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?)

Moment to Moment

Disclaimer: Hoping this post reads well. The neurons are not firing on all cylinders these days.

Something happens when Kate has an acute episode of illness related to her mitochondrial disease. Life seems to slow down immensely and takes on a very focussed purpose. The analogy of ‘putting on foot in front of the other’ is the best I can use to describe the sensation. Managing her through each moment of her vomiting – cleaning her off, changing her bed, taking sheets, towels, pyjamas to the laundry room, administering meds (and deciding which ones to give), trying to settle her and repeating it all again throughout the night and into the next day. Each of those steps is a moment. Eventually deciding we need to go to CHEO for care and treatment, and absorbing that decision – that we make so often – and the implications and the stress that it brings with it – it becomes another moment. I pack her bag like I have done so often before. I cancel the week of appointments for the entire family, I call school, I cancel therapy, I cancel personal plans like the long awaited visit to the hairdresser or dentist.  I call into work and tell them I won’t be in.

Everything that is not about this moment of Kate being sick is no longer relevant. And then I dive into the world of acute illness and supporting Kate. I turn inward and rally my strength, contain my tears, and help her get through yet another round of bloodwork, procedures, and IV pokes. I sit with her and stroke her face or hold her and rock her just being in the moment. Our medical team comes and goes, our social worker, a therapist, another CHEO friend may stop by – they help to give a brief reprieve from the moment – and then the focus is back to Kate.

Those first few days when she is acutely unwell she sleeps most of the day. We are usually in a room with no windows. I turn the lights off to let her rest. It is like a cocoon and any sense of what I should be doing that day falls away as I watch her sleep. Over a few days she starts to feel better and then managing a little girl who wants out of the hospital, but still needs to be there, becomes my moment. Minute to minute, builds into hours of entertaining her and keeping her in her bed – maybe breaking things up with a walk and some visiting to the snack shop or cafeteria. The routine is usually the same. Then we get home, and life still does not return to normal because Kate is still recovering and not feeling like herself. Crying, whining, a need for constant attention become the new routine. My six year old who is more like a 3 year old. Carrying her because she wants to be held. Constantly waking at night for comfort or because she cannot sleep due to some sort of unidentified discomfort that she cannot tell me about. But the act of living in the moment cannot be sustained forever, and though she is still unwell and needing care and attention, life slowly starts to creep back in and the pace steps up. All those things that were set aside now return immediate attention. Not little things like the hairdresser and a coffee date with a friend that were cancelled, big things like the urgent priority at work, medical appointments for Kate, banking and taxes, booking summer camps, commitments made that were delayed, groceries. It doesn’t matter that I am exhausted, that I haven’t slept, that my child is still not well. Life has to start back up and demands my attention.


Out of Order

Coming back from the month of February has been an act of floating and sinking at the same time for me. Kate was steadily unwell from early December and undergoing regular tests investigating what was going on with her. February resulted in two typical childhood illnesses, a mild stomach flu and a common cold, that landed Kate in CHEO and caused her to be very unwell. The month was spent in and out of hospital, and sleepless due to constant care day and night. I started floating, living in the moment of caring for her – which is the only way it can be done. At the same time, I was sinking as responsibilities piled up that I did not have either the time or energy to address. Once Kate was home and feeling better, I thought I should set aside the time in the evening to catch up, but found I simply couldn’t focus because I was so tired. My brain is simply tired and thinking through the tasks of my ‘other job’ having just arrived home from work feels impossible.  The effect of fatigue is profound. I sink and the pile builds. Kate has pulled me into a pattern of not sleeping, so sugar and caffeine have become my companions struggling to find the energy I need wherever I can find it. I get done in my day what I must, and sometimes I get done what I need to do to get by. I start considering what responsibilities I can set aside.

What I know I need, I cannot figure out how to get. Respite, time from Kate to catch up on our life, to feel settled again, to get into a routine again so that I can catch up on my rest. The resources for respite are slim, and often already booked. Rogers House has been an amazing resource for us, but I don’t leave Kate there when she is unwell. I don’t feel it is fair to her when she needs us.  In fact, I did book Kate at Rogers House this weekend and was so looking forward to it, but we were bumped for an emergency admission. My heart sank.

There is a great motivator for me to get back to a better state, and that is Kate. This disease is endless and it is relentless, and above all it is predictable to the point that we know she will be sick again and soon, we just don’t know when. Our family has lived with SIFD for six and half years. It hasn’t changed, it hasn’t been cured, it is not something Kate will grow out of (my least favorite question). It is with us, it is part of our life and implicates itself into any and all of our plans. I have to find a way to deal with the sinking and the floating. I don’t think the answer can be living in the moment. I think it needs to be planned and systematic and disciplined – but how do that amidst the exhaustion and the sinking/floating feeling. Sometimes you are just to tired to know what you need.

I can see how long term caregiving wears on families and on individuals. I worry about that for me. The comment ‘I don’t know how they do it’ comes to mind, but I already know the answer to it, ‘Because you have to’.  It has been six years, what will the next six look like for me? I know I need a better plan.

How will I deal with constant trauma and stress that comes with parenting and loving a child with an ultra-rare disease which will likely take her from me?

Is it really just a matter of moving from moment to moment.




Home Alone

This is my Facebook post from 3 minutes ago:

“Sitting here (still sweaty – haven’t showered yet post run). Have finished my outdoor winter urns and am now sitting down to write a blog post. I feel chilly and though I’m not a coffee drinker, what I wouldn’t give for a warm latte right now.
(Wish I knew how to use our old and decrepit coffee maker. Then again, we probably don’t even have coffee in the house. Sigh.)”

Those of you who know Kate and who are special needs parents yourselves probably stopped at the first sentence, ‘What, she’s sitting down during Kate’s waking hours?!’

Yes I am. And the reason is that Kate is not here. She’s having a weekend sleepover!

About 6 months ago we finally said yes to the team at Rogers House who have been offering support to our family for years. Kate has been supported by the palliative care team at CHEO since she was 15 months – they were the first step to improving Kate’s coordination of care. When Kate was 18 months old, we had our first stay at Rogers House post admission. Kate was still not well enough to be home and we wanted to see how respite would work for our family. On that first stay I wouldn’t leave Kate. Instead our entire family moved into Rogers House for that Mother’s Day weekend. I can’t say it was ideal. I wanted to be home. But what it did do was give us a glimpse into what ‘the House’ was all about and the care the children received there.

Kate did not return to Rogers House until she was 5 1/2 (this past summer). I am stubborn and I am highly protective of Kate. I am also fiercely independent – with a (sometimes misplaced) CAN DO attitude. It’s not easy or natural for me to ask for or accept help. I really have to be coaxed (coerced?) into it.

I also did not want to leave Kate. I have never left her alone at CHEO. I could not imagine leaving her overnight anywhere – let alone for a couple of days. That has never happened with anyone – with the exception of evening babysitters. I felt worried she wouldn’t be safe, that her ability to express her needs – being so limited – would put her at risk, that she would be sad and upset – which wasn’t necessary (I didn’t need a break that bad I would tell myself).

I also felt guilty.

Kate is unwell so often, when she is well I feel like I should be spending every moment with her. I should be maximizing that time and doing memorable family things – or mommy daughter things with her. I shouldn’t be sending her off somewhere so that I can have a break. But I felt a tug of war of wanting to be with her and needing a much needed break from her. Guilt.

So when I do say yes to help, I’ve come to realize it’s when I am totally worn down. Last year Kate’s health was pretty unstable. Her mitochondrial disease is unpredictable and as much as we can string together periods of wellness (touch wood), we also have months of Kate being very unwell. Kate was hospitalized in September, October, November, January, March, and May of 2012 and 2013, and the in between at home wasn’t great. By June I was ready to say yes to someone.

It was hard the first time. Very emotional for me. I stayed for the first day and played and ate with Kate. I met the closely knit nursing team (I already know all of the palliative care doctors). I met the volunteer staff who prepare meals, play with the children, rock them, take them outdoors to play, and greet them at the front door. I met Kat, the amazing child play coordinator whom Kate has come to adore. It never ceases to amaze me at these young (20 something) women who have such incredible empathy, strength and love for our kids. I debriefed the team on Kate – medications she was taking – her likes – her dislikes – what she eats and how often (all the time)- how she might be trying to communicate something to them (a cry means this, a scream means that, this sound means she wants crackers, this sign means she wants to play) – we talked about bath time and bedtime – and how her bed should be set up so she wouldn’t fall out. I told them what an episode looks like and that if Kate had any distress that I was to be called right away. And I trusted that they would.

And then I left her – and I cried on the way home – and I missed her as soon as I left her. I called to check in 2-3 times that first stay. It was an overnight. I couldn’t wait to go and pick her up the next morning. I slowly realized that was more for my comfort than hers. She was fine. The staff at Rogers House are incredible. It truly is a home, and she is treated like a princess. She truly enjoys going and staying there. And after that first stay, our social worker said to me, ‘Ok, let’s book her next one.’ (Carol – never lets me off the hook).

Cooking a cake in the Rogers House kitchen.

Cooking a cake in the Rogers House kitchen.


‘Helping to clean’ at Rogers House. (Yes, I questioned this picture too!)

Kate at RH

Simply hanging out at Rogers House.


We decided as a team – Kate’s team – that keeping her familiar with the House and the routine of going there – would be good for Kate. Kate thrives when she has familiar situations, and if we kept our visits to ‘just when we need them’, the time between visits might be too long and would mean needing to get Kate familiar all over again. (I am beginning to think now this was just a ploy to be sure I stuck with the ‘program’ of getting support and respite time. I am grateful for it.)

Kate has visited Rogers House 4 times now. She is currently on her 5th stay. The team is so excited when they know she is coming. They plan around her. They know she is very active and requires full time supervision, so they plan their volunteers and try to be sure Kat is working. They keep her nurse(s) consistent so that Kate has someone familiar putting her to bed. They adjust to new routines and schedules and to how well Kate is feeling. They know her and they adore her. She is part of their family now. I think this was part of the purpose. Extending Kate’s family – getting her to know her palliative care team more intimately so that she can lean on them and rely on them. I have come to realize in these few short months that Kate needs this. She needs more support than Brian or I can give her. And that support needs to be special – as much as friends and family support her – she needs that CHEO/Rogers House support as she copes with and lives with her disease. When she is admitted to CHEO, hooked up to IV, feeling terrible, she needs to be able to have a visit from Kat and have her eyes light up. She needs Kat to know that she loves stickers and books and Dora – and trust that Kat will bring those to her and play with her and support her. She needs that extended ‘family’.

So I am grateful that I was pushed to accept this. I didn’t want my child to need Rogers House, or to need the care they provide. I don’t want to think of Kate as requiring palliative care. It’s still very hard for me. I didn’t feel like we belonged there. But I realize, Kate is not sick when she’s at Rogers House. She’s sick at CHEO. Rogers House is there to support her throughout her disease – and to support us.

So I am sitting in a quiet house – and it is hard the first 24 hours. When Kate is home, either Brian or I are ‘on’. There is no downtime with Kate, or time when she doesn’t need us – or demand us. There has been little rest between her hospitalizations and time when she is unwell at home. But it is hard to settle into the quiet. I am still not skilled at going to bed on time or getting a good night’s sleep when she is not here. I miss her terribly, and listen for her at night, even though I am grateful for the break. So far we have had Kate stay for 48 hours (2 night, 2 days). The first day I want her home, and by the second day I am ready for her to stay longer.

So far we have stayed home during her visits. This time I am actually home alone (which is so nice). The nurses always ask me what I did with my time when I arrive to pick Kate up. ‘Nothing really – I cleaned, organized, did errands, worked on my to do list’, I reply. They are disappointed, they want me to go for a manicure or pedicure or massage or spa day. But honestly, I feel relaxed by getting things done that I can’t do as efficiently with Kate here. I am starting to plan what weekends without Kate might look like and less focussed on missing her. I think eventually, Brian and I might try a weekend away together during one of Kate’s stays. Apparently that is something couples do. 🙂

For now, I am happy to have the time and space to breathe and exhale.


Girls Weekend

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.

Kate and Julie

Kate and Julie

slow down mummy, there is no need to rush,
slow down mummy, what is all the fuss?
slow down mummy, make yourself a cup of tea.
slow down mummy, come spend some time with me.
slow down mummy, let’s pull boots on for a walk,
let’s kick at piles of leaves, and smile and laugh and talk.
slow down mummy, you look ever so tired,
come sit and snuggle under the duvet, and rest with me a while.
slow down mummy, those dirty dishes can wait,
slow down mummy, let’s have some fun – bake a cake!
slow down mummy, I know you work a lot,
but sometimes mummy, it’s nice when you just stop.
sit with me a minute,
and listen to my day,
spend a cherished moment,
because my childhood won’t stay!
~ R. Knight


Kate’s Story – Fall 2009

So I am getting back to recounting Kate’s story to date. Here is the last post written a few months ago if you want to catch up on where I had left off.

September 2009

Kate was admitted to hospital over the Labour Day weekend for severe dehydration due to cyclical vomiting and metabolic instability. She had started another episode as she typically has…fussy and irritable, refusing to eat or drink for a couple of days. Sleepless and crying constantly at night. Within a couple of days she started vomiting and we knew that we needed to take her to the hospital.

The emergency department was getting more efficient at triaging Kate and understanding that she had to be seen quickly, but also that she was very unpredictable and her status could change very quickly. After the large medical team meeting about Kate in the late spring of 2009 – following her PICU admission – her neurologist had written a letter giving some instruction as to how Kate should be managed when she presented at the emergency department based on previous experience. We had asked all the doctors in the room to compose such a letter. None offered as they all felt they could not accurately describe the entire medical complexity of Kate (ah coordination of care). Dr.D finally agreed after we tearfully explained the frustration of trying to get through the emergency department experience with Kate. The letter helped significantly with mobilizing the ER doctors and limited the ‘starting from scratch’ frustration that we were face with each time we walked through the emergency room doors.

The ER attending also paged Dr.C from metabolics who was keen to stay on top of Kate’s metabolic profile when she was acute with one of her episodes. One particular investigation was into porphobilinogen which would indicate the possibility of acute intermittent porphyria (which was a suspected condition). The test was negative, but would have to be repeated again during the next episode (porphyria has since been ruled out).

Kate’s admission was short in duration, and I would venture to say this episode was severe but seemed to resolve well and within a short time. Palliative care offered for Kate to transition to Rogers House for respite before she went home, but we just wanted to take her home.

As I think back to those days…to the first 3 years of Kate’s life…I can’t honestly understand how we did it. Our days were spent often with an unwell, lethargic and irritable toddler. She wanted to be rocked or held constantly, and for some reason her preferred position was on my right shoulder while standing. If I sat to rock her she would fuss and whine as if she was uncomfortable, so I spent hour after hour rocking her in my arms while standing. When she finally fell asleep I would sit in a chair and rock some more.

For the first three years of Kate’s life she did not sleep more than 2-3 hours at a time. She would wake and cry and fuss. She would sometimes settled after 20-30 minutes, or she would continue to fuss and whine. I would get up with her most of the time as Brian was working the next day, but I have to admit there were nights where I pretended not to hear her, and knowing he would get up (he couldn’t let her cry). We were exhausted beyond imagining. What most parents went through for the first few months with a newborn or infant, we were going through for years. And somehow we plowed through – because we had no choice. I can remember the night before Kate went to the intensive care unit for severe dehydration. I listened to her cry all night too exhausted to get up one more time. I listened to her dry heave and cry, too exhausted to know what to do or to think clearly. Man those were dark days.

The cycle of episodes were long. There was the decline – usually 3-5 days, the inevitable hospitalization of 3-7 days, and then home for 2+ weeks of recovering. During this time Kate was very high needs, not eating or drinking, lethargic, irritable, constantly crying. There was no break – for her or for us, and I was absolutely concerned about her quality of life and her future. We had to do something.

Slowly we were introduced to social work at CHEO and there was some hope that we might get some form of financial support or relief since I was now beyond my maternity leave and we were down to one income. Government applications for assistance were daunting and detailed and I did not have the stamina to sit down and work on them alone. Family support was non-existent other than when my mom would fly up when we were in crisis – but ongoing support and short periods of respite did not exist for us.  We knew we needed help and we were scared at the fact that there was really nothing for us or Kate. I started to wonder how long we would both last at this pace and intensity.

After Kate’s Labour Day admission, we were sent yet again to meet with a dietician about Kate’s GI issues. Reflux (GERD) was still an issue for Kate and constipation was a chronic problem that sounds less than serious, but can cause a lot of problems for a young child. There was also concern about Kate’s size and weight – she was off the charts small and she had lost weight instead of gained it in recent months. We were managing the constipation with medication, but it was not doing a great job. We were also looking at supplementation for her diet – but when a toddler doesn’t want to eat, it really doesn’t matter what you try to introduce to them. In fact new food/supplements when a child is ‘off’ their diet or eating habits are not very well received. The dietician also asked us to restart a detailed food journal for Kate. We added this to our ‘to do’ list.

Conversations started happening about testing Kate for Crohn’s disease, Celiac and/or Colitis (all of which have since been negative) and as we prepared to go to the Mayo Clinic in October, we added GI (gastroentorology) to the list of specialists to consult with. Our concern was that we were stuck on symptom management or reacting to each crisis and not addressing the cause.  Our neurologist and GI doctor had wanted to start Kate on a new medication called Flunarizine, another neurological blocker aimed at abating her episodes. We were skeptical, but in asking for help it is hard to say no when a medication is recommended. GI was also wanting to restart Prevacid for GERD – though we had found no difference with her off of the medication.  You ask for help, you have to take it when it is offered…no? GI was also interested in doing an upper GI endoscopy on Kate and taking biopsies. The goal was to assess the reflux , look for inflammation, ulcers, gastritis, esophagitis and eosinophilic, and examine Kate structurally. We were unsure about this invasive test that required yet another anesthetic, and were beginning to express concern about the direction GI was taking with Kate. Our parent intuition was beginning to give us a sense that this was much more than GERD (reflux) and that something else was complicating it.

We were anxious for more. We wanted answers or a new direction for Kate’s care. We started preparing for our visit to the Mayo Clinic.