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!

Bad blogger

Yep. I've been a very bad blogger. Looks like my last post was on June the 7th. That's horrible. We've been very busy and now that Spring/Summer is here, my evenings have gotten so full, that I've had a hard time finding time to blog. To get you caught up on all things going on with us, here's a list:

1. We're still looking into a Rhizotomy for Ben. Really looking into it. Referrals have been sent to 2 separate hospitals for more opinions. So we wait. While we wait, I research and read blogs. I've been totally addicted to this blog as Hannah just had her rhizotomy a little over a week ago.

2. Ben continues to struggle with very high muscle tone in his hamstrings and gastrox. We had botox for the hamstrings 4 weeks ago and had our 4-week post-botox appointment today with his physiatrist. The hamstrings have definitely loosened up but the gastrox are worse. For him, this makes walking with his walker very difficult so he hasn't been walking much lately. The physiatrist is still thrilled with all the progress he's making like: walking with canes, crawling up and down stairs, getting in and out of bed, and being totally potty-trained (more on this later). I think she's even more convinced that a rhizotomy is the way to go for Ben.

3. So...since his gastrox are so tight, he's in casts for the week. They wanted to do a number of weeks of casts, but I just won't do it. It's summer. And in New Brunswick, Canada summer is only about 8 weeks long (if we're lucky). So he's only getting one set. I'm struggling a bit with this decision, but I just cannot cast that boy for half the summer. Summer is the only real time that we actually play outside. Ben LOVES the beach, the pool and the sandbox...three things that don't mix with casts. So we'll hold off on more interventions until September.

4. Yep, like I said. Ben's potty-trained. I really can't believe it. Daniel potty-trained quite easily last fall but Ben was another story. And with our CP-kids we never know what is personality and what is CP. The truth is, he was never dry so we pretty much knew he was nowhere near ready...until about March. He started having dry diapers and our nanny forced the issue (meaning HUGE bribery and rewards) and now he's totally potty-trained. Of course, being potty-trained is not really any easier for us...since he needs so much help, but that's getting better everyday. He can actually walk into the bathroom with his walker, walk up to the toilet, get help from us to pull his pants and underwear down, and then stand up to pee....ahhh, the benefits of having a penis. Really, I'm still pretty amazed about all this.

5. I finally got away with Daniel for the night. For months, I've been meaning to do this. I am always going off somewhere with Ben and even though it's always for appointments, of course, Daniel doesn't realize this. So I've been wanting to get away with Daniel on our own for some time now. On Monday, I finally did. Off we went to Halifax to stay with friends for the night (who also have 2 little boys). He had so much fun and so did I. I feel somewhat guilty saying it, but hanging out with just one kid (who can walk) is just so easy. And enjoyable. We went to the playground...and I GOT TO JUST SIT ON THE BENCH AND WATCH! What a nice change! Now...I just need to figure out how to do this more often.

6. And now for the big surprise (well, it was for me anyways)...BOTH Ben AND Daniel need glasses. We saw their opthamoligist this week for our annual follow-up (due to their prematurity). We've seen her every year and there has never been an issue...so I really thought there wouldn't be this time either. Well, it turns out that Daniel is quite far-sighted and REALLY needs glasses. And Ben has astigmatism (not a shocker - since I have pretty bad astigmatism myself). So off we went to pick out glasses. Honestly, they were adorable, but I'm not looking forward to them arriving. I'm really not. I was pretty OK with Daniel getting glasses, but when she told me that Ben needed them too, it really got to me. Just one more thing for him to deal with. Ah well...the good news is that their eyes (i.e. retinas) are nice and healthy and that of course is the most important thing.

I think that should just about bring you up to date. Sorry, I've been such a bad blogger!

Hope

I've blogged alot about acceptance. But I've blogged very little about hope.

I have accepted that Ben has CP. I have accepted that he needs braces and a walker to get around...and that most of the time a walker is actually completely useless. So we checked out wheelchairs for those situations when a walker just won't cut it. And I wrote about why I was OK with a wheelchair.

I said things like "all I want for Ben is happiness and independence". I stopped talking (thinking and hoping) about independent walking.

Ben is almost 4 years old. He is nowhere near walking without a walker or canes or crutches. His hamstrings and calves are EXTREMELY tight. We have done botox and casting ad infinitum (it feels like) with good results (to start) that fade away way too quickly (like in 4 weeks...nowhere near the 3 months they hope for). The step before walking is independent standing...like I tell family members, "you try to stand when you are on your tippie toes and your knees are bent".

Ben's therapists used to say that they thought independent walking at home was a goal for him. That was before spasticity reared its ugly head. Check out this old video of Ben walking with his walker...he's just over 2 years old here. His gait is pretty much perfect...so I see why they used to think that.




Now? Well, he is on his toes always...with knees bent (if the botox has worn off) and his left foot turns in horribly. And he even scissors some. And really? I think his therapist (and I) had stopped thinking about independent walking.

Of course, that's what we continue to work towards. It's why I have Ben doing PT twice a week and doing 6 weeks (plus) of Conductive Education each year.

But to be honest, I had given up hope. I had accepted but I had no hope. I really thought that the most we could hope for would be some independent stepping that would be nowhere near functional. I kept saying how pleased I was that he can do transitions so well and that he should be able to be independent as an adult that would likely choose between forearm crutches and his wheelchair as preferred methods of mobility.

What I didn't realize was was that this was making me very sad. Because I had given up on something that I had really hoped for early on.

And then, Ben's physiatrist said the words "rhizotomy" and "Ben" in the same sentence. And a teeny tiny bit of hope crept into my heart. And took root. I started doing more research. And watching youtube videos like this one of kids walking post-rhizotomy. And talking to Ben's PTs. And that hope grew.

I talked to Ellen from Stumbo Family Story whose little girl Nina had a rhizotomy just 6 weeks ago and is already knee-walking. And that hope grew even more.

I realize that we haven't even spoken to a surgeon yet and of course, (functional) independent walking may not be in Ben's future. But all of the sudden, I have hope again. And that feels awesome.