Re-Styling Weekend

Victoria Day long weekend....the kick off to camping in our great country.
Which is crazy because it is ALWAYS  somewhat cold and wet including SNOW over this May long weekend, but anyway.....

...it's a restyling, painting, laughing, kid's neglected, birthday boy turning 5yrs kinda weekend here!

Poor R was very sick this past week with a double ear infection, eye infection and Strep. He really was feeling crummy as he informed me, "I'm a wreck." and sat snuggled on my lap, in his jammies, with goose bumps on his little legs, a quilt, a 39.5 degree (103.1 F) fever while we waited at the Doctor's office. Heart wrenching....even though I loved all the cuddles.

Poor Bup.
"I'm a wreck."

Besides being sick and feeling low, our little man had his birthday party cancelled! It's "no fair" being sick when one has been counting down for months (literally!) to turn 5!  Bup did wake up to helium balloons in his room, family gifts, and  a pancake birthday breakfast.  Of course, there will be a rescheduled party date, but still.......

So, since there was no camping and no partying and my favorite husband is still at work.... we painted....and painted.  Our brown  house is now blue. I love it yet wonder if it's too blue? Too hospital room? Too baby boy room? But the blue looks lovely against all the white trim. It's so fresh! So bright! So happy! I love it regardless that our color choice may be going against the trends a bit. No more dull, depressing milk chocolate brown for us!

This big job was made fun by a new friend, Miss K, who put on her painting duds, deserted her two sweet boys and husband, to spend it here with a roller in hand. What a gem! There was laughing and talking and talking and painting and I appreciate not only the work she did for us, but the friendship and adult conversation! Every momma loves a good two day chat with an adult!

All has not been put back in it's place, but it's fun to restyle the house and shop from within it as well. The fireplace mantle is complete...I think?...for now?....the ugly brass has to go, but yes, it is back together...with blue!

Mantle restyled...new paint, accessories from home. Each piece has a special memory. The painting is a Fred Peters and was given to me by my favorite husband one Christmas and it is of the beach we visited when dating and where he first told me he loves me.

Now, back to the rest of the house!

Diagnosis

Shall I say more?
My little cuties are keeping me in fast forward these days...and sometimes, like now when it's much, much too late at night,....I just want to crash into bed...alone, without a 6 yr old or 4yr old's feet pushing me to the far edge and leaving toe sized bruises on my legs.

Wouldn't it be lovely to wake up in the morning to "Good Morning Sweetie" instead of "Can I play on your IPhone?" ~ Yes, my favorite husband has been at work since April 25th and Bup is an iphone addict!

The momma above in her one shoe? Reminds me of watching W ride his bike home from school today in one Croc and one black Nike sock, the legs zipped off his pants and his Darth Vader pyjama top as a t-shirt. We're all about fashion in this house!

How in the world were you watching him ride his bike home, you ask? Well, cause it's Wheel Wednesday and I wasn't about to let my 6yr old bike to school alone ( there is no bike over 2 ft tall in our garage plus Bup is ill with Strep).....soooooo.....like any good helicopter, bubble mom I drove beside W so that he could ride the 1km to school. I rock!

And now, rather than dazzle you with more heroic parenting tales, I shall retire to a king size bed which no doubt has a 6yr old sprawled sideways across it.

Good night!:)

TSC Family Symposium

It's here!
The Alberta TSC Family Symposium. 
I am so excited!!!!
I am so nervous....and emotional.  (Wacko...I knoooow.)
If only I wasn't going alone...with the boys....*sigh*....Oh well....


But HEY!!! 
Dr. Thiele!!!
Other TSC families!!!!
What more could a girl ask for?!

Hola Cabola!

Ahhhhh.....the sweet, sweet sun. Mr. Golden Sun I love the freckles you place on my W's nose, the farmer tan you gave R, the way you highlight B's little haired head, and how you leave a little bit of your gold on me too!

Cuban Golden Sun is even better when it comes with sand between my toes and a Pina Colada in my hand. Ahhh.....

Friends, I shall give you a few pics of our trip while I go attend to laundry, put boys to bed and prepare for the real world which invades tomorrow.

And as Bup would say, "Hola-Cabola!"

My Blue Eyed Bup. Long sleeves for maximum protection.

Happy, goofy boys. A blessing when it takes place and always deserves to be captured.

Oh! The beautiful waters off the Varedero Coast.

Sunny W.

See boys? Auntie A and I always hung spoons from our noses and it drove Grandpa G bonkers!

Crack me up! We truly are a special family!

Handsome Hubs...all rosy glow in his happy vacation shirt purchased on our honeymoon....a few moons ago.

ADHD Edcuation

Grade 1.

Regular school.

One which we chose because of the Principal's affinity to care for children with extra needs. It was the last one on our list, but the Resource Leader (RL) and Principal surprised me. The accommodations with in the school include:

• Break Out Rooms - for body or mental breaks.
• re bounder trampolines
• yoga
• some kiddos keep a little lego at his/her desk for a quiet fidget/manipulative
• afternoon snack & physical break
• etc, etc.

Well....the principal retired. 

Strike 1.

The RL is....administratively overloaded? Detached? 

Strike 2.

W struggles with a couple of issues at school. 

Attention....not just because of the ADHD but because he is bright, bright, bright...and therefore bored, bored, bored.  Which gets him into trouble because then he doesn't want to make any effort as it's "boring." 

As I volunteer twice a week, I am able to witness first hand W's classroom behavior, interest, etc.

So, naturally, after speaking with his teacher (whom I adore! She really makes an effort to understand W and accommodate him), my next step was a meeting with the RL. 

After hearing my concerns.....

....she recommended he transfer to a different school!  " I don't like to send kids away, but...."

The Science School as his interests are science and humanities based aaaaaaaaaaaand 

..."you have to pick your battles. Is it really important that printing/handwriting being strong? We have kids use electronic devices rather than printing" 

Needless to say, I was stunned. Silent. Cause sometimes I need to process my answers so that they are appropriate and not right off the cuff/heart.

Now let me explain we have not been in the RL's office weekly or even monthly.

W's Key Teacher has been fantastic. 

But W has ADHD and I needed help in how to engage and interest W. This is an ADHD challenge not a subject challenge.

Second meeting of the year and her hands are washed of W and it's recommended he go elsewhere next year?

Iiii-Yiii-Yiiii!!!

Sooooo...........I fired off a long, heart-felt, factual based email to the RL, Principle, and Key Teacher explaining what ADHD is, does, and how school will always have challenges for W and that as his mom I will ALWAYS advocate for him and by the way....this, this, this and this is on his IPP and it is not being met, so please do it now.

We'll see what comes of that....so until then.....GRRRRR! Momma Bear is here!

TSC Tuesday - Red, red Facial Angiofibromas

Bups sweet face is marked with the butterfly markings of facial angiofibromas. One of the many markers of TSC.

It's been noticed by myself and his teachers that during or after seizure activity, these tumors are so prominent. They are red, and even more raised.
Also, they seem to be spreading.

When R is sick, feverish, under the weather...well, there's no hiding these little bumps at all. They just jump right out!

Any TSC mom's find the same? That during and immediately after a seizure the FAs are very obvious?

R's poor little face. Makes me sad and want to kiss him and scrub him and lotion those sweet cheeks until they disappear.

 If only it was that easy....

Easter Blessings

Easter....a celebration of spring, bunnies, chocolate and new beginnings. Life. That's what it means to me.

Our family has many blessings to be grateful for this Easter. Funny how "good health" is the first that comes to mind. Even though we have health concerns and challenges all the time with TSC and ADHD resting in our home, I still am grateful.  I guess it's the little things. Even this Internet and this blog.
It has allowed me to connect with people I otherwise wouldn't. Far away friends. New friends. People that life has versed with experience and compassion as they too have children or friends or family with similar experiences.
Laughter. Can there be a bigger blessing than laughter? It lightens our load...if only for a minute.
Each other. Family. Friends we have chose as family.
And oh yes. Chocolate! And sometimes wine!

Today was a quiet day for RWB. After an Egg hunt and listening to Bup who was the first up begging to go outside and search for eggs, shocked that there were tiny paper ones left on the stairs, finding an egg on the steps, and chatting away to himself. After the search and devouring of the few treats we were off for a restaurant served breakfast. Now that's a treat!

Then the Hubs was off to work. A 10 hr drive and a 5 day shift. A short stay.( One day I'll blog about being a Married Single Parent. One day.....)

Bup is under the weather with a fever, runny nose, bright bright facial angiofibromas (they flare when he's sick or seizing)  and unfortunately a wiggly hand seizure this morning. But he's happy (enough) and slept and slept the day away. Tired. Sick and seizurey...always equals tire.

Bup catching a rest in the sun.

Then there's W. Somewhat content to stay home with me, watch movies, play a little wii (they finally earned it back!) and just hang out.

W having a rest with Dad.

So, as this Easter night comes to a close, I am grateful despite all the "little things" that are abound in our life because that's just the way it is. There's always stuff and today I'm just grateful for life, this journey, that is filled with stuff.

And....I hope you are too.