ok. I have given you the back story to our journey so far. I could have written thousands of posts about what we have endured so far. But I kept those short and sweet.
Until now.
This post is going to be raw, uncensored, probably cause some judgement from the peanut perfect parent gallery. But this is the living h** I call life.
Every morning I wake up, and I am afraid. I want to roll back over and go back to whatever dream I was having that did not involve my life.
I wake up, and I am afraid. What is today going to be like with her? Am I going to be lucky and have a good day, and maybe we can leave the house and go do something?
Usually, my questions are answered rather quickly as I can hear her yelling and throwing things in the kitchen. So I get out of bed, and attempt to diffuse the situation knowing, its probably going to get worse. But if I plan to save whatever she is doing from being broken or thrown everywhere I have to go intervene.
While she is screaming at the top of her lungs, I am also holding back the urge to scream. I just want to one day have my coffee, make my kids a fun pancake breakfast, and hear giggles….
This is usually how the day goes. All. Day. Long.
If she asks a question and I give an answer she doesn’t want, its immediately followed by screaming, door slamming, her calling me a bad mom.
The worst part is these tantrums happen everywhere. Outside. In public.
It brings me so much anger and anxiety.
I am angry because she does not have the capacity to understand reasoning. I can try and explain and talk to her until I am blue in the face. Her brain is so inflamed, she just doesn’t get it. She cannot comprehend why, or how, or why not. Usually her response to me trying to explain is from left field irrelevant to what is even going on. Its exhausting
I am angry because we cannot go anywhere. We cannot even go out into the backyard without a full blown screaming, yelling, full body thrashing, episode, if we tell her she cannot do something she in her mind is set to do.
When we lived in the country this was not so bad, we did not have neighbors close enough to hear or watch.
We recently had to moved due to some health concerns at our old house. A house I loved. A neighborhood I loved. A school district I loved. But again. PANS wins, PANS got to take something else from us.
Now that we live in the city, its basically pull your chair up to our lawn and watch the show unfold.
Ive been told how embarrassing it is for others when this happens in a public setting. I mean do I even apologize for that? How do you think I feel being IN this scenario? Me trying to scream over my child who is screaming, and I am basically at my wits end by 8:30am? Or do I ignore it, and the people watching still placing judgment that I just need to get my kid under control? Yeah super embarrassing for you. Try living in this hell and see how you respond when you have reached your peak point of exhaustion and you know it wont end. Because this isn’t and every once in a while scenario. We will go home and endure about 3-4 more before bedtime, some lasting hours. I am so glad all you can see is your feelings instead of understanding, MAYBE just MAYBE, my emotions spilled over and you just so happened to bare witness to it all and get a glimpse of our hidden reality.
I promise if there was a book written on “how to parent your child with neuropsychiatric illness without loosing your sh*t yourself” I would have read it… but there isn’t … every single PANS/PANDAS parents have the same question “how do we get through this, how do you parent a child like this”
because our reality is… our kids CANNOT CONTROL THIS! Most kids have absolutely no recollection of the episodes, they are gone, you can see it in their empty dark eyes, they have ZERO idea of their response…. And that is the most infuriating part of this illness… You cannot attempt to calm, or rationalize with something that isn’t even present to rationalize with.
When your days are filled with constant battles, constant screaming, constant arguing, constant meltdowns, constant over the top reactions in 0.1 seconds… I do not think the calmest parent in the world wouldn’t have a moment where they do not snap.
A person can only handle so much before they loose all sense and composure… they named a show after it called “Snapped”
Anyways I got off track a little bit.
After a while, you loose friends, your marriage crumbles (the question of divorce sadly is a weekly talk for us) your other children suffer. People lecture you on how you need to handle things better. You stop being invited to things and then given the most ridiculous excuses. You watch from facebook, all of your previous friendships going on, doing things with other friends, being happy, enjoying life, their kids playing with each other because your family has now been limited to private gatherings only. It is the loneliest life.
You end up alone in this hell.
You end up resenting your PANS child. I know that is awful to say as a parent. But, if it weren’t for PANS you would be living a normal life instead of this prison and everything that comes with it.
Its like the 7 stages of grief over and over again.
- Shock and Denial- denying that this is forever our life, pretending it doesn’t exist. I will wake up in the morning to a new life
- Pain and Guilt- Did I wait too long to get a diagnosis? Is this my fault? Did I do this to her? Was it something from my pregnancy? What could I have done different?
- Bargaining and Anger- Pleading with God every day to make this stop. Asking what you did to deserve this? What your child did to deserve this? Why? Why does God hate me so much? Why cant he make her better? Why would a loving God give us a life like this? What have we done to make him so angry with us he has to take it out on our daughter
- and so on and so on
The depression I have faced from this has been, awful. I cry all of the time. To be honest if I am not yelling I am crying. I do not even want to be around myself. I put on this fake smile and laugh, but on the inside, I am broken into a million pieces.. And the worst part, the hits from people just keep on coming. Its almost as if I could start handing out numbers for people to tell me what I am failing at today, so I can add it to the list of failures and things I am not doing right.
Isn’t that sad. All of the joy in life has just been sucked out. Its absolutely empty. When your days are filled with so much anger from your child, it leaves you in a constant state of exhaustion to feel anything else. You are afraid to feel joy because you know, its not going to last. You know in a matter of minutes the joy will end and be overshadowed and end. You are constantly afraid of when the next time PANS shows its nasty face.
I find myself angry, almost all of the time. I am angry that I have lost so much. I am angry how much is taken away from my other two children, not only her childhood has been taken but also theirs. All they see is yelling and screaming, and an exhausted mom who cries, a mom who also ends up yelling herself because she just cannot take it anymore. Because we cannot do anything outside of the house out of fear, they miss out on opportunities.
It sucks.
At night I am often left guilt ridden of the day. Did I handle this right? How can I not yell tomorrow? How can I not loose it myself? How can I be more calm? How do I love her? How can I just love this life we have been given? How do I feel thankful for THIS? How…
how do I continue to have the strength to go on?
When you have to listen to your 8 year old talk ill of herself, saying she doesn’t want to be in this world, that she has no friends, that she hates herself, she is alone, all she wants is a friend but they hate her because she is bad….
that hits you into a part of your soul you never knew existed.
how do you fix that? how do you make that better when everyone has abandoned you? How can you say you have so many friends who love you, when the reality is, everyone has abandoned you and her. Everyone has abandoned her because she is different. Because she cant play like the other kids, because she doesn’t process things like normal functional children. Because she is a little behind on her maturity… because she feels so deeply sometimes she explodes.
IT KILLS YOU! Because you cannot fix it no matter how hard you try. When you witness other little girls just deciding not to play with her, and the smile you very rarely see diminishes to anguish and sadness…. let me tell you that is something NO parent should ever have to bare witness to.
When she begs for a friend to come over, and you have to make up an excuse they are busy because you know, those “friends” arent her friends because you have seen how they treat her… it sucks
When you cannot bring yourself to plan a birthday party she talks about having, because you cant bare to see the disappointment when none of her friends show up.
this disease has taken so much.
The truth is, I’m sinking. I am so full of grief, anger, sadness, anxiety, jealousy. Its consumed me to where I am not even sure I am a person anymore. My joy is robbed. Exhaustion has taken over. This is my normal. This is my life.
This is the dark side of PANS
A PANS warriors journey 