Monday, May 26, 2008

Truth! You Can't Handle the Truth!?

Does anyone catch the movie reference here – if so, let me know. I can see the scene between Tom Cruise and Jack Nicholson but can’t remember the movie. I’m not a big Tom Cruise fan – he’s just too much – too pretty, too excited and too weird. However, I remember the line from this movie and decided to use it for this post because it seemed appropriate.

How many of us CAN handle the truth? I would like to think I could but within the last year and a half, I don’t know that I could have and apparently so have other people. I don’t want to imply that anyone has lied to me but instead I would say they have withheld information. I still haven’t decided whether this is a good thing or not.

First example – the car accident. This was the beginning. One of the nurses asked me how they could contact Jim – I told her and she asked if it was ok to tell him that I “just” had a broken ankle so he wouldn’t panic. I said yes as I figured one family car accident in a day was enough. Jim’s reaction (understandably) was to take his sweet old time to get to the hospital. This just about drove me crazy – so I kind of wish that she would have shared a bit more of the truth with him.

I also remember lying in the emergency room with people busy around me and watching a police officer quietly lead Jim away. I had a good idea of what they were talking about. The police officer told Jim about the fatalities and suggested that he not tell me and keep TV and newspapers away from me for a while. I already knew about this – after all, I was there.

The next person to get in on the action was my orthopedic surgeon who proceeded to release information to me a little bit at a time over the next year. He told me I would walk again and I believed that I would be ok – back to my old self in a couple months. As time went on, this is what I learned to be the truth:

Ø I would never be “ok” again. I would walk, but there would be two more surgeries, months of physio and pain with every step. I would limp for the rest of my life. I will need more surgeries. I will get arthritis (I already have).
Ø My injuries were so bad that they almost amputated my foot.
Ø I would never do many of the things I enjoy again – hiking, walking my dog, curling, golf, tennis, canoeing, strolling through foreign cites for hours, dancing, maybe my job, etc.
Ø I would rely on others for help for most things – going to the bathroom, taking a shower, going grocery shopping, cleaning my house, caring for my son, etc.

The list goes on but I’m sure you get the idea. I know I’m dragging on here, but I do have a point. I’m guessing that not knowing the whole truth immediately was a good thing in a way. If someone would have told me all of the above and that I would never run and jump with my son, but don’t worry about that because your son will have cerebral palsy and will have to struggle for everything – I don’t know what I would’ve said, done or felt. Maybe I wouldn’t have wanted to work so hard with my own physio and recovery. Maybe I would have had other dark thoughts. I just don’t know.

As for Bennett, it seems people hold back the truth here too. A few weeks ago we brought him to the hospital as he was miserable and had a fever. I was extra concerned because of the recent MRI results that showed hydrocephalus. I shared this with the doctor on call. Bennett had a chest xray done and the doctor came back and told us everything was fine and that he had an ear infection and would prescribe antibiotics. We were relieved and went home. Bennett had his regular doctor’s appointment a couple of weeks later. The doctor said he had received paper work from the hospital that indicated that he had been treated for pneumonia! I said “No, he had an ear infection”. The doctor said “No, it says here ‘the early stages of viral pneumonia’ – there’s nothing about an ear infection. It doesn’t matter because the antibiotics used are the same.”

So, once again someone figured that I “couldn’t handle the truth” and that “ear infection” would be better than “pneumonia”.

What’s my point, you ask? Well it’s this. I guess that in some ways it can be good to not share the whole truth with someone. However, it has all left me so suspicious and paranoid that people aren’t telling me things – especially when it comes to Bennett. I’m so worried that something else will come out of left field and knock the wind out of me – something that somebody knew.

So, what do you all think? Is it always better to know the truth, the whole truth and nothing but the truth? Do you want the truth – can you handle it? I’d love to hear any opinions – you can vote in the poll too.

Sunday, May 25, 2008

This Just In....

After almost 3 months of physio and lots of work and a lot of singing (especially "Row, Row, Row Your Boat") I am very excited to announce that we have CRAWLING!!!!

Our physiotherapist had doubts and we had doubts that this would happen. Crawling can be very difficult for kids with hemiplegia and many will go straight to walking. I thought Bennett might do this but something started to click on Thursday night and by Friday night we had our first official crawl. There was lots of cheering and lots of tears on my part. Grandma and Grandpa were here to see it and Mummu and Poppa just missed it.

Life around our house will have to change now. Finally after 17 months of having a baby we actually have to really babyproof. The first step was putting up the gate. Jim wanted me to post a picture just to reassure the grandparents (ps. We also have closet handles).

Go Bennett!

Green Beans

Our boy loves green beans. However, he doesn't like them cut up as you can see. Weird kid.

Warning: The following video may ruin your appetite!

Sunday, May 18, 2008

Breaking News....Bennett Update

Since this blog is supposed to detail Bennett’s progress, I guess it’s time to provide an update. So here you go.

Crawling: Not too much progress here yet. He gets on all fours and rocks like a wild man and has kind of jumped forward a couple of times but still nothing that can be classified as crawling. You can see that he wants to move but just can’t put it all together yet. The physio says this is still a good thing as he’s building strength and confidence. However, for a guy that can’t crawl or walk he manages to get around quite a bit. He’ll roll and sit up, the go on all fours and sit up, push himself backwards and sit up and somehow, all this work gets him across a room.

Pulling Up: This is something we have been working on and now we finally have progress. He can pull himself to his knees on the couch, in the crib, in the tub, etc. quite easily. Once there, he’s confident enough to let go and bounce and balance on his knees. It also looks like (as you can see in the video) he wants to stand.

Walking: Not anywhere close, although he did take a few steps in a walker with his physiotherapist a couple weeks ago.

Language: Bennett had his first appointment with a speech language pathologist. She has evaluated him and determined that his receptive language is where it should be but his expressive is behind. We have lots of sounds but nothing close to words yet. He points at a lot of things and understands most of what we say but no words. I want to hear that little voice so badly it hurts.

Fine Motor Skills: This is another area we are working on. We have been putting a sock on his left hand throughout the day when we eat and for some playtime. He has made progress with his right hand. He feeds himself breakfast quite easily and has used a spoon a little bit. We’re still working on this though with his left.

We have also been getting him to pick up small puffs with each hand and getting him to drop them into a small spice jar. This has been going well. The occupational therapist uses a shape sorter toy every time we go. This is not something Bennett has ever been too interested in. However, if we need to do this, we will. So, we’ve been practicing and he’s made great strides in just a couple days. He can put the shapes in as long as we point out the opening. Hopefully the OT will be impressed.

The next thing is stacking blocks. Bennett loves to knock them down but shows no interest in building. That will be our next project. You know, I wonder if there are “normal” kids out there who don’t like stacking blocks and no one ever cares. However, because a textbook says they should be stacking blocks, Bennett will have to do it whether he likes it or not. That’s one of the downfalls of having people evaluate every little thing I guess.

Sleeping: I’m proud to report that Bennett now naps and sleeps in his crib. He still comes into bed with mommy and daddy sometimes, but for the most part sleeps on his own.

Breaking News: Bennett can correctly identify his toes, belly, nose, mouth and head! It’s funny how he anticipates when I’m going to ask and immediately points to his nose. With his belly, he always lifts his shirt first and points – very cute!

Happy Birthday Daddy!

Wow, it sure seems like I've been sending out a lot of birthday wishes recently! This one though is really special because it's for my daddy - the best daddy in the whole world! He's the guy who puts me to bed every night, changes all my diapers on weekends, gives me great baths and lets me sleep snuggled into his back on nights that I don't want to sleep in my crib.

Happy Birthday Daddy!

Saturday, May 17, 2008

Keeping it Real

This is a phrase I don’t think I have ever used in real life and I don’t plan to start (Hilary – if you’re reading this, you’ll be relieved I’m sure). However, it seemed appropriate for this post which explains the results of Bennett’s MRI.

We got the results a couple of weeks ago and like I mentioned in a previous post it’s hard to wrap your head and heart around the words “your son has brain damage”. Even though I knew that was likely, I was still hoping that the scan might be normal. Well, it wasn’t. The scan showed some spots of damage on the right side of the brain – there was one small spot on the left but the doctor figured that it was inconsequential. The damage was consistent with him being deprived of oxygen at some point. However, these results were a bit strange. Any readers that have hemiplegia or children with hemiplegia will notice the discrepancy immediately. Bennett is a right hemi. This means that the damage should be on the left side of his brain. I didn’t realize this until after I got off the phone with the doctor and read the report myself. So I called her back and asked for a possible explanation. She didn’t have one and said that she had forgotten that Bennett was a right hemi and was just assuming he was a left hemi. The report is now being sent to Sick Kids for further interpretation and to see if they have an explanation.

One of my biggest fears about getting the MRI is that they would find something else wrong and I would end up longing for the “good ole days” when Bennett “just” had cerebral palsy. Well, once again, my fears have been realized. The scan also showed mild to moderate hydrocephalus. This condition is usually treated with a shunt. When I asked the doctor why she wasn’t too worried about this she explained that his head size is well within the normal range and he shows no signs or symptoms of increased pressure to the brain. She said we will keep an eye on it and that it may resolve itself and that it would be a good idea to avoid brain surgery if possible. Despite her words, I’m still worried sick about this and freak out every time Bennett even touches his head.

So, why did I title this post “keeping it real”? Well, because, essentially the brain scan doesn’t mean much. Bennett still has cerebral palsy and he still needs therapy. The MRI does not predict function and it does not show which parts of the brain have already taken over from damaged areas. He’s still the same little boy that likes to lift up his shirt and point to his belly, give wet kisses, flip through book after book, play with his trucks and stuff his face with goldfish.

As much as I know that he’s the same little boy he’s always been I would be lying to say that I don’t look at him differently. I find myself looking with amazement at his gorgeous, perfect little face and wonder how there could possibly be damage there. How could this have happened?!

My questions are pointless I know. Bennett is who he is and he is a wonderful little boy and so loved.

Tuesday, May 13, 2008

Some Mothers Get Babies With Something More...

The following is a long piece, but if can make your way through - it's well worth it. Jim and I have been attending a parents group once a week. It's for parents who have children with neurological disorders. One of the mothers brought this in to share with the group - and now I'm sharing it with you.

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the colour of the walls in the small suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of the devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echocardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbour, a friend, a stranger that I pass in the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re the woman who wanted ten fingers and ten toes, and got something more.

You’re a wonder.

Lori Borgman is a newspaper columnist and author.

Sunday, May 11, 2008

Happy Mother's Day

This post is dedicated to our mothers - my mother Suzanne (better known as Mikey) and Aline, Jim's mother.

We want to say thank you to these two great women. Jim and I are very lucky to have such wonderful mothers who dedicated much of their lives to raising us - and if I do say so myself, I think they both did a pretty good job!

Of course we both have many memories of our mothers. Some of my favourites involve our family camping trips and I know that one of Jim's is his mother trudging through the snow carrying his hockey bag for him as he made his way to hockey practice! We also have some other memories like my mother kneeling on top of me forcing a green bean into my mouth. Jim remembers his mother driving over him with a dual wheel truck just to beat the traffic (don't worry, this particular story is much exagerrated).

Both mothers did not have it easy early on in our childhoods - my mother lost a child and I lost a brother. But they never let difficult times affect the love and attention they showered on both of us. Neither Jim or I grew up in families with a lot of money - but we didn't have a clue - we had what we needed and that was enough.

I don't know what we would've done without our mothers over the past year and a half. We are truly lucky and we know it.

Thank you to both of our mommies!

Thursday, May 8, 2008

Constraint Therapy...

...or our version of it. Constraint therapy is something that is done quite a bit in some places to help kids with hemiplegia gain function in their affected hand. Sometimes a cast or splint is used to immobilize the normal hand so they are forced to use the affected side. Apparently they don't do that very much where we live but our occupational therapist was excited to try this modified version of it. What we do is put a sock on Bennett's left hand during mealtimes (part of it) and during some of our playtime. We've been doing this for a couple of weeks now and we've noticed a definite improvement. He now eats his entire breakfast with his right hand and can pick up cheerios quite easily. We've even seen him pick up food with his right hand when he didn't have the sock on the left!

I was worried that he would get frustrated but he hasn't at all. He thinks it's a great game and will reach up with his hand to help me put the sock on.

I apologize for my long absence and the lack of updates. We have been busy around here with lots of therapy appointments. Bennett also had his first ear infection. That was a bit scary as the kid has never really been sick. We have received the initial results from the MRI and I plan to give an update about that soon - I'm still just trying to wrap my head (and heart) around it all.

Enjoy the videos!

Saturday, May 3, 2008

Happy Birthday Again!'s a busy many ladies, so many birthdays! Happy Birthday to Cousin Lucy! I hope you have a great day. Oh yeah...what are you having for supper?

Happy Birthday Wishes!!


I hope you have a wonderful day. You are my favourite hairdresser/safety consultant aunt - I'm so glad you cut my hair for me! Can you imagine the alternative? (Most likely Mommy or Mummu - either way, the results would not be good). See you tonight at supper for hugs and kisses!