Santa Love

Something important – even magical – has happened for Kate. Like any young child, she loves and believes in Santa.

She has spent the past 7 years being terrified of the jolly old elf, but this year the tables are turned. Santa is a regular in our home. We look at picture books about him, we drag around Santa stuffies, we have Santa ornaments and we regularly stalk him at the local malls.

To be honest, we saw the Santa love starting to emerge last Christmas. She watched him from afar, from the safety of holding onto my hand or from her dad’s arms. She was curious of him, she liked to see him and talk about him, but there was no way she was getting close to him, let alone sitting on his knee.

Santa loved has lasted over the much of the past 12 months – in Kate’s world things don’t end just because the ‘season’ is over. We celebrate on an ongoing basis as long as Kate shows interest. We have easily watched Dora’s Christmas Carol, featuring Santa, more than 100 times. (Birthdays and talking about birthday parties lasts a LONG time around here too). But Santa love has gone into overdrive since he started appearing at malls, in holiday decor, at xmas tree farms, and in arts and crafts at school.

He is hands down one of the best markers of Kate’s development. Kate is entering the world of “magical thinking” and pretend play. Suddenly princesses have become important, and playing mommy to her dolls and stuffies, and Santa and loving him and are part of that. Kate’s ability to understand – at some level – the ‘pretend’ of Santa shows a change in her cognition. There is some research that shows understanding ‘pretend’ allows a child to develop greater social understanding, and the ability to understand someone’s else’s perspective and this leads to an increase in social interaction and social play.

For our family, it is the joy of seeing a little girl with so many challenges light up at the sight of a warm and friendly person in a bright red suit at Christmas time. It is the heart-bursting moment of seeing her ‘get it’, and to see her excitement and joy, and knowing that she is her own little person growing at her own pace, but that she can enjoy Santa just as others can.

There have been many Santa moments for us this year – all of them wonderful. The most recent highlight at the Rogers House Christmas Party, Kate asking Santa for what she wants most for Christmas – French Fries.

Kate and Santa 2014

 

Julie

 

 

The Art of Imperfect Decision Making

A Recipe for Making Decisions

How to make an impossible decision in 7 easy steps 

 

Ingredients:

Information and Research

Gathering of knowledge from ‘the experts and specialists’

Analysis

Questions

Discussion

Weighing of Opinion

Pros/Cons

Evaluation of information

Decisiveness

Gut Instinct

Support

 

Method:

1. Gather as much information as you can through research. Mix this with knowledge and expertise from many sources (e.g. experts, specialists, others who have made a similar decision), placing an emphasis on those who are leaders in the area/topic on which you are trying to make a decision. Be prepared to search this information out internationally.

2. Mix all of this information, knowledge and expertise together and conduct an analysis by comparing and contrasting everything you now know. Where is the information similar, where is it contradictory, what are the gaps in your information, what other sources of information and expertise might be available, and find out what you do not know that you need to know. After this step in the process you can move to formulating your questions and identifying what more you need to know or who else you might need to speak to about your decision.

3. Your next step will require several discussions about the decision you are trying to make. The structure of these discussions will vary, and your recipe for decision making could include: 1 to 1 discussion, informal conversations with trusted friends/family/professionals, formal multi-disciplinary team discussions, discussions with specialists in the field. You might conduct your discussions over the phone, face to face, or over video-conferencing. You may also need to consider travel to other destinations in order to conduct your discussion in person. Consider the following when organizing and preparing for discussions related to your decision-making:

– Bring a friend who can listen and take notes. It is difficult to take all the information in when you are in a very important discussion/conversation. Having another person to assist in the task of listening and note taking can be very helpful to your decision-making process

– Ask if you can tape record the conversation. This can be helpful so that you can hear the conversation again.

– Prepare in advance. Write down a list of questions and concerns related to your decision and send them to the meeting participants in advance so that they are prepared to address them. (Sometimes sharing this list with knowledgeable friends or professionals in advance can help you to refine your list of questions).

– Bring a notebook and paper.

– Ask another person (social worker, nurse, trusted professional) to facilitate the meeting so that you can focus on the discussion and not on managing the meeting.

4. Analysis and Weighing of Opinion.

You will need time after the gathering of information and knowledge, analysis and discussion to weigh the information you have been provided with. A helpful tool  in this step of the Decision Making Recipe is to develop a Pros vs. Cons list and then to add a value or weight to each of the Pros and Cons. An example of this can be found here, Ottawa Family Decision Guide.

It might also be helpful in this step of the process to engage a Decision Making Facilitator or Decision Making Services, a third party who guide you through this process. This is particularly important to ensure there is open communication and that all parties of the Decision Making Recipe are working together and communicating well. In intense medical decision-making, this can sometimes get lost – this is where facilitated sessions can help.

Professionals can help guide you through the weighing of opinions and information, and can help identify where your priorities lie with respect to the decision you are trying to make.

5.  You may have to repeat Steps 1-4 more than once in order to feel decisive about your decision.  It is important to know that important decisions cannot be rushed, and you should feel supported in taking your time to make a decision.

6. Gut Instinct.

Your gut instinct needs to factor into to your decision-making. If it feels wrong, it probably is. In my experience, my maternal instinct has been referred to by our medical team and decision-making team, and I have been told to listen to it and factor it into my decision-making.

But what if your gut instinct isn’t clear? What if it isn’t saying anything at all?

I call this the vortex of decision-making. Circling and circling because the information, expertise, knowledge that informs the decision you are trying to make is imperfect and incomplete. How do you make a decision with imperfect and incomplete information? You make the best decision you can with the information you have.

The vortex of decision-making, also known as “indecisiveness” can be debilitating. It can eat away at your soul. It leads to stress, anxiety, possibly even depression and should be avoided at all costs. You avoid it by asking more questions, asking repeated questions, clarifying as much as possible and eventually coming to a decision, even if you are making that decision with imperfect information. A recommendation for your Decision Making Recipe is to set a timeline for making your decision (if one has not already been set for you). Living with an ongoing decision is very limiting and difficult. Once it is made you will find yourself ‘unstuck’ and able to move forward.  The decision can be changed, but at some point you will have to commit one way or another.

7. Once you have made your decision, sit with it. Let it absorb, start to live it and get as comfortable with it as you can. Shift your mind-set toward the decision you have made. Then push the ‘Send’ button and let the professionals know the decision has been made.

8. Once you’ve made your decision you will slowly need to start sharing it. Make it clear to others that you expect to be supported in your decision. Those that are not providing support need to play a more minor role in your life. They cannot contribute to the vortex of indecisiveness. They need to be ‘on-board’. Finding those people and giving the important role of supporting your decision is a last and most important step in this process.

 

Other Things to Consider:

– Others cannot and will not make the decision for you, but you can still directly ask your trusted team “What would you do?”

– Many decisions are imperfect because there is not enough information available or there is no obvious choice between the decision(s).

– Decisions can be changed/reversed to a certain point. 

– You should never feel pressured about making a decision.

– Include others in supporting you once your decision is made.

 

Julie

Note: Our family has been going through the process of a very difficult medical decision for Kate for the past 2 years. The Decision Making Recipe is based on our experience. We have made our decision  and it is imperfect and lacks all the information we need, but we are moving forward. 

I wish you the best of luck with yours. 

Feeling Included.

Bloom is a fantastic special needs, medically fragile, medically complex parenting blog from Holland Bloorview and edited by my friend Louise Kinross. (Incidentally, if you like them please consider supporting them as they run solely on donations).

This is a recent article that was posted, and I wanted to share it with you here and let you know my thoughts about it.

The first time I read the Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded’, deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…”she can’t hear you”

“yes, she’s 7…but she’s more like a 3-4-5 year old”

“she is signing or saying this that or the other thing”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favorite color is (but she can tell you her name and how she is!!). Some (few) make an effort to include Kate, but playdates, birthday party invites, get togethers with the girls is not really part of her life sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friends – and the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad?  Yes, I grieve ‘loss’.

More importantly, does Kate feel left out? No.  Is she sad? Nope.  She has her friends at school that will change year to year, but that she values nonetheless, she has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am invisible mom. I think people see me. If they don’t I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.

Julie

 

A

Turtle Turtle

Turtle 1

 

Turtle.

It’s my word for when I retreat into myself.
It’s when I know that I am struggling and need to shut out the ‘noise’ of life.

I go silent. I get quiet. I don’t return email or calls or texts. I don’t go out. I sleep in. I cancel things – or I don’t show up.

Turtling comes from a place of being overwhelmed, which can be an easy thing to happen when you have an extremely unpredictable life.

It’s my code word, and those close to me know what it means. I’ve even thrown it out there on FB before “Turtle” will be my post, and my code word is understood and respected. Some friends will respond with “hugs” or words of encouragement, others with a “question mark”. It depends on how well you know me, and how well you understand the life I am leading.

My turtling metaphor indicates retreating. Pulling into my shell and self-isolating in a hope for self-preservation. It is instinctive and unplanned. It just – happens, and it is absolutely necessary. No one can keep this pace indefinitely. It is unplanned, but it happens when it is needed and when there is space and time for it. (It’s hard to turtle when you have to “on” and have to be a medical/school/therapy/treatment/acute illness hardcore warrior mama). It’s like getting a bad cold  or flu when you are on holidays…like your body finally realizes you are on a break and “have time” to get sick.

And Turtling isn’t depression. It’s blue and can be sad, but it’s different every time. It’s sort of an unplanned shut down. You haven’t plugged your power cord in for awhile and you’ve been ignoring those pop-up warning messages, so you go into forced shut down. It doesn’t feel good to go into unplanned shut down, and you aren’t sure how long it will take to power up again.

Why Turtle?

The shell. I pull into it. It’s sound proof and there are no windows or doors to peak in to see what I am doing. It’s dark and muffled and the space is small enough that I don’t have to invite anyone else in. But…if I need to poke my head out for something, I can.

And it’s hard – the shell – it protects me. I like that.

Am I Turtling now? You are probably wondering as I write this. I’d have to answer yes. Having a hard time with wanting to be out and about. Overwhelmed with decision making and intense responsibility that are beyond what you can imagine – or anyone should have to go through. (Seriously beyond. Like 1 in 7 billion beyond). Taxed.

How long will the Turtle last? It’s hard to tell. This one is a doozy. I feel like it will be awhile.

Do I still smile while I turtle? Yes. I do. And people ask how I am and I say ‘fine’. What do you say? Just smile and nod. Smile an nod. (And I find cute images of turtles to share).

Turtle 2

Those mom friends of mine out there who are reading this, and have special kids like Kate understand what I am writing here. I’m sure you call it something different. I know you have experienced it – and will again. My words of wisdom/advice, embrace it. Let it wash over you and don’t fight it. Let the Turtling happen. Every now and then poke your head out to see what is going on, to remember there is a life you have outside the shell that is important, be sure to get the basics done, and make at least one plan for the day (today I will make a meal, today I will run one errand, today I will make one phone call), and slowly ramp up those ambitions to draw yourself out of the shell – but don’t rush it. Decide what ‘noise’ is the most important and pay attention to that first.

Be social?  Well, you can. But it will exhaust you and people won’t understand. Phone calls can be good, if you have the energy. You may want to warn the person on the other line that you will be random, you may cry, you may rant, may be angry, or just sullen and moody. Try not to be too angry at every other living person. I walk around in a fog of feeling like I am on parallel universe to others who can’t relate at all to my life. (Warning: hanging around really happy people may make you want to slap them.)

You may also want to avoid driving. (Those red things at intersections are stop signs).

Exercise? Again, you can. But sleep and pyjamas feel more like the right thing to do. Then again, going for a good walk is probably well advised. (And I am a RUNNER).

Eat Well? It is advised. Throw in some chocolate for good measure. Be wary of too much sugar and caffeine though. You may not realize it, but Turtling likely means you are running on fumes and adrenaline. Adding a load of caffeine and sugar to that mix can be harsh. Wine is also a part of this. I’ve been told that more than 9 (6 ounce) glasses a week can be problematic. (Really??!!)

Sleep? Yup. At first you won’t. The lead up for me is my mind racing, staying up too late, not able to settle into sleep (and Kate doesn’t help that). Then the crash that precedes the Turtling happens and post crash all you will want to do is sleep. Hopefully you can set yourself up to get some. Respite from your child will also help.

(The above are the four most basic prescriptions of the ‘experts’ the doctors, counsellors, and advisors that we speak to. They do work, but when you are in the middle of Turtling you sort of want to thumb your nose at them. It’s hard to get the momentum to do any of these well. Self-care isn’t the first step when you are Turtling.)

Just remember you can’t stay in the cozy shell forever. Life is still happening and moving along. For the life we lead, Turtling too long can be disastrous. And you can probably count on your unpredictable kiddo to yank you out of Turtling PDQ (pretty darn quick), if they decide to get acutely unwell while you are holed up in your shell. “No more of that mom, I need attention now! Off to CHEO we go!”

And so the cycle goes. Recognize it for what it is.We can’t live this life of constant stress, worry, fear, anxiety, sadness, grief, joy, happiness, relief, frustration, anger, vigilance without turtling every now and then. I have realized it is physically impossible. I/we need moments where we shut down. It is a basic survivability necessity.

Turtle Turtle, welcome to your shell.

Julie

(Written as I sit here in my pyjamas and contemplate my ambition for the day. A shower perhaps?)

It’s A Good Day Today

People often ask how Kate is feeling.

“She looks great today. How is she feeling?”

          “She’s so energetic today. How is she feeling?”

                             “She’s so cute. How is she feeling?”

It should be an easy answer. “Yup, it’s a great day. She feels great”. On occasion I can say that, because it is true. Other times, I just say it because it is easier than the real answer.

Mitochondrial disease is unpredictable. Kate can look terrible in the morning when she wakes up and I can fret and worry about sending her to school or about going to work. Sometimes I may choose to keep her home and am thankful that I did because she continues to decline, other days I take the ‘risk’ of sending her to school and she does just fine once she is there.
Kate can also wake up full of beans and I am convinced she is going to have an amazing day full of energy and ability to attend to what is being shared with her, then I end up with the 10:30 a.m. phone call from school that “Kate isn’t doing well…she is very tired…she is seeking a lot of comfort and is very pale/seizures/crying/shaky…”
It’s been a little over 2 hours and what could have been her day – what should have been any typical 6 year olds day – has ended.

So the answer to “How is she feeling?” is a complicated one. It is variable and it can change, and Kate can’t let me know.

I am often Kate’s voice, and I am the one who will let others know how she is feeling. I interpret her colour in the morning, if she feels warm to the touch, if her face is just a little pinched looking, or if she is smacking her lips (which tells me she is nauseous). I see the shakiness, the loss of her words – both ASL and verbal, and her apparent loss of comprehension. I see when she is struggling to grasp the most basic cognitive task, ones that on a “good day” would be easily accessible to her. I see her left eye droop and her right leg drag. I am the one who can truly tell how she is feeling.

It is one of the constant struggles with mitochondrial disease. The ups and downs of energy and having “A good day”.

Even with Kate’s medical team – who trust my mama instinct and intuition, I will have to correct them when they remark “How good she looks today”. “Actually”, I will say, “It’s not really a great day – she is having X Y and Z symptoms today”. And they stand corrected and we move on as if Kate has just spoken for herself and told them how she feels.

Kate can’t express how she feels – how her energy is – how shaky she feels – that today, she can’t seem to do that “potty” thing that all of the adults in her life are so keen on because her muscles just won’t respond for her. Or that she may seem frustrating behaviourally, but that it is her only way to cope with how terrible she feels.

I am her voice. I see the look on her face of fear, pain, worry, stress – the looks that others don’t see as easily has her happiness and joyful looks. I am her voice when it is not a good day.

And I send her out into the world without me constantly by her side – having me voice for her how she feels for others to better understand. I am told it is part of ‘letting go’ just a little, letting her create and live her own life. But I feel guilt and fear. I feel she is only partially ready. And I wonder how to organize myself around the unpredictability of her disease and how she is feeling.

This all became more acute for me this year as Kate now has a driver to transport her to and from school.
Yes, I am told they have police record checks and that they are bonded etc. But I am still putting my vulnerable, cognitively challenged, low verbal child in their hands. And she can’t tell me or report anything back. Did he drive to fast? Was he on his cell phone? Did he talk to you? Did you feel safe? Was it a good day?
She has no voice to tell me – I am her voice.

And she arrives at school, with an entirely new teaching team who don’t know her well yet, new friends and a new environment. “Was today a good day?” isn’t a question I can ask her. “How are you feeling?” isn’t a question her teaching team can ask her. And she doesn’t have me with her, so she doesn’t have a voice to tell anyone that she has pain, or discomfort or is so fatigued she could fall over.

It is the dilemma special needs parents live with. And beyond being with her every moment, I am not sure there is an easy answer for it.

 

Julie