I have to admit that I was dreading it just a little bit. I was dreading being solo with Kate for 3 days, having no respite, not being able to hand over with her dad, or distract her with her brother or the busy-ness of family life. She had had a difficult couple of weeks with fatigue and irritability and I dreaded having to navigate 72 hours of just getting through the day. We have no family support nearby and so grandparent visits or walks to give us a ‘breather’ are just not accessible. I often joke about needing surrogate grandparents just to give us the much needed mini-breaks. This is not meant in offense to my parents – who, despite living far away, make efforts to visit often. But I watch other families with vast networks of family in the same city with absolute longing and wishful thinking – sometimes outright envy. They have ‘typical’ kids and get the regular breaks (ok, that’s jealousy there). Thought bubbles start to populate my imagination…’maybe we should move closer to family’, ‘maybe our entire family will move here’, ‘maybe we’ll discover a long lost great aunt or uncle who will take a keen interest in Kate’. Yeah, it’s not happening. So we do it solo and we try and get breaks where we can.
Despite dreading the long weekend, it actually turned out quite pleasant. My boys (the big one and small one) were off to a hockey tournament, and knowing this well in advance I made a plan for Kate and I. Really it was a list of activities both at home and as outings so that I had prepared ways to keep us occupied. More occupied, even if it was a drive in the car or a walk in the stroller, would mean less screaming/whining/irritability.
We did get off to a little of a rough start. Kate was having a poor day on Thursday. Poor energy and what I suspect was a big sugar drop during her auditory verbal therapy session that left her in a puddle of tears and anxiety and irritablity. Poor pet – a quick sugar fix pulled her back, but the day wasn’t the same. Off to bed early and a movie for mom – no sense in stretching that day in any way.
The next 2 days of our girls weekend were lovely. Kate and I were both lucky that she was feeling well. She was ‘optimal Kate’ as I like to refer to it. Optimal Kate has good energy that lasts for most of the day, she is happy and calms easily, she is less irritable, she is communicative and makes better use of her ASL and verbal language skills, she doesn’t scream (maybe just squeals of happiness), she has good balance and can be relied upon to walk a bit more independantly without crashing and falling at any moment, or requiring the use of a stroller at all times (or being carried). And so the timing was perfect, I got optimal Kate all to myself and our girls weekend turned into a couple of days of really appreciating my little girl.
I find myself so mired in Kate’s care, management, coordination, advocacy – as well as raising my son and being a wife – moments to just enjoy Kate and to appreciate her don’t happen as often as I’d like. I don’t mean to say I don’t appreciate having Kate and that there are not day to day moments when we have fun and we bond and we play. But to have ‘mom and daughter’ time. To sing songs (over and over and over), to play dolls, to wander and walk with no timeline or particular destination, to have coffee and croissants (just the two of us) and to ‘chat’…yes, we did a lot of commjunicating about what she observed, who she saw, songs she wanted me to sing, pictures she wanted to look at, books I should read to her, how she loves to swim and jump…all at Kate’s level and Kate’s pace, but we did ‘chat’ – and it was lovely.
And so I kept her to myself quite a bit over those 2-3 days. I didn’t travel to the hockey tournament to see the final games (we won!) as suggested by my husband (likely worrying that Kate solo was getting tough based on previous experience), and I didn’t do much hanging with friends and their kids. I did things with Kate. I didn’t feel a need to escape or get away or a desperate sense of feeling fatigued and overwhelmed. Healthy Kate, ‘optimal kate’ is fun. I wish I had her more often.
I am going to plan more ‘girls weekends’ for Kate and I. Encourage my boys to get out and do their ‘boy things’. I hope we can recreate what was so special about this past weekend. Until then, I am going to work hard to hold onto really enjoying Kate, slowing the pace and sitting with her and really connecting with who she is and what she has to say in this world. She truly is a special little girl. Unique (obvious) and joyful – in spite of it all.
Slow down mommy and enjoy me.
I will KK my dolly. I will.
This blog post deserves a long and well written story. Unfortunately today is not the time for it. I don’t have the head space, nor the desire to sit at the keyboard (*gasp*), but I don’t want the opportunity to pass without sharing this recent news story on complex care coordination here in Ontario.
Coordination of Complex Care has many different titles and is supported in many different ways (or not at all) across the provinces and within Canada. Comprehensive Care and Supported Care, are also titles used to describe the type of programs.
These programs support children with complex and rare medical conditions. These children need support in the hospital to coordinate the large number of specialists involved in their care, coordinate their medically complex conditions, and also provide support in the community (nursing, community care access centre, therapies, OT, medical equipment). These are children with more than 5 different medical conditions, several specialists involved in their case, and technology dependant. They are children who are surviving challenging diseases and conditions identified in infancy and living longer thanks to advances in medicine.
When we hear ‘complex care’ or ‘care coordination’ we often think of the elderly population and the pediatric community is often forgotten or at best – overlooked. Although very small in number (less than 1% of children), children with medical complexity account for one-third of child health spending in Ontario (Dr.Eyal Cohen, Sick Kids)
These children are frequently hospitalized, and 25% experience readmission 30 days after discharge. They are high risk of medical error because of their medical complexity and gaps in care, communication and medical oversight.
Parents are left to step into the formidable role being left to them by the health care system. Overnight, parents of medically fragile, medically complex children become nurses, therapists, medical coordinators, and care coordinators. More than half of these families have a parent stay home and leave their career in order to care for their child. Financial problems, marital stress, sibling issues, poor health, and physical and mental stress overwhelm these families.
So the question is, What can be done?
I remember when we were having our most difficult moments with Kate’s health – and we had no one coordinating her care. We were crying out to anyone who would listen about the need for someone to be “in charge” of Kate’s case. Who could we turn to when things were not going well with Kate on a number of fronts? Her family doctor was simply over his head and had no idea how or where to get the ball rolling to help Kate. Because of the siloed structure of our health care system, our pediatrician did not have access to Kate while she was in hospital, nor could he directly advocate for her with her myriad of specialists. There was a need to create a coordinated interdisciplinary team approach for Kate – and no mechanism for which to do it.
We were fortunate to be ‘in the right place at the right time’ as CHEO was just piloting their Coordination of Complex Care Program in March 2010. Kate was the first child admitted to the program. She continues to be part of the program 3 years on.
Here is part of that story:
Lean In - I saw this book title in Chapters yesterday. Unfortunately I didn’t have time to have a quick peek, but I have heard about this book in the media. In a nutshell it is a sort of a non-feminist manifesto about women taking charge of their careers and ‘leaning in’ to pursue their goals despite setback and/or ‘mental obstacles’. Having not read the book, I’m pretty ill equipped at commenting on it. At first glance and upon reading a few reviews, I’m not sure I’ll even give it a read. I’m not sure I am the right audience for it. Since Kate has been sick I have not been at work. My career has been effectively sidelined for a more important reason (although one that doesn’t pay as well financially). No amount of ‘surmounting the mental obstacles’ is going to get me back in the workforce at the pace I was going. And believe me, I’ve tried. So why even mention it? What inspired this post is simply the title of the book, “Lean In”. That statement hasn’t left me for the past few days. Lean In. It’s a synonym for ‘one foot in front of the other’ or ‘just keep swimming’; two other powerful motivating metaphors for me.
Just keep moving forward.
So I’ve been reflecting on why ‘moving forward’ is such an important mantra for me. How does it serve to motivate me? As I look around me, I have set myself up in life to ‘move forward’ to continue to push through. When things get tough, I put my head down and I push through. I don’t look for a way out anymore. Is this a characteristic of the ‘special needs parent’? Has it developed or have I always had it – and it’s simply been challenged and honed even more?
I don’t often look at the awesomeness or the enormity of major challenges in their entirety anymore. If I did, I would feel daunted and worse, desperate. I would be overwhelmed and likely suffer a lot of anxiety. That is not to say I am not aware of the complexity of the challenge or how long it might take to get through, my former ‘policy wonk’ hat won’t let me forget to be aware of the ‘big picture’, but I don’t focus my attention there for long. And when we are in crisis, look out. I have the game face on and I power through. But that surge of adrenaline and focus is finite – and our experiences over the past 5 years have drained my ability to recover from those focussed efforts of intensity and coping with acute challenges.
Caring for a medically complex and special needs child is such a challenge. The enormity, complexity and unexpected obstacles of each day can be overwhelming. If I look at the bigger picture and consider all the things that have such an impact on Kate; her disease, her multiple medical conditions, her regular acute episodes, lack of treatment, no cure, progressive disease, uncertain future, whether she will live to be an adult, what her future holds…and more. The enormity makes me want to curl into a ball and hide in a corner rocking myself. It is overwhelming. It makes me never want to come out of my room. It makes me want to scream.
So I try not to face that enormity. I try to Lean In to the day and tackle what comes my way. Will it be a screaming day? Will she have good energy and we’ll be able to manage the small list of tasks I need to get done that day – or will she be so unwell she can’t go to school? Will there be good communicaiton or none? Will she have a seizure and school will call for me to pick her up? Will she need to go to the hospital that night or early the next morning? Will I be there for 3-5 days? Will the new medication work? Will I hear from the specialists about the bloodwork we are waiting for?
Yes, the questions are endless the enormity is huge. So I Lean In and I push through each moment and I get done what I can get done, one foot in front of the other, I just keep swimming.
And when it all goes off the rails, Kate and I sit and rock. And the best I can, I let it be and let the plans for the day slip away. Because that is all I can do.
There is a lot to be taking from Lean In. It is analogous to not giving up when faced when adversity. It is as simple as that. It’s really not a special recipe. I think I have always had that. My life with Kate has taught me to have that in spades.
Written yesterday, February 28th Rare Disease Day
(from my iPad)
The irony of today’s events is not lost on me. Today is Rare Disease Day, and I was to travel to Toronto to be part of a symposium to discuss frameworks for complex care to support medically fragile and complex children. Instead, in true testament to the nature of Kate’s rare mitochondrial disease, I am at our children’s hospital with Kate waiting for a bed as she has been admitted because of an inflammatory cascades episodes.
Kate is diagnosed with a novel form of mitochondrial disease. The first person in the world diagnosed, and now thanks to international efforts of research and science, she is one of 10 known cases – and 1 of 4 children alive today with this yet to be named disease. Global expertise and science continue to collaborate to better understand this disease and to try to find a treatment or cure.
Kate’s disease is unpredictable and chronic. Both mean that life is never easy for Kate or for our family. We all live in the constant shadow of her disease, ready to react on a moments notice, ready to change the plans of that day as an entirely new one might be needed.
Rare Disease Day went unnoticed for the most part. There was no big celebration here in Canada. CORD (The Canadian Organization for Rare Disease) hosted a conference, but their media relations are poor and the I credible research and science and importance of rare disease awareness buildng went unnoticed by the media. In our way, Kate and I tried to raise awareness. I took to social media, and Kate…well Kate got sick and in doing so we educated a whole new group of doctors, nurses and technicians on her rare form of mitochondrial disease.
Kate is still in hospital, feeling crummy and still not stable enough to go home. In another wing of this same hospital and overseas and in the US, there are incredible scientists and doctoers trying to better understand Kate’s disease and to develop a cure. Though we have yet to meet most of them – and hope someday we will – we want to thank them for the work they do, for trying to save my daughters life. On this day that is dedicated to them and their patients I want to honour them.
Rare Disease Day 2013 – Rare Without Borders
My friend Julie (Keon) at What I Would Tell You, writes with such imagery. It might be because her most recent posts seem to come to her in the wee hours of the morning – like dreams.
This Road, was posted this morning and really resonated with me. Full of imagery about the road less travelled. It reminded me of another post called Welcome to Holland that I read a couple of years ago and helped me to recognize - and maybe put into so many words – the journey we had been thrust into with Kate. Both poetic descriptions capture the journey of the special needs child. Where Julie’s differs is in adding that component of medically fragility, medical complexity and not knowing how long that road with your child will last, where the bumps might be, or when your ‘vehicle’ might break down.
As I read Julie’s post, my own thoughts expanded on the story:
I pictured cars humming along on the highway with little to no cares. These are well maitained, efficient, reliable vehicles – even high performing ones. I picture people – not myself ever – care free, oblivious to what could have been or what could be. They are strapped in safely and out for a ride where they know the destination, the route and how long it should take. (I find it interesting that I can’t picture myself this way. I wonder if I ever could have – and thinking about it a moment, I think I could and did. I haven’t felt that way for some time – in control. I know now that I can never go back. Carefree, innocence, naiveté are no longer mine to enjoy).
Then, I picutre less reliable cars on bumpier roads (like Julie described- potholes, gravel, maybe narrow and winding – some steep climbs). These were the cars that were older, maybe not as well maintained – or requiring more maintenance. I had my grandfathers car in my mid-20s. Second hand following an accident with a dump trunk. Hole in the floor. Crack in the motor. This care would die on the highway with no notice. I once coasted to an off ramp when I lost all power. I feel stressed, frustrated, a bit angry at the damn car (arrrggghh!)
Then I picture dusty, abandoned, forlorn roads with not a traveler in site. The car is a broken down ‘clunker’ and you worry that at any moment it will break down – and then you wonder how you will ever get to your destination. The visual that comes to mind is the desert, and long abandoned roads. What I am doing in the desert, or how I got there, I can’t tell you. But I am there and I have no idea where I am going, where the next gas station is, or how far my car will get me. I feel a sensation of anxiety, fear, desperation.
Then I picture a band of weary travellers – backpacks on their backs – limping along – but still managing to help one another. Thirsty, tired, downright weary – and still putting one foot in front of the other. Forget the car, this is a bedraggled post-apocolyptic group, who are simply in survival mode. As the image comes to mind for me – I recognize this place. I have been here, more than once. Trying to survive, trying to get through each moment, worried about what the day would bring. I feel bone weary but strangely strong. I can put one foot in front of the other. I am too tired to worry, my energy has to be focussed on moving forward and enduring. I am concious of those around me – and they feel me as well – but we cannot string together a word to speak to one another. Our simple presence at each others side has to be enough.
Please visit Julie’s blog at What I Would Tell You. She’s a powerful mom, and writer.
Julie (the other Julie)
My world with Kate is both small and huge at the same time. Kate doesn’t have many friends, she doesn’t go on regular ‘playdates’ or off to activities on her own – instead she goes to school where she mainly works one on one with adults, she has therapy with myself and adults, she has a respite worker, and she visits the hospital to be poked, prodded, examined, and intervened with. She spends a lot of her life waiting, being touched by others, being pushed in therapy, and waiting while I have dicussions about her with all of these people.
Because of Kate my world is complex and requires quick thinking, advocacy, patience, ability to communicate in many ‘languages’ (medical, therapeutic, educational etc.) – even to learn a new language (American Sign Language).
I take advantage of every opportunity to engage with the adults in her life be they medical case conferences about her, clinic appointments with one of her 15 different specialists, phone conversations with consulting medical specialists from around the world, scheduled therapy sessions, scheduled educational meetings (with teachers, EAs, LSTs, principal, Board representatives, placement and review committees), discussions about community therapeutic care, or even conversations with our local community centre to place her in a basic preschool swim program. Nothing in Kate’s life follows typical procedures or processes. Nothing is easy.
But sometimes what I find most advantageous are the unanticipated and unplanned ‘hallway meetings’.
Yesterday, I had to walk the length of CHEO from Kate’s afternoon auditory verbal therapy session to another wing of the hospital to sign paperwork from metabolics/genetics, and then head to the cafeteria for a casual meeting with CHEO public relations (more on the purpose of that meeting next week). In the course of that short walk, I met Dr.P (Kate’s metabolic/genetics physician) and we had a brief chat about Kate, how she is doing, recent symptoms, our planned meeting next week – then I ran into one of Kate’s formal social workers at CHEO from the neurology department (we are now with palliative care social work at Rogers House), we talked about Kate, how much she has grown, her diagnosis, how she’s feeling etc. Finally, I reached my first destination and signed the required paperwork, and went to the cafeteria for my meeting. As we sat down, Linda the cafeteria lady came over to say hello – Linda is a kitchen worker at CHEO who has a Deaf daughter and she knows ASL. She has struck up a little friendship with Kate and always comes over to say hello, asks how Kate is doing etc. I finished my meeting and made a quick errand up to the clinic area of CHEO where I ran into 2 of my favorite phlebotomists – these ladies can get blood like nobody’s business – they asked how Kate was doing and asked if they would be seeing her soon. When I arrived at my clinic destination, I ran into Dr.Major, Kate’s complex care pediatrician who we are overdue to have a clinic appointment with. She asked how Kate was doing, recent symptoms, how did our TO visit go, asked me to follow up about scheduling a clinic visit with her etc.
Without going on…I think you get the picture. Hallway conversations as spontaneous as they are, can be very effective.
- I got to touch base with Kate’s metabolic/genetic doctor about how Kate was doing (he hadn’t seen her in several months). We discussed the current research going into Kate’s disease. We touched base about a meeting he would be having about Kate with her doctors at Sick Kids. And we planned to have a clinic visit.
- I got to touch base with Kate’s complex care physician at CHEO, briefly mention some concerns about Kate and planned to make an appointment as soon as possible with her.
Effective and efficient.
Today, I had a very similar experience at Kate’s school. As they are getting used to Kate, and we are getting used to them getting used to Kate, there have a been a few hiccups along the way. The latest hiccup has caused a lot of stress in this house for the past 72 hours. I didn’t have time to meet today, but I let the principal know as I entered the school that I would like to meet. I walked Kate to class and ran into the principal in the hallway – and there we had an unplanned ‘hallway meeting’, and I think we got much more done than any other scheduled meeting I have had at Kate’s school. We were efficient (because it was unplanned and we both had places to be), it was effective (a credit to both of us), and because it was impromptu (not to say I hadn’t been giving things a lot of thought) the filters were off and I feel like we were very upfront with one another. We agreed to follow up ‘in clinic’ (i.e. her office with the other educational professionals involved with Kate).
I left feeling better. A hallway conversation can do that.