On my way back up

My last post was a bit negative, but honest.  And above all, I try to be honest here when I write...otherwise what's the point?  The reason I chose to write that post is basically because I know that there are others out there feeling the same way...and there's nothing I hate more than reading a blog (especially a special needs blog) that's all "sunshine and rainbows"...because that is simply not reality.

I truly appreciated ALL of your comments.  Every last one of them.  Thank you so much for reading and commenting...it really makes my day.  I especially liked Sarah's comment "It doesn't get easier or harder. It just gets different."  How true.

Since that post I think the rollercoaster has started to go up again...just check out this video of Ben walking up the stairs with his canes...totally independently!





Isn't he adorable in his train conductor costume?  And isn't Daniel a typical almost-4-year old trying to get in the shot?

So yep...here we go...back up to the top of that rollercoaster!

Who said this would get easier?

I thought this CP-thing was supposed to get easier?  Because lately it's been feeling a whole lot harder.  Last year, Ben was almost 3 and I thought it was hard having an-almost-3-year-old who can't walk.  That was a walk in the park compared to having an almost-4-year-old who can't walk and is starting to understand how it affects his life.

It breaks my heart to see him holding back and watching all the other kids run circles around him.  And I think it's starting to break his heart too.

Last year, he was doing so well with his walker, that I really thought that by now, he'd be using it like crazy and maybe even starting to use forearm crutches to get around...and maybe-just-maybe taking those first independent steps.

But nope.  Spasticity totally sucks and Ben struggles more this year than last year.  Often choosing a stroller or wagon over his walker. 

Last year, I had two happy little boys who really had no idea that Ben was any different.  This year, I take one little boy to soccer while the other one asks me why he doesn't have soccer cleats.

Last year, no one really noticed that I had an almost-3-year-old who crawled to get around.  This year I feel their stares and unanswered questions.

So yeah...I'm feeling the struggle a bit more lately.  I was doing so well all last winter...accepting this CP-thing.  Not crying all the time.  Actually feeling a little joyful on occasion.  I thought I was on the path to "this CP-thing isn't so bad"...but instead I feel like I'm on a detour that has somehow brought me back to those days just after diagnosis.  I'm having lots of thoughts that I thought I was done thinking.  You know the ones.   Things like "why us?"  And lots of others along that line.

I guess when people describe our special needs world as a ROLLERCOASTER, they hit the nail on the head, eh?  Now I'm just wondering when I start climbing upwards again...

Dear Daniel

My dear Daniel;

I don't write about you much here on this blog, but that does not mean that I love you any less than I love your brother.  You are kind and sweet and so full of personality. 

You and I have a very special bond.  I think back to those days when I was the only one who could feed you as you struggled through every feeding...

You are my thinker.  My builder.  My little architect.  I love watching you as you play with your legos and blocks....not even knowing that I'm there....you are that engrossed in what you are doing.

And when you smile, the whole world smiles with you.  You have the best giggle and I love it when I tickle you just right and I am rewarded with that sound.

There is something about how you reach up and hold my hand when we're walking together that makes my heart do a cartwheel...I can't describe how much I love you in that moment.

Never change. 

Love,

Mommy



Playgrounds make me emotional

There I said it.  Playgrounds make me emotional.  And you know what?  They are everywhere.  Taking your kid to the playground is pretty much at the top of the "this is what normal parents do" list.  There is a playground just down the street from our house.  We drive by it almost every single day.  But we never take our kids there.  Never.  And every time we drive by it with the kids in tow, one of them will almost always say "I want to go to THAT playground Mommy".  And I just say "someday sweetie".

You see...when you have a physically-challenged child, playgrounds are a completely different experience.  No "sitting on the bench and chatting with the other moms" for me.  Nope.  I'm either helping Ben "climb" or catching Ben at the bottom or I'm on the friggin' thing with him.  And if there are a lot of other kids there, well, we usually hang back and watch or just decide to go home and try another time.

So we drive around neighbourhoods and find playgrounds that work for Ben.  And we've found a few.  Playgrounds with lots of steps and not so many ladders...because Ben can climb steps.  Playgrounds with just one big play structure instead of many small ones so I can keep an eye on both Ben and Daniel.  And most importantly, playgrounds that aren't very busy.  Because bigger kids seem even bigger when your main method of transportation is crawling.  And Ben gets easily intimidated by bigger kids.

So yeah.  Playgrounds make me emotional.  They make me sad, angry, and frustrated on occasion.  But sometimes, they make me happy...like when we went to the playground with "Sarah", Ben's CE friend.  And it totally worked for THEM.

Father's Day Paintings

I absolutely LOVE the paintings that Janet Harrold at Painting for Hailey has done for me in the past.  The first painting that she did for me now hangs in my family room...you can read the post about it here.  Because I loved that one so much, I had her do 2 more paintings for me that I could give to the boys' grandparents as Christmas gifts.  I blogged about them here and here.

After our family vacation to Florida in May, I emailed Janet right away to see if she could do 2 more paintings for me...for my husband for Father's Day.  It was a quick turnaround but she did it and here they are!  I do have to say that the pictures of the paintings don't really do them justice....the colours are so much more vibrant in person.

Ben walking with Daddy at the beach

Daniel - in his own little world

As usual, Janet has placed a CP awareness ribbon in each painting...see if you can find them!

And if you would like a painting of your own child, Janet would love to do it for you...all proceeds go towards her grand-daughter's Conductive Education Fund.

Glasses!

The boys got their new glasses today!  Mommy is a little torn on the whole thing...they are so adorable, but I really wish we didn't have to deal with glasses.  Oh well...in the grand scheme of things, glasses are really no big deal.

Check out how cute they are!



The only way to get one of the 2 of them, was to get them to do funny-faces.

Daniel - who obviously must not have been seeing very well...his prescription is STRONG!

Ben - I couldn't get a good one of him looking directly at me.



Happy (Belated) Canada Day!

Happy Canada Day Everyone...I'm one day late, but we were just so busy having such a great time that there was simply no time to blog about it.

We are in Ontario visiting my husband's family for a week.  We went to a Canada Day Parade in the morning.  Here are the boys with their Canada shirts and flags!

We even managed to get a family photo of all four of us!

After the parade, we went down to the lake for an hour of "throwing stones in the lake"...a favourite activity.  And then had hotdogs, sausages and fries from a local take-out.  YUM!

After big afternoon naps, we went back into town to check out all the antique cars on Main St and then down to the lake front to wait for the fireworks to start.  Here are all four of us waiting:



It was actually the first time the boys saw fireworks and they LOVED them!  Absolutely loved them.  Then it was time to go back to Grandma's house for bed.

We had such a fantastic family day!