Thursday, April 12, 2012

Friends? Where?

By Cheryl D. Peters

Many of the blogs I follow regularly have been talking about friendship a lot. Even here, Louise has been talking about it as well. (Side note? When I read about Ben's birthday party, I wanted to call Louise and ask if I could come. Everyone needs and deserves friends along this journey called life.

A little background about myself and my family. I am a young (ish) mother to two beautiful little girls, Lauren who is 5 and Jillian who is 3 1/2 (photo left) and has been diagnosed with spastic diplegia cerebral palsy (CP). We live in Toronto with my husband and cat. One would say we don't quite fit in here. We arrived in 2007 for a three-month contract position for my husband's job. Since my husband is such a rockstar, three months has now turned into four years. We left all of our friends and family behind in Nova Scotia, and it's been quite the adjustment period.

I've always been a pretty social person. After growing up as a military brat, I adapted well to change and strived to meet new people. I suppose that's why I enjoy volunteering with Holland Bloorview so much. When we first arrived in Ontario, I had vowed to keep in touch with my friends back "home."

Meeting new people is strange when you're an adult. I can't just run up and ask them if they want to play with my toys with me. ;) Now that we have a special needs daughter, we're not eager to move away from here. Funny how things change.

I try not to feel sorry for myself, but I'm realizing how difficult it is to maintain great relationships with my friends from Nova Scotia while caring for a special needs child.

Shortly after Jillian was diagnosed, I had the pleasure of going out for dinner with a few other local girls. Funny, we were a group of special needs moms that needed some time away. I guess I brought up something about CP and later that evening, one woman confided in another friend of mine saying "I'm SO tired of hearing her talk about Cerebral Palsy all the time! Does she not know how to talk about anything else?" Ouch. Early into the diagnosis, I do realize I brought it up a lot, but it was mostly because everything was so uncertain. This woman and I never spoke again.

The friendships that bother me the most are people that I thought were my close friends. In fact, I was just "unfriended" on Facebook by someone I considered pretty close to me and my family. In fact, she was named as the godmother to our children. I do realize I haven't been the greatest friend as of late: I'm stressed and worried about school and an IEP process, not to mention worrying about spending enough time with my "typical" daughter as well as continuing all of Jillian's therapies. I tend to blame myself, that I should have been a better friend, but there comes a time when you reflect back and say "Well... you either call and talk about CP and dominate the conversation or you just say you'll call on another day...The phone works both ways and the beautiful thing about technology is that it can bring people that are farther apart, closer together."

So here I am. Four years into a three-month contract stay wondering where do you go to find friends? Perhaps I should put an ad in the paper. ;) I am so lucky that through volunteering with the family resource centre at Holland Bloorview that I have met some pretty fabulous people, and for that I'm eternally grateful.

Cheryl D. Peters is a member of Holland Bloorview's family advisory and blogs at The Beautiful Side of Hectic.


I am glad you met some fabulous people at Holland Bloorview. Most of my friends have children with special needs similar to my children. Remember quality is more important then quantity when it comes to friendship.

PS My children's Godparents were all chosen from family.

Thank you for sharing such a beautiful, honest post. I agree with GB's mom above--quality is more important than quantity. I'm also glad that you have a community like Holland Bloorview to be a part of--it sounds like an amazing place! I wonder if there is something like it around where I live :).

I can relate to the loss of friendships, and the changes in friendships: pretty much everyone has faded away since I had a brain tumor and became disabled. I think it's been harder on my kids than it has been on me, in the sense that it is just so hard for me to see that they are hurting.

Friendship is a two way street of course, but when we have done the best we can on our end, and others are making it clear by their actions or words that they are no longer interested, well, it is better, I have found, to let them go.

Dear Cheryl,

I wholeheartedly apologize for not being able to respond to your post sooner, for I remain deeply touched by your actions last Tuesday evening, as you so graciously approached, to thank me for my thoughts after listening to Donna Thompson speak.

The issue of friendship, in relation to disability, will affect both mother and child, and possibly the family unit as a whole.

Furthermore, it is important to keep in mind that you and your daughter will experience isolation and exclusion in different periods of your life. For instance, your experience with naming Jillian's godmother is not uncommon, as my parents were asked by my godfather, in a drunken stupor, "What kind of sex are you two having?" There were also those who did not want to babysit, as they wished to distance themselves from a disabled child, not knowing what to expect. Thus, the mere appearance or stigma of disability can test a friendship at any age.

However, we must remember that although the concepts of inclusion and acceptance are not shared by all, we are not powerless or left without hope. For, you will be able to shield Jillian throughout much of her childhood and early teens, but it's how you respond to the injustice posed against you which will shape her character in the years to come.

Thus, you consequently bare the responsibility, as your daughter will reveal, "to put your best foot forward, even in the most difficult of circumstances." For, was it not President Barack Obama who said, "If you unclench your fist, I will extend my hand."

Nonetheless, I also understand that I may be asking for more than you are able or willing to give at the present time--you're going through so much right now--and you may need to hear something which is a little closer to home. So, here it goes: "When all else fails, we can walk away from certain friendships. I've done it, and so will Jillian. But, you must remember, or consider, all of what I shared last Tuesday evening, when I said, "I never wanted my parents, especially my mom, to suffer or sacrifice her life for me."

Hence, there will be times when you'll want nothing more than to hold Jillian in your arms and never let her go. And, there will be other times when you'll need a break and want nothing to do with disability. This, in no way, shape or form, doesn't mean that you don't love your child. Every parent needs to "vent and relax", whether their kid has a disability or not. When taking some time for yourself, Jillian will probably say, "Okay, Mommy, see you later. I love you!!!"

Please, may we never stop turning disability into possibility, for both mother and child.

Yours truly,

Matt Kamaratakis


Cheryl - In the 3.5 years since your daughter with CP was born, have you returned (most) calls and emails from your friends? Reciprocated invitations (when things at your end calmed down a bit)? Made any kind of effort to talk about stuff that didn't pertain to your kiss once in a while?

Friendships are kinda like bank accounts -- you've got lots of goodwill built up, you can make withdrawals, etc. If all you've done for 3.5 years is make withdrawal after withdrawal after withdrawal, I'm not surprised your friends are distancing themselves from you. The friendship bank is empty. 3.5 yrs is a really really really long time to take people for granted -- especially since those folks likely had a parent or child get sick or they lost their job or had a kid or some other significant event that you completely failed to acknowledge.

I think I feel isolated and it's hard to make friends as well... and I don't even have a special needs kids. Maybe it's just me, and I like to just stick to myself.

But I think you are a wonderful friend Cheryl, and a wonderful mother to your kids.

Hi Cheryl,

My name is Laura and I live in Toronto and have a special needs son and two other kids. I'd be delighted to have lunch or a coffee with you and you can talk about CP as much as you like-or anything else. I love meeting new people.

See! This blog post was just like a classified ad for special needs Mom friends. It worked. Maybe even better than an ad. Feeling isolated totally sucks. Chin up. There are lots of great people around.

Another comment that didn't show up on blogger:

DSW has left a new comment on your post "Friends? Where?":

Hi Cheryl,

I am a respite worker in Toronto, and actually provide some support to Louise's son. I sometimes bore my friends with talking about different disabilities, most of them are good at listening or conversation back. Some aren't. But, that was a snarky comment to make about you, just because she could.

I worked at Bloorview for a couple years, so I am sure we've passed each other in the halls. You sound great and super friendly. Feel free to contact me if you are looking for a friend or worker.