Kate’s Bone Marrow Transplant

Yesterday, Monday, February 16th Kate was to be admitted to the Centre Universitaire Hospitalier Ste.Justine (Ste.Justine) in Montreal for conditioning therapy in preparation for an allogeneic stem cell transplant. A bone marrow transplant (BMT) on February 23rd with her 10 year old brother Jack as the donor.

Remember my last post about decision making. This is the decision that has been made. It is the biggest decision of our life and it has been incredibly difficult to make.

I am writing this, and we are not at Ste.Justine. Kate’s BMT has been delayed due to unforeseen medical complications. It might be a good thing as the Ste.Justine team gets better prepared for her and the medical complexities that surround her. BMT is never straight forward, but for Kate is it even more complex. The protocol ‘checklist’ has to be edited and designed to be specific to her medical complexity. We don’t have a new date yet, but this breathing room has allowed me to write this post and to share some information about this journey.




Where it began…

Many of you who follow this blog, or who have visited Kate’s CaringBridge site know the history of her diagnostic odyssey, medical journey, and her ‘status’ as the first child diagnosed in the world with a rare form of mitochondrial disease called SIFD.

Once the discovery of SIFD occurred a small group of children were identified who were diagnosed with the same recessive genetic disease – about 15. Many of those children were diagnosed posthumously. But one child who was alive was doing very well, and was not suffering from any of the complex medical conditions the other children with SIFD were suffering from. That child had had such acute presentation of SIFD at age 9 months (specifically the sideroblastic anemia and inflammatory cascades), that he had received a ‘hail mary’ bone marrow transplant. And it worked. He has not suffered any further episodes, and is the only known case with SIFD who has developed neuro-typically.

And so began the conversation with us two years ago about considering a bone marrow transplant for Kate.


Imperfect information…

So we don’t have perfect information about the impact of a bone marrow transplant for Kate. We do know that to date 4 children have been transplanted worlwide for SIFD. 2 have survived and are doing well – with no further episodes, and 2 have sadly passed away as a result of the procedure.

We know that the BMT would stop the episodes Kate is having, it would cure her sideroblastic anemia and it should prevent further damage from the disease. But this latter aspect of the BMT result is not clear. Kate’s brain, heart, kidney and liver could still be impacted further post-BMT.

We expect a better quality of life for Kate post-BMT, but getting there will require a significant amount of sacrifice and suffering on her part. A bone marrow transplant is not an easy thing to go through. It is considered one of the most invasive and difficult procedures in medical practice. We don’t know if she will get through it (5-10% chance of mortality), or if there will be unforeseen consequences because of the bone marrow transplant (5%).

We do know, based on the ever-changing information and insight we have into SIFD, that without intervention, these children tend to die before they reach adulthood. They suffer a ‘catastrophic event’ characterized by an acute onset cardiac condition (cardiomyopathy) or an acute episode of inflammatory cascade that presents like an idiopathic septicaemia.

SIFD is progressive and it is degenerative. There is no escaping that.

What we don’t have is the crystal ball to tell us when this might happen.

We have been given a choice – and our medical team feels that the BMT is the best course of action to pursue. Our other choice is to live with SIFD and take our chances on Kate dying from this disease.


What is a bone marrow transplant…

There are a ton of websites dedicated to BMT. The one I like best is www.bmtinfonet.org


Jack’s role…

In an allogeneic stem cell transplant, a donor is required. Typically the donor is sought out from within the persons immediate family as a relative can offer a better ‘match’ and the better/stronger the match the less risks there are with the transplant. Sibling matches are considered the best.
Neither Brian or I are a match.
Jack is a perfect match for his sister. A 6/6 sibling match.

We are grateful that Jack has agreed to take on this role for his sister. He understands that his body is strong and he has something he can share that might help Kate. His first reaction was that he might end up with a ‘clone’ sister (pretty funny). We’ve described the process to him. The surgery he will undergo. How he will feel, and the impact it will have on him and his activities. As is his nature, he has accepted this role with little drama.

He is not a hero, but he is very brave.

I wouldn’t have expected anything different from Jack. He is an incredible boy and one of Kate’s greatest champions.



I am lucky to have two incredible children. While Jack is brave, kind and empathetic, his sister is courageous, stoic, strong, loving and TOUGH. AS NAILS. She is a survivor. And she is one of the happiest people I know despite it all.

Kate will require 5-7 days of intensive ‘conditioning’ before receiving the transplant. To quote one of her doctors, they need to bring her to the brink of death and then bring her back again. Her intensive chemotherapy is needed to kill off all of her bone marrow to prepare her body to receive the transplant from Jack’s body.

The chemotherapy will be introduced through a central venous line (Broviac) that is inserted into a large vein above Kate’s heart. Because of the multiple blood draws, the infusion of chemo, medications, and the blood transfusions Kate will require, a central line is required to easily access Kate for these procedures.

Once Kate has finished the conditioning regimen (days -10 to 0), she will receive the transplant. This is a minor event I am told, but an emotional one, as the stem cells collected from Jack’s bone marrow are infused via an IV bag into Kate’s central line. The stem cells then find their way to the bone marrow space and start to set up shop.

Day 0 – Day 7 Are supposedly the most difficult. Kate will be very sick from the effects of the chemotherapy drugs and immunosuppression drugs. She will be on full isolation for close to 8 weeks. I can be with her, but will need to be gowned, masked and gloved at all times. Access to her and her room will be highly restricted.

Kate will lose her hair, she will have nausea, vomiting and diarrhoea, she will have sores in her mouth. The BMT team is ready to support her through all of it, and prepared to deal with any unforeseen issues that might come up.

Day 7 – Day 40 will be a period of waiting for engraftment – waiting for Jack’s bone marrow to take over and start to grow in place of Kate’s. Graft Versus Host Disease and rejection of the transplant are the risks during this time – as well as organ failure, bleeds, and infection. Kate will still be feeling unwell and recovering from the conditioning regimen and the transplant.

After 2 months – If all goes well and Kate is stable, she will be discharged to home. The first 6 months will be critical as wait for Kate’s T-cells to show themselves again. Until that time, Kate will have no functioning immune system and will need to be in isolation at home. Her nutrition and her hygiene and protection from any mold, disease, or illness are extremely important. A  common cold could be devastating. She will be required to wear a mask when she leaves the house and she will travel to Montreal and CHEO weekly for medications, assessment, medical management and follow up. We won’t be allowed any visitors into our home at that time.

Post 6 month – If all goes well, we expect Kate to be able to return to school and other activities. She will continue to be on several medications as her new immune system grows and gets stronger in her body, and she will be monitored closely. It will take at least 2 years for Kate to have a fully functioning immune system.


The Plan…

We are currently waiting for a new date for Kate’s BMT. Her bloodwork was poor last week and a surgery to install her Broviac could not go forward.

We are mobilizing friends and family to help us while Kate and I are in Montreal. We are grateful my parents have moved here for a few months to support us.

It is not clear what we need right now while in Montreal or when we are discharged to home, but we will be sure to ask as support will be welcome and much needed.


The path ahead…

It has not been an easy journey – these past 7 years. Having a child that is living with a long term chronic and acute illness that is ultra-rare has changed me / us / our family in ways many people could not even imagine.

Kate’s life, her journey, her diagnosis, have changed the lives of others.

That in and of itself is incredible. So much power and awesomeness that this little girl has brought to the world.

So the journey continues. And Kate will be awesome again. And she will help others to learn, and to live better lives and to not be devastated from the ravages of this disease.

That is not a gift I would be willing to give on Kate’s shoulders, but it is our reality. It is her reality.


I am grateful to the incredible medical team we have at CHEO and Rogers House, and for their guidance in this decision.

I am grateful to the team at Ste.Justine, and the international SIFD team for all the preparation they have done for Kate.

I am grateful to all of you who are following our story here, on CaringBridge, on Facebook and Twitter.


Life is hard – there is no doubt. And others have it harder – some easier. This is our place in life and we are challenged with making the best of it and living it the best we can and with as much ferocity and compassion as we can.

Go Kate Go! 




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





The Art of Imperfect Decision Making

A Recipe for Making Decisions

How to make an impossible decision in 7 easy steps 



Information and Research

Gathering of knowledge from ‘the experts and specialists’




Weighing of Opinion


Evaluation of information


Gut Instinct




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.



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. 

Anniversary Weekend – Part 1

Still waiting for our SIFD party

Still waiting for our SIFD party


Today is the anniversary of Kate’s diagnosis.

It’s hard to believe that three years ago today we sat in the office of Dr.C (you can read about Meeting Dr.C here) our metabolics and genetics doctor and learned that Kate has a new and ultra-rare recessive genetic disease that she inherited from Brian and I. It reminds me a lot of this article by Matthew Might, dad to a son who also has an ultra-rare disease and was also an N=1 (as I wrote about here).

To quote Matt Might:

If found my daughter’s killer.

It took over 4 years.

But we did it.

I should point out one thing. My daughter is still alive. 

Yet. My husband Brian and I have been found responsible for her death.


When we were told that they had diagnosed Kate, there was a moment for me – just a brief moment when I received the call to come in for a meeting with Dr.C to discuss our test results, that maybe there was something they could do for her. A moment of excitement (?)… No. That’s not the right word. HOPE.

The moment did not last. As Dr.C talked about genes and exome-genetic sequencing and recessive genetic this and that. I listened. But I didn’t at the same time. I knew that if they could do something for Kate. If this was something ‘common’ or least ‘known’. If the medical team could help her – they would start with that.

They didn’t.

We looked at graphs. We looked at stains of Kate’s actual genetic coding for the TRNT1 gene. We talked about genetic condons of GCT –  GAT – ATC and any other combination of those 64 triplets of nucleotides that make up our genetic code.

And then, Dr.C took a ‘picture’ of Kate’s TRNT1 gene profile and overlaid mine and the Brian’s. They matched. My heart fell into my stomach. I was trying to understand. Trying to nod my head in comprehension. Trying to be brave. Trying.

Kate has inherited the exact same mutation from Brian and I on the gene known as TRNT1.

It had never been seen before.

Our children had a 1 in 4 chance of inheriting this disease. A silent killer. Completely unknown.

Jack isn’t affected, but could be a carrier. We haven’t had him tested.

The mutation has caused a deficiency in the protein needed for this gene to do it’s job. That deficiency (variable) has caused an incredibly shocking cascade effect through Kate’s body – resulting in the multiple medical conditions and ongoing acute illnesses she suffers today.

To quote Dr.H (PhD), a researcher working on Kate’s disease. “It is hard to believe a deficiency on one gene could wreak so much havoc on the body”.


What We Know

Here we are, three years after our ‘diagnosis’ and here is what we know.

There are approximately 18 known cases of SIFD worldwide. After Kate was diagnosed, our brave Dr.C took a leap of faith and share the genetic findings with a physician he had been working with at Boston Children’s Hospital. Their collaboration led to the first cases being confirmed, and to the establishment of an international medical and research team that continues to work on SIFD to this day.
Their efforts have resulted in a paper that describes the condition of SIFD. You can read about it here:


A description of the TRNT1 gene deficiency that causes SIFD was recently published in the Journal Blood (September 2014).


Here is a picture of how the mitochondria are affected by TRNT1 deficiency – making SIFD a mitochondria disease. (I’m still trying to understand it too. Sigh.)



Many of the diagnosis of SIFD in the patients referenced in the article were done post-mortem. These children tend to die in early childhood – under the age of 4. They were identified and tested based on the cluster of symptoms they had presented with.

To my knowledge, there are 5 children alive today who are known to have SIFD. Four in the UK, and 1 in Canada. Kate.

I have recently been told of 2 more cases in the US and Brazil, but am not sure if these children are still alive.

The children have a variable severity of disease. Ranging from severe to mild. Kate is considered moderate. The children are treated with blood transfusions if their sideroblastic anemia is severe enough, immunogloblulin therapy to treat the b-cell immungloblulin deficiency, many have tried Kineret and prednisone to ‘treat’ or control the episodes of fever or inflammatory cascades (with differing degrees of efficacy), all are hospitalized regularly and monitored for cardiac myopathy – a severe and deadly effect of the disease, and inflammatory cascades (or Kate’s Episodes as we call them), which can also be life-threatning.

To date, 4 children have received a bone marrow transplant (BMT) to treat the disease and curb it’s course.

The first child done was a ‘hail mary’ as his sideroblastic anemia and periodic episodes were so severe his doctors had no other recourse. His BMT was done before SIFD was even discovered. He is doing very well. No effects from the disease.

The second child died during the BMT procedure. She was also very unwell.

The third child is also doing well and had less severe form of the disease. He is off of any intervening treatments and not experiencing any further episodes.

The fourth child was transplanted just recently (October 2014) and there is no information about his/her status.

BMT is an option for Kate. A terrible, awful, terrifying option – but an option nonetheless. It has been offered to us.

The CHEO Research Institute, Boston Children’s, and the Manchester, UK Children’s Hospital are all working on different features of the disease.

I call them regularly asking them if they are any closer to a cure. They are not. They are understanding the protein deficiency better – and all the mice they give it to die. They know what needs to be fixed, they just aren’t sure how to do it. I’ve offered to bring Kate for a visit – to create enthusiasm among the research team – to introduce them to the  little girl behind all of these incredible efforts – to expose them to the genuine JOY that is Kate.

There is nothing more motivating than wanting to help her.


My hope is that we find more children like Kate and the others and are able to learn from one another to help facilitate better management of the disease – share our stories – support our medical teams in finding a treatment or a cure.

I am looking for ways to do that.




Turtle Turtle

Turtle 1



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.


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