So much had changed in a year and so much remains painfully same.

As I sit here on a bright Halloween morning the pumpkins on our doorsteps remain intact. Tomas will wear his sloth costume tonight when we go for our daily evening walk. I will leave very little candy in a bowl at my doorstep, as I have given majority of it to the house on our street that fundraises for Crohn and Colitis Foundation.

Since last fall I have been greatly struggling with my mental well being. Winters are always tough on me, but since last fall my body started experiencing the effects of constant joint overuse. The endless muscle and joint pain are so ever present I no longer register them. After fighting my province’s social support system I received funding to hire a helper, for 3 hours a week. You moms out there know how little can be accomplished in 3 hours. But 3 is better than 0, so I must remain grateful. However thanks to our “double shitty luck” administrators felt sorry for us and accepted Tomas into a very exclusive club nobody longs to belong to, The Canuck Place Hospice.

This single institution has saved our family. Thanks to the respite stays they provide for children with complex needs my husband and I will have the 6 hours of me time we couldn’t dream of last year. Having a hope that you can experience 20 nights a year as a “regular person” is unimaginable luxury and the single ray of hope we survive on.

So yet again we are bracing ourselves for the dark months of painful reminders of the joy we lost and continue losing. But one thing becomes more and more clear to me. Personal growth never happens when life is “easy”. I have done way too much growing in the past three years. I never wanted to be this “inspiration in facing such a tragedy”, but here I’m. And as every post must end on a positive note I will give myself the proverbial pat on the back. I seldom acknowledge my victories but here we go

• founding member and secretary of CureGRIN Foundation
• successfully advocated for  better medical supplies for Tomas
• became Resource Parent for the BC Family institute
• found resources for a local family struggling with insufficient support from their medical team
• participated in 3 research projects, one of which already gave us better treatment options for Tomas
• stayed and kept alive, fed, cleaned and emotionally supported my family

Not shabby I’d say 😉

So dark months, here I’m, with my flashlight of eternal optimism and conscious denial, I’m ready to navigate the darkness.

We are no strangers to heartbreaking decisions. We made them under pressure and without involvement of emotions.

This time around we have all the time in world, in theory.

I used to like decisions, because it felt like I’m fixing things. What a naive illusion that was. All that fixing got us to about 100 seizures a day, very little improvement in vision, absolutely no developmental milestones and increasingly disorganized oral function. Eight months of trying medical cocktails, daily therapy and endless medical articles, emails, videoconferencing, research and participating in as many research projects as we could. All that has left us with nothing, waiting for results, waiting for appointments and procedures. I might be just experiencing a low point, weak moments, but it’s hard to stay positive when there is almost no feedback, no response, no improvement.

Imagine having a rag doll for a child. You still have to do everything like with a normal baby, but this doll doesn’t really move, smile back at you, reaches for you or interacts with its surrounding. It’s a lonely and unrewarding job making this doll do anything, teach it anything.

Parents of healthy or typicality developing children will never understand. Some days when I hear them going on and on about the “such a hard decisions” if they will vaccinate their child or give them Tylenol when they are teething. Some days it’s just too much and all I want to do is yell at them about “fucking no brainer, you can prevent your child from dying preventable death and protect other children who simply don’t have this luxury of choice. And you have a medication that can relieve your child’s pain with minuscule chance of harmful side effects!” Try this for a little perspective. You want to give your child something, anything to stop them from having almost constant seizures. But while you are trying to curb the seizures you can give them kidney and or liver damage. And loss of peripheral vision, reported in quarter of patients after prolonged use. How is that for a hard decision to make.

Now we are starting to face decisions that feel like mountains to climb. With the confirmation of constant silent aspiration we know that we are sitting on a time bomb. Aspiration pneumonia is a leading cause of pediatric death in patients with neurological impairment.

Until now Tomas is seen by strangers as a big sleepy baby. But his face is changing and he will no longer look like a baby soon. Until now he doesn’t look obviously disabled to passers by, but soon that will change. We live in a small town, after Sara’s passing we became “celebrities”, poster parents for the pity party. I still remember the paranoia of people talking about my family when grocery shopping. You enter the isle, two ladies are standing there, they give you quick look that kinda stops faster than usual and they start pretending to be really busy. If you catch a glimpse of them a minute later they are engaged in the intense conversation interrupted by the occasional sighs or hands touching face resembling the famous painting “Scream”. I hated that, but people’s memory is not like elephants’, they quickly move onto a new story. I’m dreading the new wave of pity party.

J already asked me the other day if I too get the feeling that people are nice to us, only because they feel sorry for us. It kinda made me think. Our “village” people are nice to us, because we are a community and we do things for each other and help each other. It’s two way street and I think people are nice to me because I’m nice to them, nothing more to it. Do they feel sorry for us? Yes, but that is not the sole reason for being nice to us, I’m not sure about the percentage of each of the reasons, I would hope for 80 nice and 20 pity. His next question was are we gonna get used to it and expect it? That one was easy, because I know I’m always surprised by people’s generosity and kindness and I will never take it for granted.

When it comes to kindness I’m still amazed how much of it comes to us from unexpected places. But I also know that when you seed kindness you reap kindness. To place a seed of kindness in soil to be nourished and cared for is a deliberate act. It requires a decision, decision to choose good. And maybe not just good, to choose to go one step further and choose great. I don’t meditate (I might but I certainly don’t call it that), but I’m getting better at beating my inner procrastinator. The little voice that says;” relax it has always somehow worked out”. Now days I shout back “because I have worked my ass off and found… to do…” I do good to feel good, so in this twisted sense I’m the most selfish person, because I want to make myself feel better. And I don’t want to deny this fact. I’m not saint, nor I want to be one. I’m just self absorbed human, just like all of us. Our pain is always the greatest from all people at the moment of suffering. Empathy is great, but it can only rise from the experience of our own deep pain, from processing it, from healing from it.

At the end every second of our life is a consequence of a decision we made, consciously or not. Whether I live life because of my active participation in the decision making process or not every new second can be the “point zero”. The reset button to try again play a new card game. The deck might be missing playing cards, just like our reality is missing our loved ones who are no longer with us, but you have to start the new game with the notion you can still somehow get the royal flush. I’m still playing, at the back of my mind I have secretly settled for full house. On the bad days I dread to come out empty handed. Then my insane inner optimist shouts across the room “Pair of two, wow, well played”, seriously at this point everyone else considers him pretty annoying. Most people suspect that he does this just to have the last word. You be the judge of that.

It’s early morning, my coffee is almost gone, my bath water is getting cold and I will walk out of this bathroom with the only thought possible. I have a pretty crappy incomplete deck of cards in my hand, those cards will get dealt no matter if I want to play or not. Whether I want to make the decision to play or not, this card game will continue playing. But I will make the decision I don’t want to make and play my hand. I will play it pretending there is a full, shiny brand new card deck being played in this round, and I will play it with the kind of energy and optimism that only active denial can give you. Because that is the only way, for me, to live through this endless game of poker called Life.

Sometimes it feels pointless to share my thoughts with people around us. Unless you have a child with complex medical needs you will never get it anyway.

But sharing allows me to temporarily lessen the burden I have to carry and that helps a lot.

We have been very fortunate in our miss fortune. We live in a country that provides our boy with excellent care without us going bankrupt, we have therapists provided by our province and we can borrow equipment that otherwise be out of our reach. At the same time we are facing a frightening future. Future full of decisions we don’t want to make, because the choices are between sucks less and sucks more and many of them are a just pretend choices handed to us by our “generous social support system”.

Until you have to deal with this system you live in the media portrayed picture. Where diversity is celebrated, special olympics have real companies as sponsors and evening news include some inspiring footage about overcoming setbacks. And then you land in “Holland instead of Italy” and your head starts spinning. You don’t know where to turn, so you run to your embassy for an advice. If you are lucky someone is there and allows you to make an appointment. You patiently wait for that hopeful meeting and you are thrilled to meet your ambassador. He is the first person who speaks your language and you get the feeling he really understands how you feel. His office is full of colorful brochures with happy children on the covers. You leave the meeting elevated, feeling like you can make it through living in this foreign place for the very first time, arms full of pretty leaflets. You even get a prepaid credit card to buy those rain coats and other gear that you surely didn’t expect to use during your planned stay in Italy. You feel overwhelmed with gratitude, proud to be Canadian.

Then you sit down and start reading. The brochures are written in a strange language full of “may, should, could”, but your euphoria quickly dismisses your doubts. You have the amazing prepaid card for those really unexpected purchases! The weather forecast calls for rain, so trip to get the rain gear is in order. The “Everything You Might Need For Living In Holland” store is just freaking amazing, so many helpful things to make your everyday living more bearable, almost normal one might say. You are conservative in your choices, nothing too fancy. You peaked at the price tags, but they are in a crazy currency you don’t understand the value of, plus the amount of zeros in each price you see is just too overwhelming anyway. The cashiers are not exactly helpful, but you suspect it’s a language barrier thing. The cash register dings and you present the clerk with your prepaid card. He swipes it, gives you a nervous smile and suggest you need another card to cover the outstanding balance. I will spare you the painfully embarrassing next 30 minutes in which you realize the prepaid card only pays for a single raincoat for your child, not the rain boots or the umbrella, let alone waterproof mittens, since it is so bloody cold in here all the time. You also suddenly remember what one of the brochures mentioned, you only get this prepaid card every five years. So the rain coat you are getting better fit your kid for five years, which is pretty impossible since he is only two, but he will be attending kindergarten in the same coat. Get your crystal ball out and pick the right size, because you only get one shot at this, returns or exchanges are freaking nightmare and require you to give them your coat for couple weeks and wait for the new one. It better not rain at that time, because you have no raincoat, just a colorful leaflet promising you one soon.

Your shock is complete when you realize the price is not some strange foreign currency, but your very own. I know back home the rain coat costs $50 maximum for a really decent one, but this is Holland and the rain coat has the label “for very special children”. That tag is etched in gold, for some reason, hence the price increase to $500. You shake your head in disbelief when a fellow shopper taps your shoulder. She has the “been there done that, you can go there too” attitude. She whispers to me that you can sometimes find a used coat at the very back of the store, in that corner that looked like employees only zone. She also pointed out that you might try traveling to the border town where there are stores for people from other countries and prices are similar to your home country, because they sell rain coats without golden tags.

Despite all this you do your very best to adjust to living in Holland. But you might start thinking about the future soon. You parental leave is ending and suddenly your family’s income is cut by 1/3, since you have to stay at home with your kid, because no daycare will take him, since he doesn’t speak Dutch. You know you are stuck, because there is no earthly way to teach him Dutch, even thou you so long for your child to learn at least some words, so he can have friends. For now he is sitting in his gold plated stroller in the corner of the playground only getting strange, sometimes curious looks from the locals. You used to be friendly and full of energy, but not any more. All the worries of where to find all the things you need for a decent life and how you can possibly pay for them since they all come with gold etched tags. All those worries sit on your shoulders. I started to sew my own clothes and refashion the clothes with the golden tag, so we can keep using them for as long as possible. I find myself hiding the golden tags sometimes to ease my husband’s burden, since he is the sole provider for our family.

We have been lucky lately. We’ve gotten money to pay for someone to help me deal with the unusual Dutch lifestyle, 6 hours a week, but that is more than zero. Also we visited a wonderful Dutch kid’s hotel and they gave us the option of our boy coming to stay for couple days so we can make day trips out of Holland. When I saw the envelope with the plane tickets I just couldn’t believe we would ever have a chance to leave Holland, ever.

I’m getting better at Dutch these days, I can have a very simple conversation about daily life and I can swear too. Unfortunately I still don’t seem to be able to remember the “big words” that government agencies use, but fellow parents, who landed in Holland just like us, showed me their little tricks and cue cards. This alone improved our life here tremendously. So thank you my fellow ladies living in Holland, you know who you are and you are a true inspiration. You amaze me how you found out about the ambassador’s secret stash of prepaid cards, how you made him sign important forms. I can only aspire to your detective skills and determination, so thank you Darlene and Bobbi, and the countless other. You make living in Holland an ok place to live.

 

How do you see the forest? You are not in it, simple…

But do you need to see the forest? Do we have to always know how our actions fit in the bigger picture? Is it truly possible to know the bigger picture?

Yup heavy post coming your way today friends.

We have been living on a very stormy emotional seas lately. Our little row boat has been picking up water and we don’t seem to be able to dump the water back out to the sea. I started to search for a life raft and referred our family to Canucks Place. We are visiting next week for the very first time. My preconceptions about this place will surely be shattered. I’m trying to imagine seeing families who have won the same “shitty lottery” as us. How do they deal with their load? I’m terrified of my emotions seeing the little light at the nurses’ station ( meaning a child is nearing the very end and calm and quiet atmosphere should be kept). I’m revisiting our final walk with Sara to the door of the surgery. You try to remember everything because,you know this moment will never be repeated, yet everything is so ordinary until you reach the empty room, gather your things, say goodbye to the nurses and leave the hospital in a haze of absolute emptiness. Just to arrive at home with the blanket Sara was sleeping on still on the floor and her purple house coat next to it. I don’t remember the weeks after, I truly don’t. I had trouble even with the simplest tasks, I had no short term memory, I was afraid to drive, because I wasn’t sure if I can concentrate enough. We survived them, only to be handed another sentence, this time not death, but a sentence for life. I remember the strange and awkward call the doctor gave me. She spelled the name of the mutation for me and asked if I’m ok. I said yes, because I really didn’t know what those four letters meant. I googled my first research paper and started to read the summary of my biggest fears. Seizures, no thank you 14 months ago I saw my first one and five days later I was holding my child’s death certificate, so no thank you. Blindness, the most horrific of disabilities in my own opinion. Severe physical and mental disability… really!? There is not much more that you can pile on us, apart from premature death, which is kinda open case, since sudden death in epilepsy is a leading cause of mortality in children with seizures…

All these moments, experiences are our trees, they make up our forest. I find myself actively nurturing certain trees, while almost abandoning a whole part of the forest, because it doesn’t “sparkle joy” being there. I’m not brave enough to actively set fire to those woods just yet. I know that burning would produce fertile ground for new forest, but I’m not good with matches. I’m leaving them out of sight out of mind and see if they sort themselves out. Because the beauty of our forests is that they grow and change with or without our involvement.

Fast forward a week later. We survived our first Canucks Place visit. It gave us hope that we can take “a breather” in the near future. Our social worker had secured respite funding for us for the next 12 months. That is all lovely, but it requires me to plan our year ahead with a skill of a destination wedding planner for a party of 250, where at least ten couples are required to be kept separately at all times and 100 people have “unusual dietary requirements”. I’m just a girl with GED and night school classes under my belt and suddenly I’m a head of booking, HR and CFO in one person. I should also have great interpersonal skills and degree in social sciences to conduct interviews to hire “a bit more than a babysitter” for our son. We also have some attempts for personalized medicine to attend to and three research groups and foundations to contact for possible clinical trials. I could book swimming lessons and spring break classes for our daughter. Every parent can do that within 30 minutes, but I find myself extremely overwhelmed by the demands suddenly placed upon my shoulders.

It feels like I was thrown into a tropical jungle. I’m ok with my temperate forest scene, I know the names of most of the trees, I can find north just by looking at the trees to orient myself. I can imagine what the forest looks like based of my previous experiences stepping out and seeing the horizon. But I’m standing in a jungle now, I’m sweating profusely in the wet heat. I can’t even see where one tree ends and the new one begins and the noise of creatures big and small living here is just overwhelming. How do you find your way in such a foreign place? Right now I’m just standing still, gathering information from my surroundings, petrified to move. One day this unpredictable jungle might feel like home, but it is way too unfamiliar now. Our complex needs life is only 18 months in, but I already shed many of my fears. That gives me hope that with little time I can figure out how to move in this jungle without falling down and hurting myself.

Do I need to know how big my jungle is? Do I need to know how many hills doesn’t it contain? No and no. Knowing I will walk this place 15 years have absolutely no effect on my speed, ability to enjoy or appreciate the jungle. You are either naturally a person who enjoys things or you are not. The whole BS about living your life as if today is the last day… I call BS, you can’t cram more experience into 24 hours, something is gotta give, your sleep, your food or your ability to just enjoy yourself. Anybody who claims otherwise obviously didn’t live through the last day, just like we did. Knowing how many hills you have to climb? Irrelevant because how do you know you don’t end up climbing the same hill ten times before realizing your error?

So knowing the forest doesn’t help you not to crack your head open walking into a tree.

Now excuse me, I think I see a flyer left by previous visitors with photos identifying poisonous insects. Time to get better acquainted with my new forest.

Long time no see, I know. It feels like nothing and so much is happening.

Recently I got back to podcasts, I guess driving 180km four days a week will do that to you.

I’m a believer in serendipity, in informations and people coming to your life in the right time. I found myself stepping out of my comfort zone. I don’t know if that is a conscious decision, but it is becoming a habit, a second nature. People talk about authenticity, I don’t care for that term, but I find myself attracted to people who are “real”. I’m seeking vulnerability.

In my quest to “I have no idea to where” I came across a wonderful podcast by Mark Hyman talking to Lisa Lampanelli. That interview is just full of inspiration, let’s just take the very simple but profound

“Things don’t happen to you, they happen for you…”

Sara dying happened for us… It is so easy to fall into victim hood, it is part of the grieving process, but it’s only a stepping stone, not a destination. It happened for us. It uprooted our lives, threw us into a great unknown. It gifted us new friends, new experiences, it gave my meaning and deeper understanding than I could have ever had.

Tomas’ disability happened for us… It uprooted our lives, threw us into a great unknown. It gifted us new friends, new experiences, it gave my meaning and deeper understanding than I could have ever had.

Lisa also talks about the three steps to building resilience.

Accept reality as it is

Take small actions towards happier life

Seal it with gratitude

I think I have the reality bit nailed down, almost too perfectly. I rarely sugar coat anything. My wonderful husband often tells me that I’m too European and can hide behind the ESL thing 🙂

I rarely pull out the ESL card. I mostly use it with medical professionals to pry more information out of them, to prolong the conversation in order to slip yet another question in for them to answer.

I’m not sure what the European thing is, but on my life journey I found that not saying things out loud the way they are is worse than euphemisms. Euphemism gives the recipient chance of interpretation based on way too many variables. It is merciful way to state the truth, but we need to think about whom is the mercy serving. It should always be the recipient and never us. Because if it’s us then where is the line between the merciful true and the white lie or straight out lie for that matter.

Take small actions towards happier life…

Wow, just six words to slice you right open with.

Take small actions… ok I do that all the time. Our life can be broken down into small actions. The problem is the rest of the statement… towards happier life. What is happier life? And before you get ready to answer remember that we already begun this journey by accepting reality. My happier life would have included skiing with my daughter, unfortunately I had to accept the reality and the only future I have will always include severely disabled boy. So what is a happier life with my boy? I start mentally running the list of things the happier life should have and quickly run out of options that I have any direct influence on.

Managed seizures… nice try, but there is only so many research papers you can read to suggest yet another treatment to our neurologist. So I’m stuck with fucking luck on this one and given our family’s track record of good luck, we are out of luck here.

Access to therapies he needs… that means money, either from the government or from us. Unfortunately both funding sources seem to be very limited. The fix is to win the lottery, which requires luck and given our family’s track record… yup out of luck here. To get any money from the government requires tenacity of a cage fighter plus the luck of being certain “ethnic backgrounds”, no luck here. Our family is from the wrong group of persecuted people (Jewish, as not to confuse you with euphemism). Mind you “the dead child” card seems to pull on the heart strings of some hard core government officials. But my conscience doesn’t let me play this card too often.

Having the equipment to make all our lives easier, at least on the physical level. That means money, either from the government… you get the idea. If not copy and paste the previous paragraph.

So there are my top three things for better life. I’m as lost as you are about the direction of the small steps. I’m a control freak, I used to be much more of one. I had to learn to allow for out of my control variables, but I can’t just “go with the flow”. Because even “going with the flow” can look like being swept by a fast running river, barely holding your head about the water, gasping for air. Or it can be me sitting in a kayak merrily floating down the stream.

To solve this fundament question I have to abandon all the most important things that matter to me and descend down to the things I can influence, that only I can influence.

Our happier life would have positive attitude towards everything, and I mean the awful, obnoxious positivity of a motivational speaker on a yoga retreat (please don’t be offended all you yoga enthusiasts, it’s just jealousy speaking here, I can never sit still with my thoughts). Small steps towards that are so simple, always choose the stairs of self improvement, choose the stairs, always, even thou climbing those steps require energy that you are not sure you have. Never go for the slide, the easy, effortless slide of victim hood. Even thou it has a rainbow and happy signs at the entrance the next curve takes you to the dark underbelly of the beast. Because getting out of there is bloody hard. Climbing the slippery slide back up is way harder than walking up the stairs, believe me, I have done it couple times.

If our happier life has positivity, it means it has joy, it has joy to give.

And giving joy and giving with joy is the last step. The sealing with gratitude. When you acknowledge you have something to be thankful for, no matter how small or seemingly insignificant, you complete the circle only to start the next one.

This post took two months to complete, two months that were filled with positive attitude at the start. But my illness somehow changed the staircase into a slide and 50 days in the belly of the beast gave me a chance to find the panic button. By acknowledging the need to press it I made the beast return me right to my staircase. We did some really hard climbing last week, visiting the Canucks Place, only to emerge feeling the fresh wind of hope on our cheeks. We are standing on the, for now, top floor of our Plan B life building, enjoying the view , soaking up the sunshine. I can see the new staircase coming to the construction site. I can see the crane lifting the entrance of the slide onto our level. It seems more shiny than usual, but I can smell the stench coming from the belly of the beast and have no intention to go down that way. I’m wise enough to never say never, but I know now there is the panic button hiding there too.

Right at this moment there are plenty of things on my to do list, yet I just can’t wait to get this off my chest.

You know that my posts are “authentic”, meaning ugly and truthful. So you have been warned.

Couple days ago an offer from my former boss came that she would love to fundraise this Christmas for my family. And that’s where this strange, upsetting roller coaster of thoughts began.

Why are they doing it? Do we look like we are struggling? Do they just have a preconceived notion that if you have a one kid dead and one severely disabled you must be struggling? Are we struggling? Why does the first question bother me more than the last one? Shit…

I don’t think we look like we are struggling, but that depends on how high your bar is. If by struggling you mean no mani pedi and the only clothing item bought in the last year were jeans for $15 in Target, that you just had to buy since you are too fat to fit into the majority of your clothes in your closet. Then yes holy shit I’m suffering terribly. But I don’t feel that I’m lacking anything important. I have my own roof above my head, my family is not hungry and I have an alive kid. If you tell this to people their first reaction is “quite the low standards you have”, but if you really think about it, that is all you truly need (ok apart form that magic person to share this package with, yup you guessed I have never called my hubby a “soulmate”).

Do people think we should be struggling? Hell yeah, being a one income family in the suburbs of one of the most expensive cities in the world is something unimaginable. Surviving the loss of your second grader and raising very disabled baby is a tough go. So yeah, we should be, who wouldn’t be?

Are we struggling? …yes, but my brain can’t interrupt that thought fast enough with the “but so are other families”. Why am I balling my eyes out right now? Because I have stopped admitting this some time ago. In the name of survival this admission was replaced by “you got this, you freaking survived picking up your kid’s ashes from the funeral home, you can manage this shit, easily”, desperately believing that if you repeat this long enough you start believing it too.

Yes we are struggling with never ending grieving. We will never get over loosing our Sara and every day we are given new thing to grieve about… like seeing kids sit on Santa’s lap looking nicely into the camera and smiling. Our child can’t do any of those three things, not this year, not next, maybe never but I don’t want to think about that.

Yes I’m struggling with keeping our household clean and organized to the level I expect of myself. Lower you standards then, not so fast. That would mean admitting that I can’t do it, and I don’t do defeat.

We are struggling with not having “personal time”, but other parents of small kids don’t have that either.

So the answer is yes, we are struggling, but so is everyone else. Nobody has it all, maybe on Instagram, but not in real life.

And here we go again. Why do I feel so uncomfortable accepting other people’s charity? It’s plain to see. Accepting charity means admitting I need it. By admitting I need it I’m saying I failed… and I don’t do defeat.

My life keeps trying to arrange for lessons in humility, but call me old fashioned, or plain stubborn. Even if life is beating the shit out of me and I’m on the ground in a pool of blood with my last breath on my lips, I would still whisper :” fuck you” just to have the last word.

So there, I’m exhausted by my mental gymnastics and no closer to the answer to what do I do with this offer, but at least I know why I feel the way I feel.

What would you do?

When your Facebook feed shows you your dead child having a great time year after year, wearing the costumes you made her, it gets hard to breath through the wave of tears. Those outfits are still in her closet, but she will never touch them again.

We are trying to work through our grief, to challenge ourselves and don’t fall into the trap of avoiding situations. Some days are easier, but I still have hard time seeing ambulances on the street and every time I see the Critical Care unit I just loose it.

We are yet again approaching the season of painful reminders. Couple days ago we lit the candle on the third anniversary of mom’s passing. Today we should be festive, but I feel anything but joy. Our plain, untouched pumpkins sit on the doorsteps, J wanted to do some fun projections through the house window, but I know as much as he does that will not happen. He said it on our walk through the decorated neighborhood, feeling all light and optimistic for a short moment. Then the reality hits and we barely have energy to somehow get through the days with nothing left for pretending normality.

We are getting quite good at pretending, some days our acting skills almost convince ourselves, but some small slip (like disconnected feeding tube dumping all his food into our bed) always gives it away.

The other day we were so convincing in our act, that our friends recommended us to try a spa together. She described a lovely day with a massage and hot and cold pools. People just lounge and they are not allowed to talk. Fist I truthfully suggested that for me to be silent with my thoughts is not a good place unless some calming or numbing drugs are included. She sweetly assured me that there is plenty of people watching opportunities to entertain your brain. She said they spent six hours there without even realizing it. She was so convinced by our blaze act that she completely forgot that we no longer have a (now would be) 10 year old that can stay with friends for a day (just like they do), instead we have a 18 months old blind epileptic limp baby! I lost it and jokingly added that we will consider it in three years or so if we qualify for some respite funding… The awkward silence following was my punishment and I felt bad for fooling my friends and punishing them for trying to go along with the charade. I hope they can forgive me, you know who you are (I hold no grudges, I’m so thankful that you are sticking with us no no matter how much chaos and pain with bring into this relationship. We try to not let jealousy poison our hearts, even thou you will one day enjoy retirement with grown independent children, while we will take care of our baby until we take our last breath. And we hat burden gets hard to carry, I hope you can understand.)

So sitting in my kitchen on dark rainy Halloween morning I feel sorry for myself yet again. I’m running through my head some projects I would like to finish, so I can feel ok for a while. I’m starting to run out of house improvement projects and that is not good. Don’t worry I can always paint something and move furniture around 😉

I don’t know if I will dress Mr T up tonight, but I will give out candy and smile and have a good time seeing all our neighborhood kids dressed up. But when the pumpkin lights are out and the doorbell no longer rings I will cry, because I won’t get to beg my kids to share some of their candy with me…

Why do we compare?

To measure, to evaluate, to feel better? Yet when we do we mostly end up feeling not so great about our measuring up.

I find my self no longer comparing Mr T to other healthy children, instead I compare if he is better off than the numerous children I come across on my journey through social media. Mostly I come out of this exercise feeling pretty down.

We had some positive things, but the losses were so much greater.

T can no longer eat with his mouth, I find this fact just heartbreaking.

Because of his infection, hospitalization, and his surgery he lost any tiny improvements to his movement. He is yet again a limp doll.

We are fighting with bureaucracy to be able to get medication that might help him. At this point his epilepsy is classified as refractory meaning no drugs seem to help.

I’m trying to research as much as I can and basically show up for our neurology appointment with a laundry list of drugs to try. Our doctor is amazing and supportive, which makes this whole thing at least a bit bearable.

I no longer believe in miracles. I’m scared to hope for something better, because I can no longer handle the disappointment. Two and half years of hell has left its mark.

Days are filled with therapy, phone calls, emails just to find myself alone with my dark thoughts of torturous future. 15 months of no milestones slowly ate away any hopes for Mr T ever walking.

I try not to think this far, I avoid getting emotionally involved in these thoughts. But it’s the last three months of the year and the inevitable evaluation comes, no matter if I want or not.

It will be our third Christmas without Sara. Every Christmas I hope for better ones next year only to find myself facing even worse ones. I know that it’s not about gifts, but when you have nothing to give to your child because he can’t play with anything it really hurts. I used to love the holidays, I hate them now. I manage to participate in the festivities, I love baking, but then Christmas Eve comes. We stare at each other at the dinner table, trying hard not to cry as not to upset each other. It hurts so much, but words are not enough to express the pain, anger, the longing for something we will never have.

I’m truly happy for my friends and their happy Facebook posts, but sometimes in a weak moment I slip… and compare.

From time to time I think of me, my interactions with the world, what is different about me.

I have been a mom of a physical child for about ten years now. With Sara I was your first time mother, bragging, competing about potty training and her other milestones. I was never one of these intense helicopter mothers frantically sterilizing everything. I pride myself of having hobbies other than my child and I enjoyed spending time without her, treasuring the me time. I could hold a conversation about various topics, even thou eventually we all ended up talking about our kids, because they were just major part of our lives. You can’t escape that.

Being Tomas’ mom is … I really don’t know what to call this state, surreal, exhausting, frustrating, emotionally draining, rewarding in a bizarre way? You pick.

He is his diagnosis in all conversions. He has a sweet, laid back, with hints of his sister’s intensity, nature. But that’s pretty much it. He doesn’t do anything typical child would do. So this line of conversation gets exhausted pretty darn quickly. His diagnosis is a conversation filler, his procedures become his milestones. I find myself unable to stop the explanation of brain function biology lesson shtick. I guess the unconscious strategy is to make my audience overwhelmed by all the facts and latest research that they forget to ask all the questions that make me burst into tears. Recently one person did not follow the usual script of these conversations, I have a feeling she wasn’t really listening to my lesson, and when I paused to take a breath she went; “And how are you doing?” I lost my shit right there and then. How exactly am I to answer that? I’m stuck at home with no income doing all the Physio, vision, occupational and god knows what else therapy with my baby that looks at me for one second if I’m lucky. There is no progress to report, so I fill my time researching every drug and supplement I come across on the various forums of parents with epileptic children, hoping to find the magical pill that will fix my son. Seriously, what do you want me to say to you?

I realize that the title is not really relevant. I haven’t lost myself, I’m avoiding myself, because myself comes with memories intertwined with my dead child and right now I just can’t go there. The precarious balance somehow achieved was upset by yet another blow. 24 hours EEG revealed 100 or so seizures, my seizure log had “two big ones a lots of jerks” in it, for the sake of efficiency, really. So here we are 12 moths into this insane rabbit hole. New meds, new combinations, surgery to install his GI tube, which gives us an option of not only prolonging his life with safe way of feeding him without damaging his lungs, but also allows us to try keto diet, if the drugs fail.

So until I can confidently care for his GI tube and have meds that stop majority if not all his seizures I’m not looking for myself. I’m knowingly avoiding myself, keeping busy, keeping the motion and notion of perceived progress. After all I know who I’m, for right now I’m a mom of disabled child, fighting, advocating, researching…

We used to do a lot of living, lately it feels that we are mostly just surviving. Don’t get me wrong, surviving is better than not surviving, but I long for living.

Recently I came across a great podcast “Where should we begin? With Esther Perel featuring a young family coming to terms with a diagnosis of early onset Parkinson’s. I could relate to the struggles of the wife who does “all the emotional work”. She does it in order to protect her family and her husband, who is the diagnosed one. I find myself doing the emotional work too. I do it without thinking about it, but by doing it I deny my husband the opportunity to grow and learn to express his emotions.

So there is the food for thought. I’m sure I’m not the only one.

You know when you are just surviving when you refuse to think about future. When you find being excluded from other people’s plans, because they want to protect you. In the past I would feel excluded, but I no longer judge the intentions of others. None of us knows the demons other people are struggling with, they don’t tend to end up on Facebook and Instagram. So I tend to just leave these incidents with “they had their reasons”.

You know that you are surviving when joy is seldom felt.

I long for living again, but it feels like every time I try I’m faced with the “…but I can’t because”. Very few things are left that don’t elicit this kind of response. And in order to learn the new way of living amongst the surviving we have to find what we can do.

Today we went for a wonderful walk along the bay. We ended up thinking about what we can do. The fresh ocean air and sun gave us energy to muse about riding this trail next year on our bikes, with Mr T in the trailer.

I’m sure we can learn to do living amongst the surviving we have to do.