My Amazing Man

Part of my commitment to myself and to my family is to do better taking care of myself. I feel weird just even typing that as I used to always roll my eyes when people would say that "But hon, you have to do things to take care of you!" and I would smile politely and say "I know, I know" and then walk away rolling my eyes saying "As if . . . ".

But if I learned anything last year - it's that I absolutely must find ways to take care of myself. So today I had an appointment and while I was there I shut my phone off. Yup, shut it off. Because, really, I NEEDED that therapy appointment and even if the phone rang, what would I do?? Walk out of an exceptionally expensive and important appointment to race accross town to do what exactly?? And truth be told I haven't had a call from the school (other than for legitimate illness) in a very long time.

I guess we were overdue.

At the end of my appointment I looked at my phone. 2 missed calls. From the school. Funny thing was though, I didn't panic. My stomach didn't bottom out. I thought to myself " I sure hope they called A".  A further look at my phone told me that they had and he had messaged me to say that he knew I was at my appointment (have to LOVE that synchronized Outlook calendar on our Blackberry's) and he was heading to the school.

All this began occurring at 9:30. By the time I got home at 10:30 C was settled at home with a worker and A was on his way back to work. Everyone was calm. C had balked at doing class work (probably partly the work, partly the heat and partly the anticipation of a HUGE purchase that he made for himself that was due to be delivered today - more on that later). Anyhow, instead of blowing up in class he removed himself to the washroom. The call from the school was in case he blew completely. Instead he managed to pull himself together and get back to class for a few minutes before A even got home.

On my drive home though I admit I worried how A would react. Would he be frustrated or even angry at the wasted drive home in the middle of his work day? Instead I heard how he discussed it calmly with our boy and made sure to congratulate him on his ability to work it through and go back to class.

He's amazing that man of mine.

Things are Looking Up

The past few weeks have been difficult and stressful around our house. A great deal of that can be traced back to me - I've had less patience, have been holding on to the stress, I've felt ready to snap at any moment. There were times where I vividly imagined grabbing my passport and heading out the door. I even researched flights to various far away lands.

But alas - I am here. I am digging my way out.

C has been having a hard time of it. I don't believe my mood is completely responsible but I do know it has contributed. This is also historically his hardest time of year, right around Easter. We have never known why (though we have some working hypothesis) but we just know that we should prepare for huge mood swings at this time of year. I had hoped we might escape it now that we have the BiPolar diagnosis and he has been on meds for it for many months. But while the meds have certainly stopped us from hitting rock bottom there is a definite amount of mixed mania and depression hitting him, rapid cycling that is so rapid it leaves me shaking and completely exhausted afterward.

I've also had some very stressful meetings with Corbin's "team" over the past few weeks. His current plan is not working for him or for us and we have been trying to figure out how to change it. Its not easy. There are so many restrictions placed on us from varying Ministry bodies (that I cannot get into on this blog) but lets just say that I find it mind boggling at this point that it is not funding that is holding us back but rather trying to find approved service providers who can work with us and our son to create the life that he needs.  I know I am being vague here - and I really wish I could write more. There have been things said and done to me (and our son) the past several months that would make your jaw drop.

But today I took a step - I called and gave notice to our current treatment centre that we will be phasing away from their services as soon as possible. We are meeting with another agency Monday to start brainstorming how to create what our son needs and from this agencies support over the past few weeks we are really optimistic and hopeful for this process. To be truthful I haven't felt those emotions in quite some time and it feels good to know that I do indeed have a range beyond panic, grief, anger, frustration and numb.

The sun is finally shining today, I had a relaxing lunch with my mom and my headache has finally gone away. Things are looking up.

Some Days

Some days he has these big ideas and strong opinions and I just smile and nod and calmly find ways to distract him

Some days he yells in my face and threatens me and I just take a step back and firmly but calmly tell him what needs to happen

Some days he is dysregulated and I grab him in a bear hug and I tell him we will make it through together.

Then there are the days like yesterday where I totally lose my shit

Days where I can't take being yelled at and defied and delayed from taking his younger brother to an appointment.

Days where I yell and I am not a therapuetic parent and I storm around seriously wondering how on earth did I get here and how much a one way ticket to somewhere far, far away would cost.

But by now I know by now that the bad Some Days pass

and tomorrow has the potential to be a good Some Day.

How I Stopped from Drowning

In response to my last post at Hopeful Parents, Get in the Pool, Louise of BLOOM left the following comment:

WOW!!! What a powerful post! I love this analogy of drowning and it is perfect and meaningful!!!  When you say you went through your own "drowning," when your body was failing you, how did you rescue yourself?

I told her that was a very good question, one that I have been thinking about a lot lately. I promised her I would post a follow up on my blog to answer her question. I have never written in detail about what happened in our family in 2010 but you can get a sense of my emotional state here and here.  But more specifically here is an answer to Louise's question about how did I rescue myself from drowning :



First, it's important to know that at the time this was all happening (my son in treatment 2 hours from our home, becoming a one income family, our youngest asking to schedule meetings with us in order to spend time with us) I was not aware I was drowning. I was doing everything I could to just get my son somewhere safe. Once he was safe people kept telling me that now things would get better - but they didn't get better for me, not for a long time. I had been waging my own private war for years and now my mind and body could not stand any longer. I sank under the water. For a while I just succumbed to the drowning and then things started to change over time - what follows here is my attempt at organizing and summarizing those changes.

Overfunctioning:
I stopped overfunctioning more by necessity than by choice in the beginning - I looked like crap, I felt like crap. I didn't try to put on a fake smile and get through the day.I stopped feeling responsible for everyone's happiness around me - cause I could barely put my socks on or complete a sentence. I let down my guard and when people offered to help - like to make us a meal or take my younger son for a few hours, I just let them because I was too tired to try to fight it. I was too exhausted to worry about what people would think of me. I stopped cracking jokes to hide my pain and instead wrote emails and had face to face conversations with people where I cried like a baby and I told them my biggest fears. I let people hug me and offer me comfort. I stopped working and it felt like the world was ending.

While there were many things I loved about my job, it was a huge burden to me at the time. One more very big thing that needed my full attention and commitment. Attention and commitment that I just couldn't give. Freeing myself of that obligation was a huge weight off my shoulders.

I stopped offering to assist with community events etc for our local parent network. I couldn't make commitments to anyone for a period of time. I temporarily resigned from all committees and task forces (except one that only meets 4 times a year).   I told myself I wouldn't volunteer anywhere for anything for 6 months (in my head I doubted I could make it to 3 months). A year later and I am just now starting to volunteer again. 

Several times a day I begin to slip into old patterns - opening my mouth to say "yes" impulsively but now I'm finding it is taking less and less effort to slow down and sometimes say "no" or to delegate things to C's school, treatment team or in home workers. It's taking a lot of practice and while it feels foreign to me most of the time, in the end it also feels very right. I'm hoping that one day my default setting will be one of self preservation first and foremost rather than one of constant sacrifice.


Asking for Help and ACCEPTING Help
I began to understand that no one could hope to parent our son alone. I needed to ask and then let people help me more, to help him, to help our family. I needed to step back and allow others to have more of a role with our son - and people really began to step up to the plate. My Sister in law began visiting him whenever she was in the city he was in. She would bring him special treats and play with him in a way that others at the centre were envious.  Other extended family members wrote him letters and called him. I could relax about not always being with him because others were helping to fill in the blanks that the distance was creating. He began to see that other people loved him unconditionally as well, not just his mother.

As I wrote about here, I also needed to get clear about what our family realistically needed from government services and the community professionals in order to be able to plan for our son's return and to be preventative. We needed to do everything in our power to try not to head down this path again. My husband and I spoke at length and he came to more meetings with me during this time. I knew I could trust those at CPRI so I leaned heavily on them during my son's time in residence there and I did not allow myself to feel guilty about it for more than a minute.

I sent out an email to all my close friends and co-workers explaining a little as to what was happening in our family. I was clear, no sugar coating it, that our son and family was in crisis. That we were feeling isolated and overwhelmed. I asked people to not only keep us in their thoughts and prayers but also to please stay in touch - as living with a child with severe and complex mental health needs can be so isolating.

In response my co-workers started up a meal chain for us - It was a huge weight off my shoulders when someone brought a meal twice a week and I could relax and know that if nothing else happened that day at least my family ate a good healthy meal. It also made my friends feel useful, they felt like finally there was something they could do to help our family after watching us struggle for so long. They had all stopped offering to help years ago because I thought it was all my burden to carry and it felt weak and wrong to accept things from people in that way. But when I was travelling 4 hours several times a week to see our son it no longer felt weak or wrong to accept - it felt right and we were (are) so thankful for that. I see now that it was my pride standing in the way.

Connecting with People
Beyond accepting help - I knew I needed to end the isolation that had crept up on me and my entire family. When you have a child with unpredictable rages and out of control anxiety and severe loss of reality there is no safe place in the world but home is your best bet. So I made a concerted effort to find ways to share with trusted people about the trials and tribulations in our day to day life that would make me feel less alone but would not be speaking ill of my struggling child.  I needed to let my guard down and allow myself to be vulnerable to people who could be trusted. I needed to know that although it felt like if I allowed myself to cry that I would never stop, that it wasn't true. I could feel and face the emotions without being destroyed by them.I discovered that it felt really good to be hugged when I was in pain.


Taking Care of Myself
I admit it - I would always cringe and maybe kind of go "ya ya whatever" in a dismissive way whenever people, books, media would talk about how important it is for parents of children with complex needs to "take care of themselves". I always brushed it off and was more than slightly annoyed. Sure, take care of myself when I can barely get through each day. Sure, let me get right on that.

The truth however, long before I became a mother I had decided that I wasn't worth spending time, attention, money on. I did the very basic as far as hair and clothes and rarely went out or spent time with friends. The why of this could be a whole other book post. All I know is that having the children I have just severely decreased the likelihood that I would take any time for myself.  Hitting the bottom of that pool and almost drowning changed that. Being a martyr wasn't working for anyone. It was time to create "me" time and to not only NOT feel one ounce of guilt about it but to also defend that "me time" and activities within an inch of my life. My soul, my very existence requires me to protect the time to do activities that I enjoy - that fill up my lungs with air so that I can swim to the edge of the pool and hoist myself out.

I needed to find ways to take care of myself - to unplug from the world and find inner peace and joy. I needed to reach out to friends and acquaintances and go for coffee and get a massage (*note: I have some serious sensory issues and it was a HUGE leap for me to give and receive hugs, to move on to getting a massage was monumental). I needed to put down all the books about disorders and government and lack of funding. I needed to focus on reading silly, lighthearted books and taking bubble baths. I needed to get my hair done and drink way too many coffee's. I needed to do things that felt good, that felt freeing, that I had long ago abandoned and forgotten.

I also spent money I didn't have to go back to therapy. I needed to be able to talk to someone, to process with someone all that had and was going on in my life. I needed a safe place to fall apart and to explore and to sort through. It was a hard decision in that it was not cheap and I always felt like I should be able to do it without therapy. But that argument with myself was short lived. I was fighting for my life and I believe in therapy and so I went and I worked hard.

Hope
I needed to fiercely believe that my son would be ok and I needed to believe that even if he wasn't that we would survive it. I needed to purge our lives of the negative, naysayers who did not support our son and/or did not share his vision for how he wanted his life to be.  I will write more about this later.


So there is my first attempt to summarize how I stopped drowning. Really it was a combination of learning how to swim better and grabbing hold of the lifeline's that people threw to me. I'm curious to know - have other parents felt like they were drowning at times? If so - what did you do? what helped you?  Post a comment or link to your blog. I'm far from done this part of my life - I feel like I'm hanging on to the edge of the pool catching my breath - fully aware I could start to sink any moment if I don't keep moving. 

Winter Fun

I'm very achy and sore today but thankfully I am not sick. Nope, it's the fall out of my most recent outing with my 7 year old.

I realized last week that while I used to always go tobogganing (or sledding I think you call it in the U.S.) with C as a way to get him all the physical activity he needed and to try to preserve some of my sanity - I rarely ever take J.  There are always dishes to do, laundry to be folded and to be honest I am feeling older and out of shape and just downright lazy.

But I made a promise to myself that I would take him considering that following the horror that was 2010 I have this new resolve to seize the day and enjoy moments with the kids. To really be in the moment with them, not just as a casual observer or taking pictures on the sidelines to never one day scrapbook in an attempt to try to prove how happy and involved I was in their childhood. (the pictures here are actually from last year - we were too extreme yesterday for me to risk bringing the camera. :-)

So yesterday C was away with his Dad so J and I headed out to the hill. I made sure I was warm so I wouldn't wimp out and we took two toboggan's with us. We got there and there were about 5 other families already enjoying the snow. I felt a little self conscious at first but it didn't take long before J and I were racing each other down the hill. And I don't mean that I sat on the toboggan and pushed off gently. Nope we started from standing and ran and launched ourselves down the hill.

When I posted something on my Facebook page a friend said she was nominating me for mother of the year. I pointed out that I would hardly fit that bill since on one occasion I actually reached over and caused my son to do a somersault in the air off his board and he landed face first in the snow. The I laughed at him (well I made sure he was okay first and he was laughing before I was). At one point he jumped off his board and onto my back. We were shrieking hysterical messes and while I didn't last long the quality seemed to hit the spot for J.

Of course today my rib cage hurts and my whole body aches but soooooo totally worth it!

Embracing Important Things in Life and Letting Go of Everything Else

So I know I fell off the bloggy bandwagon a few weeks ago. sigh. But it was for VERY good reason.

We celebrated my birthday with a trip to Toronto to see Stuart McLean and the Vinyl Cafe at Convocation Hall at University of Toronto. It's A's alma mater so it was nice for him to be back on campus if even only for a short time. It was J's first time seeing Stuart and C's second. The boys were wonderfully well behaved and it was magical watching the show in the very very old Hall.






Then there have been all the Christmas preparations. I really wanted to embrace this Holiday season. I didn't want it to all fly by and have regrets about the things I wished we had done (or that I had done).

So I made cookies - lots and lots of cookies. C was proud to be my helper and this year he actually helped. He became a pro at using the cookie press and was quite creative in the topping placements and choices.




and gift trays and baskets for teachers, educational assistants and other school staff. Plus former co-workers and community agency professionals that have done so much for our family this past year.





There was the Christmas photo (did it myself and it went wonderful - after about 50 shots and me losing my mind) and cards (which I was determined to do as I hadn't been able to last year) and the family newsletter (yes we do one but no it isn't all just bragging about how great our kids are).

Then there were the Gingerbread masterpieces. Usually we do a prefab store bought house. This year I was determined to create one. Then the boys couldn't decide what kind. So C asked for a castle and J asked for Big Ben. Uhhhhh, ok, thanks guys - didn't they realize I had never done this before? But it went surprisingly well and we ended up with



and



So that is where I have been and we haven't even celebrated Christmas yet. For THAT we have to head out to spend it with family.

Merry Christmas