But years of being at home alone with twins that were constantly sick, a special needs child and that empty chair at the dinner starts to eat away you. Before long, I had no idea who was looking back at me in the mirror. I used to see a person full of hope, faith and energy. I had perspective. Now, I see someone who is shattered. Broken by years of grief and unchecked stress. She's anxious, irritated and angry. The perspective is gone. All I see is the bad, the heavy. I only feel the constant weight of our life, the failure of motherhood. A shell of what was.
It wasn't supposed to be this way. I never thought it would be easy. But sometimes, I do wonder why? Yeah yeah yeah, everyone has their issues. But not everyone has this. Its not just a special needs kid, two poorly adjusted kindergarteners, endometriosis, unexplained dizziness and a broken furnace, it's also a grandma with a serious head bleed the day before a brother with suspected meningitis turned sepsis the week before the anniversary of Ellie's passing. And it's like this all time.
I'm tired. I'm exhausted. And I am angry. I see the ease that other families navigate daily life without appointments, intense schedules, anxiety and neuroses to deal with. They go to soccer, meet friends for dinner (because they are invited out by families that have kids that are nice to their kids), plan spur of the minute trips and the biggest upset of the weekend is how to fit hockey in with soccer and dance class. I hate them. I hate their ease and I hate that they have no idea what it's like on this side. I hate the exclusion and isolation of being surrounded by "perfect."
The anger comes fast and hard. I hate that it's the people in my house that catch it. But I have no strength to stop it and no where else to go. I'm angry that my baby got taken away while others pop theirs out one after another without any consideration to whether they can care for them. I'm angry that some people are given incredible miracles only to toss it aside while I begged for a miracle as my baby turned into an unrecognizable being right before my eyes. I'll take that miracle! I'll trade your wasted breaths for my chubby hand baby. I hate the memories that surround those days- things that no one should ever have to see and unspeakable decisions. I hate the holidays because there is always someone missing- it's never complete. I hate my birthday because it's 11 days before Ellie's and while I get older, she's forever 9 months and ten days.
I hate autism. Not my son. Autism. Because Max is not autism. I hate that people don't see the difference. I hate that it runs my entire life and dictates our every movement as a family, and I hate those who don't understand why it has to be this way. I hate that doctors won't help him and there are no answers. I hate watching my son struggle every day and seeing his face contort into painful tics that no one can stop or is concerned about. I hate dealing with the school and idiot teachers who treat my kid and myself like secondary citizens. I'm mad that everything is so difficult, that everything is a fight. And that it is never enough, it never stops.
I hate the collateral damage. Conversations that end with an angry five year old because you buried her sister before she ever got to meet her. Kids that know too much of Heaven, and exceptions that must be made for certain situations. The knowledge that they will surely hate me when their older because of it. The complete fear and utter terror that comes with the warm skin of a child with a fever. The cascade of images that flood in with the fear- grey skin, eyes rolled back, sirens, the faces of knowing nurses and doctors, the smell of hospital soap, the grinding sound of a line being placed over the sound of me singing Baby Beluga, the constant beep of the low pressure alert, the oozing, the smell of vomit, the voice of the responding officer, the sound of the suction machine, the sound of "I'm sorry".
I'm angry at our medical community for failing to protect and help my child. I hate the appointments, the gas lighting, the lies. I hate the supplements, therapy, droppers and syringes. I hate that I'm not sure there is help out there anymore. I hate that I don't trust those that says they can help and that the help offered is so complicated. I hate special diets and have come to despise food in general.
I hate anxiety and all of the control is has over me. The pounding heart, the shortness of breath, the dizziness, headaches, blurry vision and fatigue. The feeling of drowning while those around you continue to not notice. The feeling that everything is spiraling away and you lack the ability to control anything. But what I hate most about anxiety is how angry it's made me. The constant fight or flight response presence has depleted my ability to control my anger. My body and mind have lost the ability to appropriately respond to stress and has left me broken, exhausted and angry.
I hate feeling this way. But am starting to wonder if it's partly because I never felt this way earlier. Grief has a funny way of not giving a shit what you think. It demands attention and it'll just take it if it's not offered up.
