Sunday, June 27, 2010

My support system

It's interesting. From pretty much the day that Ben was first diagnosed with CP, I've been frantically looking for support. I knew I couldn't travel this new path on my own and needed all the help I could get.

My first step was reaching out for help on a great twin forum that I was very active in called Twinstuff. They have a specific forum for medical and special needs. So I posted a question about CP and got a response from Kelly from Drake and Lulu. I was really clueless about the blogging world and she clued me in. I started out reading her blog and found lots more via her blog list. I thought I was in heaven. Here was a whole world of parents of special needs kids. There was so much great information...and not just information, but real life stuff.

Then I started wanting support from people "in real life" so I tried to start a support group in my area for parents with kids with CP. It never went anywhere. I told Ben's PT's, OT and doctors about it, but of course due to privacy laws couldn't actually give me the names of the parents I was looking for. I posted my information everywhere but not one single person got in touch with me.

So I pretty much resigned myself to the fact that my "support group" would be you guys....fellow SN bloggers. I was OK with that...I mean let's face it, you guys are a fantastic group!

And then over the past few months I've had a few experiences that made me realize that my support group is more than just you guys.

One afternoon a few weeks ago, I spent the afternoon at my mom's (without the kids) and we had a great talk. And I realized something. She's experiencing this too. She's going through pretty much the EXACT same emotions as me. Ben is her grandson. And she's had to deal with having a SN grandson. I'm not sure why I hadn't realized that this was affecting her too. And you know what? This might even be harder for her to deal with than know why? Because she has to watch ME go through it! How hard must that be?

And you know who really knows how I feel? My husband. I mean he's going through this too. He's not a great communicator but once in a while we have a great chat...and we did just that just a few nights ago. And he opened up about what he finds hard about this whole thing. And it was great. It was so nice to come together and share our feelings about being a SN parent. Sometimes I feel like he's not that affected by this...but I know different now. He struggles with this too. He's just such a great Dad to our boys that I don't always see how he's struggling.

There are a few more people that I consider part of my support group such as Ben's therapists and now a few real life friends who have recently had their child diagnosed with CP. All of these people offer different things. Some offer information while others offer support simply by being part of this same club we've found ourselves in. But they're all INVALUABLE. I need all of these people. They're the reason I'm able to keep going. Keep being Ben's mom and Ben's advocate.

So what about you guys? Who's in your support group?

Monday, June 14, 2010

A much needed dose of perspective

Yeah. Sometimes we all need a little perspective. And I got a healthy does of it this weekend.

I've been in somewhat of a "poor me" state of mind lately. I haven't been too down, but I've been having a tiny little pity party for the last little while. On Saturday, I remember complaining to Clarence (the hubby) about how difficult it is for us to do "normal" family things...mainly due to the fact that Ben can't walk.

On Sunday, a friend and I watched over 8-week-old twin girls for a few hours so the Dad and Grandma could get a bit of a break. Where's the Mom you ask? Well, the Mom is in intensive care at the local hospital. She went into cardiac arrest about a week after the girls were born due to some complications after her c-section. And she's only recently come out of an induced coma. And they aren't sure of the extent of her brain damage. And she's about to be transferred 2 hours away to a rehab centre, where she'll likely remain for 3 to 4 years. Yep, you read that right. 3 to 4 Years.

You should have seen this Dad and his little girls. It would just break your heart to see them. And their house was so cute. And all done up and ready for their girls' arrival. They were just a normal couple. Looking forward to starting their family and then WHAM! It's all changed. Life will never be the same again.

So yeah. The universe decided to serve me up a little dose of perspective this weekend. And ever since, I've been counting my blessings.

Wednesday, June 9, 2010

Let's rewind...

As you all know, I have had 2 acquaintances-turned-friends have their child diagnosed with CP in the last few months. These are both twin mommies...where 1 child has CP and the other is typically-developing. Let's call them Charlotte and Darlene (not their real names).

Well. Charlotte's child only received the OFFICIAL diagnosis yesterday. A few months back, she was actually only told that her child "may have CP". I think this may have been a way for the doctor to soften the blow.

Charlotte sent me an email right away to tell me the news and more details on the appointment. I was really pleased that she got in touch with my so quickly. And she asked if she could use my "Facebook note" that I used to tell the world after Ben was diagnosed. She liked how it was written and wanted to modify it in order to tell "her" world about her son.

When Ben was diagnosed, I wanted the world to know immediately. But I didn't want to tell the "diagnosis story" over and over and over. It was just too hard emotionally...both on me and on the person being told. There were only 2 people that got the news from me and not via Facebook / email / word of mouth. Those 2 people were my parents.

I'm not sure exactly why I needed everyone to know so soon. But I guess to me, it was like taking off a band-aid...better to do it quickly if a little painfully and get it over with.

I've just re-read that Diagnosis Note for the first time in 20 months. WOW. Did it ever take me back! I think back to that time and am so thankful that I'm not back there. Feeling that pain. Knowing SO LITTLE. Feeling so alone in the world. The pain is not as sharp these days. I feel like I KNOW SO MUCH. And I definitely don't feel alone in the world anymore.

So I thought I would post this Diagnosis Note that I wrote way back then. In honour of my friend, Charlotte...who is brand new to this world of Cerebral Palsy.

Hello Facebook Friends.

As you all know, Clarence and I were blessed with twin boys in September of 2007 and we just celebrated their 1st birthday last weekend. It was such a great celebration with over 50 family members and friends celebrating with us.

On Thursday, we went to the IWK Children's Hospital in Halifax so the boys could have EEG’s (a test that measures their brain waves) and meet with a neurologist. The EEG’s were ordered due to a “shaky episode” that Daniel had a few weeks back. Fortunately, Daniel’s EEG showed nothing abnormal and Dr. Camfield diagnosed as “shudder attacks” which are quite common with babies and nothing to be concerned about.

Although Ben’s EEG showed nothing abnormal either, Dr.Camfield did have some bad news for us. After reviewing Ben’s medical history and examining him, Dr. Camfield told us that Ben has Spastic Diplegia Cerebral Palsy. In very basic terms, at some point (either during pregnancy, at birth, or shortly after birth), Ben’s brain suffered a lack of oxygen or a drop in blood pressure. This resulted in some brain damage that affects his gross motor skills. His legs are very stiff as is his trunk.

We have known for some time that Ben is developmentally delayed. Even though he is a year old (or 10 months corrected if you adjust for his prematurity), he only just started rolling and cannot sit unassisted. And he cannot crawl. He has been receiving physical therapy twice a week since early August and we do feel that he is making progress.

Dr. Camfield was unable to tell us what this could really mean for Ben’s future. Although Cerebral Palsy is not a progressive condition (i.e. the brain damage will not worsen over time), it is impossible to say what effects this damage could have. He was not able to tell us if Ben will be able to walk, run or play sports. It is simply too early to tell. He did tell us that this kind of damage should not affect his intelligence. We are also grateful that this has only affects his legs and trunk. He can babble, smile and laugh just like any other one year old. He is also really great with his hands and arms.

Cerebral Palsy cannot be cured. All we can do is treat the symptoms. This means continuing with his physical therapy, beginning occupational therapy and monitoring his progress. He is being sent for an x-ray of his hips and will also get an MRI in the near future. Apparently, Ben is at risk for hip dislocation and annual x-rays will monitor this. The MRI will image his brain (this will be done under sedation) and will give us more information as to the extent of the brain damage.

Needless to say, this diagnosis has been quite a shock to us and we are rapidly trying to get as much information on this as we can. We have found this summary of his condition quite helpful:

We apologize for not making individual phone calls to inform our closest friends of Ben’s diagnosis. But, at this point, it’s just too difficult to go through the process time after time after time. That being said, we would appreciate phone calls from any of you that would like to talk to us. We really don’t mind talking about it and would enjoy hearing from you.

Love Cary, Clarence, Daniel and Benjamin

Wednesday, June 2, 2010

Strength in numbers - Update

A couple of months ago, I told you that two twin mommies that I knew had had one of their twins diagnosed with CP. In that post, I asked for your help. I wanted to know what you would have wanted back in the early days after diagnosis. I wanted to reach out and help these moms, but I didn't want to overwhelm them either.

Well. In the weeks since then, I have connected with these Moms.

Initially we communicated through Facebook. In order to provide support without overwhelming them, I posted many photos and videos of Ben on my Facebook page. Basically providing them a way to look and find out about Ben, without having to ask questions.

CP awareness day was during that time. I posted facts and links about CP on my Facebook page over that weekend, in an effort to not just provide support to them, but to educate all those around me (and around Ben).

And they ate this information up. They devoured it. They shared it with their husbands and their families. They posted comments and asked questions.

Then they came out to a Mom's Night Out (sponsored by our Moms of Multiples Group) and they stayed late and asked questions. And we connected. We cried and we hugged.

After that, we had playdates. And shared even more information. About local programs and service providers. And our kids played. I even loaned out a few toys that were helped Ben to sit in the early days.

It's truly been amazing. The connection between us was instant. And forever. We have a bond that is unique and special.

I am thrilled that Ben will know other kids in a similar situation. With CP. With a typically-developing twin.

I am thrilled that Daniel will know other kids in a similar situation. Typically-developing. With a twin with CP.

But I am also happy for me. I needed this. At this stage, they can't really answer any of my questions about botox or serial casting. But that's OK. That's what I have you guys (and good 'ole Google for). But they understand what it's like to be in MY shoes. They get it. And that feels good.