for the people who know me for a long time, you know that something is up when I don’t share crazy party ideas and cake designs to challenge my skills.

Yes I have been unusually quiet about Tomas’ first birthday party. Since Sara’s death every anniversary has turned everyday tasks into tall mountains to climb. As I sit here, freshly out of the hot bath to temporarily relieve the constant pain, I have very little energy for climbing mountains for superficial reasons. I have been dreading this party since surviving Christmas. With every passing week his developmental gap is getting bigger and bigger. As the year mark creeps closer so do the tears. After yet another nightmare year we found ourselves holding our boy with tears of sorrow pouring down our cheeks. We have not a single milestone to put checkmark to.

It has been a very mentally exhausting exercise to meet up with our friend, her boy is one moth younger than T. It is heartbreaking to see his typical progress, while T is still laying there unable to turn or to reach for anything. We love our friends dearly and we are happy for them, but that doesn’t make our pain any different. I find myself desperately trying to avoid other people’s kids of our boy’s age just to protect my sanity. But at the same time I know I have to live through this cruel exposure therapy.

Society expects certain things, and celebrating your baby’s birthdays is one of them. When the only reason to celebrate is to mark the 365 days he has been breathing, it’s a bitter pill to swallow. Just add 715 days since our girl took her last breath. Let’s have a party, shall we?

I know it sounds horrible and also ungrateful, but when the list of things to be grateful for is something like “he is alive, he can swallow food, he is generally happy” you can’t escape the feeling that the bar is pretty fucking low compared to the rest of people around you. But I have to remember we live in the “other world”. And in that one we are pretty middle of the field, no hospitalization this year, seizures currently responding to medication, no regression. Pretty awesome one might say.

It has been tough, we are turning into some hardcore people, the people who joke about our son’s disabilities, because when you have no power over something you MUST learn to joke about it. Because that’s the only way how to assert your power over the feelings evoked by his disability.

So here we go, it’s time to crush the meds, and start vision and Physio followed by OT (feeding solids), then walk outside. Hopefully just couple seizures before he falls asleep . Cooking and cleaning while he sleeps and look forward to 6 o’clock when J comes home…

I love my baby, I have a wonderful husband and amazing community of people around me, so let’s party… a little 😉

The pain has been too much to handle…

Tomas’ teeth are a cause of his intense crying, his seizures and more crying since he finds the pain of his seizures just too much to handle these days.

The pain of seeing our friend’s pain in his final hours of a decade long fight against cancer.

The pain of seeing memories of Sara in my Facebook feed

The intense physical pain at the end of each day, my body sore from caring for Tomas

The pain of preparing a party you don’t want to have because right now I can’t even imagine how will I survive it

The pain of hiding your feelings from people around you

The pain that is too great to be shared with Jason, because everyday I see his eyes becoming sadder.

June is coming, we can’t stop it. What was supposed to be a big “Fuck you Universe, we can’t be defeated” is now a living hell that was Universe’s answer; “Oh really? Your kid dying is not going to bring you to your knees? Just watch me! Everyday you will see your baby convulse just like your daughter in her final hours of brain function. Your replacement kid will be a limp doll that will depend on you for everything. He might never say a single word to you. If that is not enough how about he will also be blind.”

The pain is raw these days, new pokes of a hot poker penetrating the skin. Seeing people’s healthy toddlers, poke. Trying to elicit a gaze at me, just to see Tomas’ eyes dart like a search light in constant motion, poke…

There are too many pokes these days, coming at me left and right, not allowing my body to heal the wounds, multiplying in number, compounding the pain they cause.

I used to be able to see the hot poker coming, but my brain has suffered under the attacks of stress and grief, and my ninja moves are no more. Like a boxer on the last leg, one hit after another keep coming, me waiting for the merciful white towel to appear. But that would be too easy. My coach is too busy boasting to the ladies about “grooming me” to be the toughest fighter out there. “I killed their daughter, but they ended up donating her organs and saving four children. I knew I have some fine fighters on my hands. But you can’t make diamonds without applying a great deal of pressure, ladies, you know that. I took them under my wings and put them through the paces, and look at that, she just doesn’t go down, no matter what.”- “Are you sure, I think the referee is going to call this one soon.”- “Don’t worry, we work together, he knows to give it a little more time.”

I complain about my coach, the Universe, a lot. But it’s that strange abusive relationship that just keeps me coming back for more. On a good day I feel special, little superhero that is a true inspiration to others. I like that, my ego likes that, let’s not pretend otherwise. When the pendulum of serotonin in my brain swings the other day the inevitable “Why me? I didn’t ask to be special!” reappear and I shout at my coach, voice hoarse, exhausted. Nobody chooses, in their right mind, to be sick, to have sick children.

In the past weeks I wrote several entries that never got published, they were way too dark, they were just a pure exorcism of demons that had to be written down, but ones out in the open the pain was gone and no further action was beneficial to anyone. I find my entries to follow a familiar pattern. They start pretty bleak, but end on a high note. Each of them nurturing the seed of hope, allowing the flower to bloom at the end.

I guess this one will be one of them. Universe had not wrong me, even thou I sometimes feel that way. It had allow me to experience the pressure that creates diamonds. I have a husband I can lean on, trusted friend that only few people have. I have an amazing community of people around me. I have grown as a person and I want to grow more. I have so much even thou I no longer have my daughter, even thou I don’t have a healthy son.

But we always want more…

Let’s just say it has been pissing rain for weeks and it will piss at least another ten days or so. Tulip festivals are just fields of green and nothing else, my garden is a weedy mud pit. I hope by now you realize the mood of this post.

It has been hard, we are still waiting for vision services to start. T’s seizures were well managed, but that is now achieved with ever increasing amount of heavy drugs. Yesterday he slept for 19 hours. I stopped to be anxious about yet another day when he didn’t complete any Physio, when he didn’t learn or practiced anything… Now I see it as a day when his brain rested and didn’t have any obvious seizures. It’s not because I’m eternally optimistic, it’s because I have no more strength to mourn yet another day of absolutely no progress, of yet another milestone missed, another milestone never achieved.

On a rare visit to a store I walked into the toy department only to leave in tears. Out of the rows of toys not a single one can be used and enjoyed in our house… My eyes were swelling and then I walked by the children’s books. I love books and Sara loved them too, we have a great library full of amazing books I was dreaming of enjoying with Tomas… Instead the books are hidden behind the door as not to remind me the loss that hurts me the most. I somewhat accepted his disabilities, but the fact he is blind absolutely rips my heart apart over and over.

In two months we will “celebrate” birthday of our dead daughter, birthday of our profoundly disabled baby and the anniversary of our daughter’s death. There is nothing to celebrate, it’s just another occasion to remind us of the shit show that will forever be our life.

I don’t want to celebrate my baby’s birthday, because it is too painful and meaningless. I would rather celebrate milestones achieved, but even then I dread there will be no party anytime soon.

We are seeing psychologist specializing in trauma, she has no idea what she is about to encounter. We are pretty good at pretending normality these days, but inside our home there are gallons of hidden tears, it is so bad we even hide our tears from each other, because we are not sure if we can support each other. The dam is getting full and the wall can only hold so much for so long. I know the flood is coming, but I no longer care what it will damage. Nothing got fixed after the last flood, so there is not really anything valuable to protect.

On bad days I feel greatly alienated from people, on worse days I feel injustice towards the people I know. Today I feel trapped in the misery of all that I lost in the past two years and the proverbial glass is not half full, it is bone dry.

I haven’t written publicly about my feelings in a very long time. Because I try not to feel any feelings. That is the only survival mechanism that works for me. The dam has been secretly filling up and cracks have appeared without a notice. But I know they are there, because of all the obvious signs. The routines I keep and every deviation is a source of incredible stress, stress that I can’t handle and I immediately start to fall apart.

I know that today is yet again the “danger day”, yet another anniversary of Sara’s death. Two days ago a Critical care ambulance passed me by on the highway and I lost it. I haven’t been crying at the sight of ambulances with their lights on for a bit now, but the sight of the ambulance we so desperately waited for for six long hours, in which our child’s brain died, it’s always too much.

I try to tell myself that in loosing Sara we gained other things, but some days the only gain equals to loosing the hope that we will be parents to a healthy child.

It used to be easy for a while to answer people’s questions. But the ongoing grief has amounted to a detachment from these questions. Is this your first? No we HAD a daughter before. Carefully evaluate my ability to provide details without loosing my shit. Oh she must be excited… Frankly I don’t think she cares, her ashes are on top of his sock drawer… What should I say? I have no energy to make up shit anymore.

How old is your baby? Eight months. So he must be sitting now… No, he isn’t, he can’t even hold his head up yet. Long pause follows with a pity and hopefulness that “he will catch up”. Nope he will not, he might eventually do it too, but he will never catch up, the gap will only get bigger and deeper.

Some days I loose my shit just seeing a healthy baby on TV. It has been harder and harder to look at our friends’ small children, but I force myself to do it, even thou some days it amounts to torture. I know it’s the only way, but sometimes I look forward to Monday’s, when I get to leave the house and have a grown up interaction with Tomas’ Physio. In the waiting room I exchange understanding looks with the lady who brings her celebral palsy four year old. And I feel not alone for a minute.

Today is a rare disease day, what is there to celebrate? Belonging to an exclusive club? Hardly. I don’t feel like celebrating, I don’t feel like accomplishing anything today. No I’m not suicidal even thou I’m depressed. My depression has a clear cause, grief, stress and my disabled child. So I’m allowing myself the healthy thing to wallow in my pain and let the tears fall freely and I thank you all for letting me share it with you

No I still can’t throw away Sara’s last shoes, I might never will…

Sometimes it’s just fun to write about nothing.

We are ten days into the new year and today T had brought me to tears with his wonderful push up on his arms and his head turned side to side, nice and high, almost like a healthy child. Even thou today was a three seizures day, after a string of days of almost no activity. It is amazing to see glimpses of future. First you hope he will do a certain skill, then you imagine how it will feel, you draw a mental image and assign an approximate date when it will happen. Today I lived the exhilarating glorious moment, but now I fear it will not come back tomorrow. Our life is now like that, not linear, we are bounced from corner to corner of the trampoline enclosure. We wanted to be the only ones enjoying this trampoline, but Life summoned the two thugs, Death and Disability and now they are jumping with us on our trampoline messing it all up. We used to do nice high jumps, even couple of fancy tricks, nowadays we just try our best not to break our bones. We no longer pretend to be in control or to be enjoying the fun. Saying you enjoy something means you must first pause and evaluate, but as soon as you do that you are no longer living in the moment. Who cares if you are enjoying yourself !? You shouldn’t, because it becomes meaningless. You live your life, you do what you love, you spend time with people you love and care about. If you are lucky you get to do it a lot. Some days I really feel like we are trying to invent shit just to mask our misery. Life is not that complicated, you wake up, drink, eat, go to the loo, go back to bed. Rinse and repeat, everything else over this basic stuff is a luxury you should appreciate, but you don’t because you feel entitled to have what others have. But you selectively only see the ones that have, not the ones that don’t.

I like my life, my son’s disability gave me a purpose I have lost when Sara died. It’s not only “just” raising him, but it’s literally teaching him everything. Including teaching him to see. It has been the steepest learning curve of my life, my brain is not ok anymore after all that mental trauma, but maybe reducing my brain to basic functions will help me to survive this excruciating, numbing repetition of exercises he needs to do on a daily basis.

The darkest clouds always need to move first in order to reveal the silver lining.

I can see mine and I’m thankful for that. But I do not thank imaginary God, I thank myself for the tenacity, stubbornness and general inability to just “GIF UP”

We don’t do that in this house, because this is Sara’s house.

Wow, another year almost gone.

Last Christmas we lived the hope that in 365 days there will be a little boy sitting under the tree trying to take all the ornaments down. The reality is there is a boy, laying under the tree making jerking uncoordinated arm movements who can’t even see the tree…

I feel like living in a strange movie, whose director read my secret journal. Now he is using all my worst fears to create “It”. But I don’t want to live in a horror movie, chick flick or an interesting biography maybe, but I hate scary movies.

Every parent fears the death of their child. We lived though it, didn’t get over it, never will. I feared having mentally and/or physically disabled child. Now I have one. In the strange hypothetical game “which sense would you not want to loose” I would always pick sight. Not being able to see presents a very cruel form of torture to me. And here we go mister director, why don’t we throw blindness into the mix? So far this sounds like a great opening to a horror or a drama movie, but I have no interest in staring in those. The director will have a fit and he will need to do some explaining to the studio executives, but this will be an inspirational “dramedy” (I loath that word, but it works so well).

So how about this pitch? Forty something woman, unsuccessfully hiding the ever growing number of gray hair who resorts to making jokes about the post pregnancy left over pounds is fighting to give her only child a better future than the doctors predicted. She fights for the services for her son while trying to keep up with the super momma image. It goes all to shits one day and she emerges from the wreckage a better, kinder person.

Would you watch this? If I’m stuck on a plane I might 😉

2017 was a heck of a year, I’m not sure if it was worse than 2016. But no matter what it was (technically still is for two weeks) it gave us an opportunity for a tremendous personal growth. And I do hope 2018 will provide us with ample challenges, because we are like diamonds. It’s just carbon until you give it a heck of a squeeze.

I write when my words fail me, when sharing my ache with my wonderful husband is out of question, because he is in the same dark place as me. Since Sara’s death we established two rules; you ask “How are you, right now?”, because intense grief can leave you elated one second and ready to jump off the bridge the next second, so you can only speak to “right now”. Rule number two is “Losing your shit is ok, but one at the time, please.

I don’t remember losing it when Sara died, the hospital stay passed in a strange suspended haze. Back then I didn’t grieve, I didn’t know how, but I had over a year to learn. This world shuttering grief can only come from deep love and back then I didn’t know how much I loved my daughter. My love for her was hidden beneath the everyday worries about her meltdowns, about her OCD monsters… Only the cruel and abrupt events of her passing could remove all these layers at once, and what I found deep below was a volcano waiting to erupt.

The volcano was boiling, sometimes rising all the way to the brim, but never exploding. It got covered by everyday worries again when Tomas was born. Within couple weeks the crust of worries was growing exponentially, he is not holding his head up, his limbs are strangely stiff, he never looks at me, or anything else for that matter…

And then the Tuesday afternoon when his diagnosis came. The force of the eruption took my breath away, for three whole days.

I grew as a human yet again, I acknowledged that I’m weak and need help, I reached out to mental health professionals, took sleeping pills to give my brain at least a fighting chance of recovery. Three long days of soul searching, evaluating and simply feeling sorry for myself. The Phoenix of my soul emerged from the fiery depths of the volcano all new, skinny new little bird, awkwardly flapping about but determined to fly. Not to just fly, to fucking soar, to reach unimaginable heights for my son, for my husband, for our grandparents, for our friends, for me…

I’m still so new to this world of disability, altered ability, developmental delays what have you. This is a completely different universe then the one I used to live in. I’m extremely competitive with a need to quantify progress. I like that about me, I also managed to “tone it down” a bit over the years, but I always felt it to be a heavy burden. The world of disability doesn’t contain any device to measure progress. For a parent of disabled child milestone is achieved, because it doesn’t matter when and how, all that matters is that it happened. The mere fact that it in deed happened is a cause for a joyous celebration, deep, profound, ecstatic outburst of all the good in the world. This world is void of expectations, deadlines and boxes to tick. The doctors, the governmental agencies try to impose those things on the parents, but they are merely devices to bridge the gap between those two worlds. In my new universe there is only one box to tick, it asks DID MY CHILD SMILE TODAY?

I used to feel sorry for parents of children with disabilities, today I feel sorry for parents of able children. I feel sad that they have to compete, compare, keep up with, perform, meet expectations… while never experiencing the deep, intense joy that only someone who lost hope, who mourned and who now lives in the alternate universe of beautiful “dis abilities” can really experience.

So did my son smile today? Yes he did and it was awesome.

Our genetic test results are back and our world has been turned upside down yet again. Tomas has a rare gene mutation on GRIN1 gene, as far as we know majority of children diagnosed with this mutation have moderate to severe intellectual disability and moderate to severe physical disability. There are couple blogs by parents of children with GRIN1 and all of them are non verbal unable to walk…

When Sara died we grieved for all the things that will never be. Then Tomas was born seemingly healthy we rejoiced again at the future as a family with a child. We never dreamed that Universe wasn’t finished “punishing” us, but it turns out there were many more surprises left for us. We are suddenly grieving again for all that might never be. I have known his diagnosis for four hours and I haven’t stopped crying yet, my head feels like exploding and for the first time in many months I don’t know how I will wake up tomorrow and carry on. When I look at Tomas he seems so perfect, yet all I can suddenly see are his insufficiencies. The lack of muscle tone, his rigid arms and legs, his unstable head, the lack of eye contact…

I’m petrified of the future. I have always had an admiration for parents of children with special needs. I admire them for their strength and perseverance. I don’t know if I have that in me. Right now I doubt how I will cope, how I will cope with each missed milestone. I imagine every single activity I dreamed we will do together, biking, skiing… and my heart brakes again and again.

I thought my last post was dark, but here I’m standing in the middle of emptiness and all I can feel is despair. I want to see a silver lining, but the dark clouds are too thick right now.

How utterly optimistic my last post was. Four months, gallons of tears, countless hospital visits and stays later I sit here and can only cry.

After loosing Sara we endured yet another pregnancy, ultimately holding our beautiful boy in our arms, so perfect, so healthy and strong…

We were on top of the world, flipping our fingers to the cruel Universe shouting that we would “Nevre gif up”

But it only took Universe sixty days to bring us to our knees again. I don’t even know how to quantify the pain of seeing my baby convulse in my arms, just meters away from where his sister’s body shook for the last time, her eyes wide open yet not seeing me anymore. His little body stiffens and eyes start to roll and flicker and I hold him tight, as if I could hug and kiss the seizure away. But I cannot…

In one of my posts I wrote about grieving the future that will never be. I have to add another type of grief. The grief that is brought on by your fear. The grief that only parents of disabled or seriously ill children know. The endless “what will happen” questions that torment your mind and you keep asking the doctors. They skillfully avoid the answer with “let’s focus on now” and in the end that is the best answer. But there are days when I just want to drop to my knees and tell them;”please just lie to me, tell me what I want to hear”

Some days are like that, overwhelming in way too many ways with burdens that nobody but you can carry. Some days you deeply hate yourself for many reasons, but you carry on.

Thank you virtual paper for lessening my heavy load today, but now I have to pick up the physical paper and write down yet another seizure…

You know that day you spent an hour writing your heart out and all those words vanish with a click of a button into the abyss of malfunctioning application… So goodbye Tumblr, because I don’t only talk the talk, but I also walk the walk…

Here is what I can remember from the last hour of writing;

It’s the 28th again, the start of three days of tears that can’t be stopped. And I don’t want to stop them anyway, it’s the time dedicated to cathartic cleansing, it feels good and bad at the same time, but we are used to that now.
The photo that appeared in my “memory” section on Facebook, opened the floodgates for today.
It brought back the memory of the tiny square of tissue paper the nurse handed to us as we waited for the results of Sara’s brain scan. I no longer remember if our reaction was “she will be pissed that you touched her earrings” or “she would have been so pissed at you if she knew”, I truly don’t know if that horrible reality was starting to sink in or not. J and me lost a lot of our brain cells due to the trauma of the following four days. We are still discovering new areas of damage and are learning to compensate for the loss.
The photo also brought in the memory of the last goodbye. What do you tell your child when you get to touch their warm, soft skin for the very last time? Love you seems hollow and almost meaningless after you have repeated it for the last four days for every waking minute. The only thing that came to my mind was “Be brave”. I don’t know if it did anything for her, but I think it was meant to be more for me, for us. Because dying appears easy from the perspective of the survivors. Dying is finite, but surviving requires all the bravery in the world.
Stephen Tobolowsky wrote in one of his short stories; ” Everything is a prison, everything is a doorway”
For the past eleven months I have been oscillating between searching for the door knob and the realization that prison door can only be unlocked from the outside. That’s despair, but the ultimate despair is surrendering to the fact that you grant outsiders the power over your life. And count me lucky, because I only know despair.

I don’t know if you get to be born with some evolutionary advantage of being able to walk forward no matter what or if it’s a skill that can be taught. Sara was definitely born with a fierce drive to move forward. We loved and despised this trait of her personality daily. When her “self” emerged we just tried to contain this force and make it more bearable for her and the people around her. I know I was born with less severe drive than hers, but it still took 41 years and the death of my only child to “tone it down”. Acceptance and kindness to oneself can only come from rebuilding a shattered universe. Sara shaped our universe for eight years and shattered it in a matter of few days. But ultimately I thank her for this crazy blow up. She made me to have to rebuild my universe and in that opportunity I could make it better, kinder, forgiving…
Our prison of loss became a doorway to a different life. I have struggled to comprehend why I was thrown into the prison in a first place, but by abandoning the question why, I reduced the sentence and suddenly the prison cell morphed into just another room with a doorway. I wonder how many of us have had their comfortable room turn into a prison cell without even realizing it. Or their prison cell giving them all the comfort they require at given time? Chicken or egg, who knows?
So Stephen even thou I understand your analogy, I think I have a better one; “Be it a prison cell or just a room, there is always a door” The question of choice of safe prison cell over very scary room with a doorway is up to everyone’s choosing. But just remember that leaving the scary room only takes some steps and opening the door. And I will share a secret with you, the door is never locked, because no lock can withstand the force of your decision to walk free. All you have to do is make couple steps in chosen direction and the scary room becomes a memory soon to be replaced by new adventures, new rooms.