Shriner's - Day 29 - Endings (cross-post)

Tonight I am tired.  Emotionally drained.  Excited.  Ready to go home. 

Our 50-day SDR-journey is coming to an end.  It feels a bit surreal.  Tomorrow night I will be home.  Home in my house.  I so miss my house.  Home with my husband.  And with Daniel.  I so miss seeing them everyday.

We said a lot of good-byes today.  Today was our last day with Stephanie.  She has the day off tomorrow.  We handed out Thank You gifts (little photo books that I put together to show Ben's journey here at Shriner's).  We got instructions on stretches and exercises to do at home.  And just a couple of rules (like carseats on airplanes until 6 months post-op and no activities with a lot of bumping, like horse-back riding).  Ben got gifts.  Lots of gifts.  Some that are really big and luckily found room in a suitcase. 

And now I just feel like I'm in a bit of a holding pattern until we leave tomorrow morning at 10:30. 

Ben will see Betty in the morning for another good-bye (and hopefully not too large of a gift).  And he'll have one last PT session.  Like I said, Stephanie won't be there so it'll be with Nancy.  It'll likely be an easy session of stretching and a bit of exercise on the mat.  I've already packed up his canes.

I took down all Ben's cards and notes off our walls today.  There was A LOT!  And packed them all away.  I'll keep these for little trips down memory lane as the years pass and the memories of our time here fade away.  They will fade...it's hard to believe that now. 

I often compare this journey to our NICU journey four and a half years ago.  That journey was just one week longer than this one.  Ben and Daniel spent 58 days in the NICU.  My memories of that time have faded somewhat.  I forget peoples' names and I feel bad about that.  But that's what happens.  And now, I look back at that time fondly (it's hard to believe) and kind of miss those days of just focussing on my babies.

That's what will happen here too.  Someday I'll look back and miss these days.  Miss this quality time with Ben.  Miss the excitement of all the changes in his body.  Miss these amazing people. 

And likely miss not having to cook meals or buy groceries or juggle real life with Ben's therapy.

So ends another chapter in our life.  In Ben's progress.  But as this part ends, we welcome in a new chapter.  A chapter I call "Life after SDR".  I can't wait to see what it looks like!

(But don't worry...I'll be back posting often to show Ben's progress at home.  I KNOW that we are going to have independent steps soon!)

What Ben knows (cross-post)

On the night before we head off to Montreal for 8 whole weeks, I am experiencing almost every emotion all at once. Excitement, happiness, fear, anxiety, and dread. I am beyond thrilled that this surgery is happening. I am positive that this is the right thing for Ben. But I am oh-so-nervous about all that it entails. Three days of post-operative appointments that surely won't be much fun. An up-to-8-hour surgery. Days of recovery and then weeks of rehab. Eight weeks of being away from home. Away from Clarence and Daniel.

The most amazing part of all of this (so far) has been Ben's understanding of what is going on. He's only 4-years-old, but he can pretty much explain what's going to happen to him. He understands that we are going to Montreal to see Dr. Farmer (the neurosurgeon) again and that he is going to have an operation. Dr. Farmer will make a cut in his back and cut all the "bad" nerves and leave the good ones. He knows that he has to lay on his belly for 2 whole days after the surgery. He even understands that he needs to work really hard afterwards. And then he says "I'm going to walk with no walker and no canes!". Well. We'll see about that one. I sure hope he's right!

His main focus is that he gets to spend time in the pool every day (starting on day 14 after surgery). We have a little handbook that explains the surgery along with the days leading up to it and the rehab afterwards. There are pictures all the way through it. Ben loves to look through the handbook so he can see the boy in the pool. That's all he talks about.

Luckily, there is a pool at the hotel we'll be staying at this weekend and he'll be able to swim in the days before he's admitted for surgery. Hopefully that will help with the wait after surgery until he can go in the pool.

So yeah. We're ready for this. Here we go. (I just need to finish packing first.)

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...

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.

Yesterday, I cried. Twice.

I had one of those days yesterday. For the most part, I am a very upbeat and positive person. Most of the time, I can be OK with this whole CP-thing. Most of the time, I can see all the positives. All the things he CAN do. And not focus on what he CAN'T do.

But sometimes, I fail at at that. Like yesterday. I gave in to all the negatives. All the CAN'TS. And I cried. Once for just a few seconds until I could get myself under control. And once last night, for a very long time. Last night I cried huge, wrenching sobs. Tears streamed down my face. My eyes got all red and puffy. And I yelled and screamed about how much I hate what CP has done to Ben. To us.

I said things and thought things that I haven't said or thought in a very long time. Why did this happen to Ben? It's so unfair. I just want him to be able to play on a playground on his own. Why does this have to be so hard? Why can't I have twin boys that run, jump and climb together? I fucking hate what CP has done to our family. I am so sick of my whole life revolving around spasticity. And on, and on, and on.

It was awful. A really horrible night.

But today is a new day. And I am back to being me. The happy, positive me. And of course, I can never feel that horrible when I'm watching my Ben play. He's an amazing boy who is making fantastic progress.

Family vacation

As I said in my last (very quick) post, we just had a WONDERFUL family holiday in Fort Myers Beach, Florida. We went to the exact same resort that we went to last year and had even more fun. It was truly the perfect holiday.

Last year, I had a bit of a rough time on this holiday... you can read about that here. But I didn't have ANY of those feelings this year. This year, I just enjoyed it. I enjoyed the kids. I enjoyed their 3-and-a-half-year-oldness. We plan to go again next year and it'll be a completely different holiday again...when they're another whole year older.

I actually met a family there. A girl named Lauren (aged 20) and her parents. Lauren has CP. And instead of being shy and not saying anything, I took the opportunity when it arose to talk to the Mom and then got to talk to Lauren and her dad as well. Lauren's CP is more involved than Ben's. Her arms and legs are all affected. She is very intelligent though (she's a sophomore in college)! It was so great to talk to this family. It was so inspiring!

So here are a few photos of our trip. We can't wait to go again next year.

Ben watching the waves

Sorry Daniel...but Mommy couldn't resist taking this one!

Daniel in the splash pool

Ben wiping the water from his eyes

Daddy and Ben

A rare family photo - on a dolphin cruise

Funny-face time!

Love this one of the boys

We had the boat to ourselves so Ben could crawl around as he liked

Daniel - What a natural!

Ben loved waving at the other boats we saw

Cuties

We had lots of fun in the pool

One last family photo - our last night there

Gypped

(Warning: Lately, most of my blog posts have been very happy and positive because let's face it, life is good. Very good. But something happened this week that caused some tears and some reflection and I started feeling pretty sorry for myself. So in an effort to be honest and share the highs AND lows of my life, I decided to share it with you.) I follow A LOT of blogs. Mostly blogs by moms of kids with CP...but I also follow a lot of blogs by moms of kids with other types of special needs. Even though the medical jargon may be different, the roller coaster of emotions that we're on is the same. I enjoy reading about Maya at Uncommon Sense. I started following this blog when I came across her very popular post called "Amsterdam International". If you haven't read this post, then you MUST DO IT RIGHT NOW. Anyways...this week Maya's mom posted some old videos of Maya as a baby. Video #2 is precious...featuring Maya's first laugh. Instead of laughing and smiling along with Maya and her parents, the tears started to flow. I don't remember the boys at that age. At all. I do have a few photos. But no videos. And I certainly don't remember at any point enjoying Ben and Daniel in that way. Doesn't that sound horrible? But it's true. I routinely describe the first year of their life as the worst year of my life. Dealing with Ben's CP diagnosis has been a walk in the park in comparison to that first year. So...I feel gypped. Totally gypped. I didn't get to give birth to ONE full-term baby. Instead, I had two babies that were born 10 weeks too early. I didn't get to take that one baby (or even two babies) home from the hospital with me. I had to leave them behind. I had to wait 57 days and nights before I got to bring them home. And when they came home, they were still on wires. I had to cut holes in any sleepers that had zippers instead of snaps for their wires to come through. I remember the first time that I successfully breastfed Daniel. Instead of feeling happy about it, I had tears streaming down my face as all I could hear was Ben screaming as they put an IV into his head. But most of all, I didn't get to enjoy my babies. Ben had colic. Daniel had SEVERE reflux. We were alone with no friends or family nearby. They came home in November with the warning to keep them at home and only take them out for doctors appointments. So we stayed home for 6 months. I didn't even dress them up in cute outfits. I was too tired. It was too much work. I just left them in whatever they were wearing (a sleeper) until it got dirty and then they got changed. I remember saying thank you to my husband for coming home from work every night. Home to an exhausted (and likely depressed) wife and at least one (Ben), if not two, screaming children. If someone had let me out to go to work, I'm not sure I would have come back. So yeah. That first year sucked. And I didn't even realize how much until I saw that video of Maya. Of her laughter. And of her parents truly enjoying her. And I wished that I'd had that.

Just a wee bit nervous

Ben's getting botox injections on Friday. In his hamstrings and gastrox (calf) muscles. Under general anesthetic. In an operating room.

And I'm nervous.

But he so needs it. We just spent the last 3 weeks in casts trying to stretch out his calf muscles and have barely gotten anywhere. We've basically managed to be able to get him back into his AFO's more comfortably...but that's about it.

So yeah, he needs the botox in his calves. And his hamstrings need it too. So that means ALOT of needles...and his physiatrist is just not willing to poke him that much if he's awake. So that means general anesthetic. Yuck.

So keep us in your thoughts on Friday...although by the time you are all up and about, it'll likely all be over with since we need to be at the hospital at 7am Atlantic time (that's one hour ahead of EST). He should get the botox at around 8:30 and be all done by no later than 9:30.

I'm just hoping that we see some real progress after this. He'll do 2 more weeks of casting afterwards to really stretch those calf muscles once the botox is doing it's work. And then we're off for another week of Conductive Education.

He's been making some real progress with independent standing so I'm really hoping that once he can more easily get his feet flat that we'll see more and more improvement in this area....and then, well, we start working on an independent step or 2...won't that be exciting?!?!

So that's what I hold on to...the gains that I hope we'll be able to make afterwards. And I try to stop thinking about that operating room. I try.

My coping mechanism

So. We're away again with the boys. We're in Halifax, Nova Scotia (just a few hours away from home). We arrived yesterday afternoon and will head back home tomorrow after lunch. Ben has his Conductive Education assessment appointment tomorrow morning. So we decided to make a little trip out of it.

We've been having a (mostly) wonderful time. We went on the Harbour Hopper tour (it's a tour of the city - 1/2 on land and 1/2 in the water) this morning. And then we spent the afternoon at Point Pleasant Park where the boys enjoyed throwing rocks in the ocean. One of their favourite pastimes lately.

I say MOSTLY wonderful because the crappy feelings keep sneaking up on me...just like in Florida. The reality of Ben's disability is so much more in my face when we're away from home. And this reality hits me when I'm not really expecting it. We're just going along and then I see Ben in his stroller while Daniel hops and jumps around and it breaks my heart.

But the point of my post is to admit something that I hate about myself. When I have these thoughts about Ben. These "poor Ben" or "poor me" thoughts, I have this awful way to make myself feel better. I think of children that I know (or know of) that are more disabled than Ben and think something along the lines of "well, at least he's not THAT disabled". I'm looking at that last sentence and I just hate to read it. I feel horrible. Is this a good way to deal with these thoughts? I have no idea. I really don't.

But it's how I deal. It's how I pick myself up and move on with the day. It's how I avoid dissolving into tears right there on the spot.

I don't even know if I should publish this post. I'm scared of what you all will think. I'm scared of your comments. Or that you may not come back here. Or that you might think that I'm referring to YOUR child. I will say that it's not usually any ONE child in particular...it's more like an odd mixture of a whole bunch of different children.

(P.S. I wrote this post about 3 days ago. I have read it every day since then trying to decide whether I should hit the "publish post" button. I'm still not sure if I should hit it, but I'm going to anyway. This blog has a few different purposes, but one of the main ones is to act as a diary for me as I deal with having a child with CP. And if this was a diary that no one read, I would publish this post. So that's what I'm doing.)