoping to get back on it next week.
* Speaking of which, I get to meet HER next week. I’m totally a-quiver in excitement. She is awesomeness wrapped in incredibleness. We shall share coffee and hopefully I will be able to maintain sparkling conversation.
* I’ve been working on a new layout for my blog. Hope to reveal it soon, but I need to do some organizing first…P.S. There will be Ad Space – email me if you’re interested in a block (sarah.cass.rp(at)gmail(dot)com)
* I am purposely avoiding the bad-news topic. If you missed it read it HERE and then HERE. Thank you all for your kind words here and on twitter. First appt is end of December & we’ll have more to talk about then.
* I need business cards. For that I need an official business name (for the etsy shop – preferably tied into my current Redefining Perfect brand). Suggestions?
by Sarah | Nov 18, 2010 | All About Denver, Crap, Cystic Fibrosis
Yesterday I posted about it. About the nerves I’d be living through today. About how our ‘perfect’ boy was so perfect that he faded into the background in the complication of our girls chaotic needs and schedules.
Until today when he got his sweat test done.
The test went smooth, he sweat like a champ. She told me the results would be faxed over to my Doc’s at which point I stopped and raised my eyebrows in surprise. I asked why we wouldn’t have the call back number because our ped’s office closes at 4:30 (when the results are released).
The tech, who remembered us thanks to Angel’s seven sweat tests, said that when an outside doc confirms there is no phone call…it’s special to the pulmonology department. But, also because she knew us, she did us a favor…she put a note on to put his results into the system because she knew I’d worry after Angel.
We came home and the rest of the day I was pretty okay. Just a little anxious, but overall not bad.
Then Brandon walked in the door after school. 40 minutes before it was okay to call for the results.
The minute he walked in the door my heart twisted, leaping into my throat, pounding, shuddering.
I had forty minutes to wait.
Forty. Long. Minutes.
But I already knew.
But I tried to cling to hope.
Promptly at 4:30 I dialed the number. I entered his patient number. I prayed. I hoped.
“Please call our office at…”
I burst into tears.
I know that system well. If your results are negative, they say NEGATIVE. They don’t tell you to call.
After several minutes of panic I called the pediatricians office and in HUGE relief someone answered. I asked if they’d received the fax. The nurse got on the line, telling me that my ped was out of the office until Monday….BUT, since we’d already been through it with Angel, she told me the basic results.
On the CF scale, for sweat chloride levels, the “negative” numbers are 0-39PPM.
Brandon’s levels read at 42.
Low…but in the positive range.
Our regular pediatricians partner called me to fill me in further.
They aren’t calling it CF – because they can’t. With numbers that low we have to re-run the test (much to Brandon’s disappointment, the electrical current really bothered/stung him).
But we’re getting an appointment with Angel’s Pulmonologist.
There will be more tests.
Nothing is officially official.
But ‘Redefining Perfect’ just got even more complicated.
by Sarah | Nov 17, 2010 | All About Denver
He was the center of my world.
When he was born it was just the two of us against the world. A single mom and her beautiful, cheerful, perfect little boy.
He did everything he was supposed to…when he was supposed to. Goals were met in perfect ‘according to the books’ timing. In an eerie fashion, he followed the clothing sizes exactly…he was in 0-3 mo clothes until he was 4 months old, and then until 7 months for the 4-6, etc and so on.
He was rarely sick. The only problem we had with him was his BM’s….but that self-corrected at the age of 3 and so potty training was complete.
Then Archie came along and became the Daddy. After a period of some rough adjustment typical to most blended families, everything started to smooth out. Our family unit was settled into a nice routine.
Archie & I tried to have a child for a year to no avail. So we accepted that Brandon would be our one & only child. We were good with that. We were happy with that.
SURPRISE!
I was pregnant. Riley was added to the mix. And she started having troubles, and started to slip away. And then…
SURPRISE (Again)!!!
I was VERY pregnant, six months along with Angel. And she was added to the mix, and within a year HER issues grew and became severe and intense.
Somehow the ‘perfection’ was lost behind the struggles. Coasting along under our radar. Good grades, quiet, stuck in the background. relegated to the ‘neurotypical’ ‘doesn’t need as much of our help’.
I’m not proud of it, but it’s true.
Sometimes I wonder just how much he hates us for the place he’d ended up in our family. From being the center of my universe to the background.
In the past six months we’ve been working on this more. Brandon shares my love of photography, so we share that. We’ve cheered on his Cross Country, his Boy Scouts accomplishments (he’s a patrol leader now!), and his grades (straight A’s!! WOOHOO)…
Tomorrow he goes in for something that’s gone by the wayside for 3.5 years.
When Angel was diagnosed w/ CF it was recommended that all of our kids get tested. We immediately got Riley in and she was cleared with flying colors…but as always Brandon went by the wayside. Getting him out of school was just such a hassle…and since he had a different biological father it didn’t seem as important.
Until he came down with his 3rd case of walking pneumonia in 3 years, not to mention the bronchitis he had a couple years ago…and the fact that his asthma is pretty darn bad…and remembering that 3 year span after he was born with the BM issues (yup, when/if he reads this he will strangle me)…
It suddenly hit me that we never tested him. And it became imperative that we DO test him.
Luck was on my side since they had an opening this week. I don’t have to worry for ages. By this time tomorrow I’ll know.
If we have 2 CF babies.
If my casual dismissal was too much. His regularity made me expect him to be fine, perfect as always.
So for now I worry. I try not to blame myself without just cause. By this time tomorrow it may be a different story…
No matter what the outcome, he will not be the forgotten any longer. I just hope it’s not too late.
To this day there are times when my Mom says, “I wish I had let you see more how much we struggled.” Money-wise she says we struggled. Money was tight, times were hard.
