The last week or so my FB page has been filled with photos of friends children. Kids with smiling faces as they eagerly look toward days filled with swimming, playing, and then onto another school year and another grade. No longer will they say, “I’m a second grader”, but they will proudly tell people, “I’m in the third grade now!”
I see photos of older kids, decked out in graduation cap and gown, leaving the care free days of high school and by extension, childhood behind. Older kids with a summer ahead to prepare for college, trade school, military service or to enter the work force full time. My screen is full of so many rays of hope, so many dreams of the future held in the hearts of parents and children alike. I am happy for them all. I am…I am.
The end of this school year has no meaning for Pickles. While 2 years ago she was reading, writing, and doing math well ahead of her grade level, she has now lost 2 full years of school being in and out of psychiatric units and residential treatment centers. Two full academic calendar years and many more years in her own inner ability to do more than the low end of 1st grade work. She can write her name still, all be it the readability depends on the day and the level of her psychos in that moment. The majority of her letters and her numbers are written backwards and anywhere and everywhere on the page. It all depends on where “they” think she should write.
Reading? No. Pickles can now barely read the simplest of words; and that’s on her best day when her “ghost friends” are hiding deep in the recesses of her mind. My daughter who should be looking ahead to the 3rd grade, spent 30 minutes in “time” (read: isolation) yesterday drawing about her behaviors that landed her there because she can’t write about them. Because she can’t but barely write the simplest of 2 or 3 letter words.
Pickles is so smart. Anyone who has met her and talked to her will tell you how she is bright and engaging. That’s what makes looking at all those young smiling faces rip my heart out and bring me to tears tonight. While Pickles talked about her first real off campus activity at her new residential treatment center, I choked on tears. While Pickles told me over and over again the same story about her day, all the while pausing as if to listen to something other than me on the other end of the phone, I held back tears. As she hesitated when I asked how she was feeling, happy, or tired or something else…when she hesitated as if to listen to someone other than me before quickly saying she didn’t want to talk about it, I held back the tears. I held back the tears when I said that it was ok if she didn’t want to tell me, and I held back tears when the reply to that was given in a hushed little voice:
“Mommy I can’t tell you, they’ll know I talked about them.”
When I asked her who she was talking about the reply given in an even quieter voice was:
“The moons!! They keep watching me all the time! And they don’t like it when I talk about how I feel because it makes them mad. They will make me die!”
As the gravity of those words sunk into my heart like hot, molten lead into a smithy’s cauldron, I choked on my tears so as not to let my little girl hear them in my voice.
While all the while, all I could think about were last days of school, summer swim parties, and family vacations under a warm sun. And the end of my world as I ever could have known it.
Mother’s Day. Breakfasts in bed, delivered on trays full of spilt juice, burnt toast and bowls of Cheerios overflowing.
Mother’s Day. Warm spring days spent at parks, still dressed in Sunday best, laughing and playing catch, pushing on swings and games of hide and seek.
Mother’s Day. Dinners prepared together, parent(s) and child(ren) snuggled on couches watching movies.
Mother’s Day. Bedtime stories of Princesses and Brave Heros on adventures to Neverland, goodnight prayers to bring nighttime serenity.
Mother’s Day. 2012
The second year in a row that Pickles is in a Residential Treatment Center. The only difference this year from last is the zip code and last year she was able to have a pass home. I can’t recall if it was for the day or the entire weekend, but it was a pass. This year I will hop in the car and drive a few minutes down the road, park the car and take a deep breath. After I compose myself I will walk to a door and push a buzzer. A garbled voice will say hello, and I will respond with, “I’m here to see my daughter”. The door will open.
I will walk in, sign a waiver, hand over my Driver’s License, slap on a sticker that says, “Visitor” and walk down a long institutional hallway. I will enter a small cafeteria where I will be brushed over by a wand to ensure I am not carrying any weapons, or other contraband. Then I will sit down and wait for my child’s voice to enter the room and carry over the sounds of the other parents, families and friends there to visit their children and teenagers.
If all goes well, I will sit and read to Pickles. Before she went back into the acute hospital this last time we had started to read “His Dark Materials” or as the movie titled called it, “The Golden Compass”, by Phillip Pullman. Pickles loves this movie and story because it was from this we chose the name of our beloved dog, who passed away this past December. So, if all goes well I will read to her and we will talk about her new friends. Who may or may not be either real, or her friends. We will talk about how she isn’t allowed to participate in more than the minimal of off unit activities since she has not been there long enough. We will talk about the movie she watched last night while the other kids were off site, and we will talk about other things.
We will talk about how the eyeballs were scary last night. The ones that are following Pickles wherever she goes. We will talk about the ghost puppies, who don’t like our new puppy at home. We will talk about why they want her to hurt the new puppy and if it would be safer for everyone if we find a new home for the puppy. I will explain for the countless time why Mommies friend and her “Uncle” Trystan hasn’t called like he always has every 3 days for the last few years to sing to her and tell her of his adventures traveling and stories about all the animals at his home in Glasgow, Scotland, and how as soon as she is feeling safe he will bring her and Mommy for a visit. We will talk about why sometimes things in life don’t go as we pray they might; but that when things go astray, it doesn’t mean that God doesn’t love us. We will talk about not sleeping. Pickles because she is in a manic/depressive cycling phase, and me because…just because.
Eventually Pickles will wander. Either her attention, or her patience, or all of her. A noise, another kid, or something inside her own mind will pull her away. From our visit, from me, from herself. It may be that the 2 hour window for visits has ended, but more than likely it will be one of those other things. As it usually is.
I will then walk back down that long hallway, collect my I.D. and go back to my car where I will sit for a few minutes, possibly send off a text message to one or two of my best friends, then pause and catch myself before, yet again, I send a text message to “Uncle” Trystan. After all, they haven’t quite worked out how to get texts to heaven just yet. When I have it together again, as best I can anyway, I will start the car, back out of my parking space and turn up the stereo; in some vain attempt to block out the sound of Pickles saying “Bye Mommy” before she returned to her unit. Drown it out from ringing in my head. Pickles won’t have said “Happy Mother’s Day” since she has no concept of time or dates, in or out of the hospital.
I will pull out of the parking lot and drive away. I need to go pick up a few groceries and the the puppy needs to go for a walk.
The reality is that no one’s life is a straight line. None of us has a life that could even be compared to those boats that go around in a circle in the Kiddie Land portion of the amusement park. … Continue reading →
For the first time in a really long time I can say that I honestly believe Pickles will be coming back home soon. Sure…I’ve sorta felt like that a few times before during the past 9 months, but this time there is something just a bit different. This time her giggles are natural, not forced in a way to make everyone around her think she’s OK. They aren’t there in a way that I only want to believe in. Instead of a way I can.
I think…I know that all those times before when I would see her smile, when I would hear her laugh I wanted so desperately to believe it would all be over soon. Looking back though there was still an empty-ness in her eyes. That empty-ness has been replaced with light, with a little sparkle, and a whole lotta truth. Sure, until the day I go and she and I pack up all her stuffed animals, blankies, clothes, drawings and artwork I will continue to hold my breath. Maybe though, maybe this time I can let just the smallest wisps of breath, of hope, out here and there.
Pickles has come so, so…so far. I was watching a video I took about this time last year, when she was in one of the darkest places I’ve ever seen her in. She was raging, she was self-harming, she wanted to die because she could not only control her aggression towards her teachers, classmates, and toward me. Also when she did try to hold back her auditory command hallucinations they would threaten everyone around her. In her, at the time, 6-year-old mind, she reasoned that it would be better if she did the hurting. After all her “ghost friends” were bigger, badder, meaner. In a way filled with an odd assortment of love; her punches, slaps and kicks were in fact her way of trying to protect me and protect our dog.
A year later she is not only much more stable thanks to a fairly strong medication regime including: 750mg of Depakote, 10mg of Saphris, 3 plus mg of Clonidine depending on her day, and a standing PRN (emergency dose) of 1.5mg of Haldol if needed. That regime combined with her cognitive development has provided her with the ability to reason within herself as she has stabilized and therefore been able to, for the very first time actually use the coping skills her therapists and psychiatrist have taught her. Huge…all huge for a little girl whose mind is, and has been, filled with not much but terror since she was able to talk, and who knows how much fear even before then.
I don’t recall if in previous entries I’ve answered the question I get asked almost once a week. The question of do I hold any blame or ill will toward her birth parents. For bringing her into the world knowing they were ill, or for them exposing an unborn child to serious drug use and drug environments. I wish I could say I never do. I wish I could say that over these last months, these last far too many months, that there hasn’t been many a night when I’ve climbed into bed with the house much too quiet and her Princess Bed empty, that for a moment or two I haven’t thought ill of them. Her birth mom especially. But…it passes. It has too.
Because for any effect anything about them, or their life choices had on her, without them I wouldn’t have my little girl. Ups, downs, good times and not so good times. And as I have said before, regardless of what our last 7 plus years have been like, whether this time it is for real, or whatever the future holds, she is just as much a part of me as she would’ve been under any other circumstances. For whatever reason God gave her to me to care for, to love unconditionally and to…fingers crossed…bring back home sooner than later.
It’s time to let all the fear, the sadness, the failed attempts to transition back home that have come before, it’s time to let all that go. It’s my hope that we have turned a corner, at least for now. So..tonight I’m attaching this video from “our” favorite band and one of Pickles favorite songs…
Which is my excuse for the time between posts again. I didn’t want to jinx it. Turns out I didn’t have to worry about that, things jinxed themselves. Pickles isn’t in as much of a scary place as she was a few months, or even a few weeks ago. At a meeting with her Staff this past week it was nothing but all positive. My beautiful daughter is re-gaining acadamic skills she had lost over the last year or so as her Schizoaffective worsened. Cognitively, same story. Pickles is skipping and her fine motor skills, something she has always struggled with, has improved! Staff comfirmed what I have known for 7 years, she is artistic and creative, and while her artwork over the last year has either been really abstract, down right detailed like you wouldn’t believe, or rather creepy; It’s now more definitive and doesn’t so much look like something created by someone on too much LSD.
Until…that horrible word…until. A word every parent with a child with any kind of illness or disability hates more than people in Wal Mart in thongs and tank tops.
Pickles was supposed to have a pass home for the weekend starting tonight. It was canceled and I will hope for more luck tomorrow morning. Being Mommy I have ideas, theories on why. Pickles always has metabolized her meds fairly quickly, so maybe the Saphris has stoppped doing it’s job, or maybe the Christmas Season has brought on too much enviornmental stimulation. Maybe…maybe..maybe. This time things do look different…shorter but more intense dissassociative episodes mainly. Today after numerous lengthy discussions her Staff, Treatment Team and I decided to add a prn dose (prn=used in emergancy situations) of Haldol. If you aren’t familiar with that go ahead and Google it. It’s not something just given out like like candy, to child or adult. Even with the much publized talk about how we overmedicate our children. This is a first line anti-psychotic, one of the big guns you might say.
I tried so hard avoid this place. I know there are those out there who simply think, or who have even said, “You know this was a possibility for her, so why are you sad about it? You knew it was coming.”
Bite me, and then here let me bend over. Then I’m going to kick you really, really hard and sick my dog on you.
Whether I knew it was a possibility or not, this is my child, and no parent wants to see their child travel this road or any like it. Go on…I double-triple dare someone else to say it to me. I understand there may be a time when this Residential Treatment Center placement is either long-term, or permanent just to keep Pickles safe. I am sure I have said this before, but damn-it she is my baby girl who when she is scared, when she is sad, when she is “there” she still crawls on my lap and just wants to be held and told it’s OK and is safe. After all I’m it…I’m all she has in the parent department. Yes, the majority, majority…of our extended family is beyond loving, understanding and there for us. But bottom line, I take this single parent thing to the highest level.
A week or so ago I was confident she would be home for good before Christmas. She’s 7, and Christmas is a big deal. By extension it makes it a big deal for Mommy. My hope now tonight is that this new medicine will make that still possible.
Since my last post other things have happened which impact all “this”, in a round about way at least. I finally after several years completed my Ph.D. What makes it somewhat relevant is it’s a Docorate in Philosophy with a research concetration in Neurophilosopy. (Yes I am that much of a nerd.) I didn’t intend to learn so much about the chemical, electrical and enviornmental factors related to how we think and function, but I did. Which means I learned all about how those things combined with Pickles Birth Parents genetics may be impacting the horrors my beautiful child deals with. Knowledge tonight I wish I didn’t know. Yippee.
Over the last few weeks I’ve been asked several times if I am going to use “Dr.”, or Ph.D., and I haven’t, and still don’t, really know. Not because how much it might cost for one to be printed on a business card over the other, but because it’s not what I think of as my main title, my primary and most important job, ever. It’s what I am most proud of in my life’s path. That would be my job, my title as Pickles Mommy. And to be that Mommy isn’t a part-time, or a side hobby. Next weekend my family is putting on a graduation of party for me. I am hoping Pickles can be there, because it’s not just to blow a horn for me, but it will be…has to be…a celebration for both of us.
For as much as I have worked for this, so as Pickles. While I stayed up all night working, she pulled out her hair thinking she should be dead. While I went cross-eyed reading and taking research notes, Pickles cried in corners terrified of giant cats and oogly-eyed monters. While my fingers went numb writing a dissertation, she fell asleep in school because of the sedating effect of her medications. And while I argued and had to come to terms with needing to keep a distance from some family and friends because of their negativity and cruel judgements on my commitment to the baby I held almost 8 years ago, Pickles crawled on my lap and cried and screamed in the night for me to cram into her Princess Castle Bed with her to keep “6″ from killing her in her sleep. So I guess I don’t know what I will use. Maybe I’ll just use nothing, ignore the “title”. Does it really matter more than being Pickles Mommy?
In this moment, I don’t think so. No amount of letters can hug me the way my Pickles can. There are those times when she is disaccostiaed and has no clue of anything going on around her, during those times she is gone, not with me. What is here is the disease which is part of her, but not all of my Pickles. Since she was born almost 8 years ago there have been those who have come and gone from our lives…from hers, from mine. Some by their choice, others thru my just not wanting that meaness around. Those that have hung in there, new and old faces both, are amazing souls and we love them.
Yet…
The constant…the one soul who has been the most important person, and will always be for many years to come, is the person and the presence who is here, all the time, 24/7, whether she is asleep in her Princess Bed, or asleep at the Residential Treatment Ceter, she is here. When it’s her disease that is present, I know that in there somewhere, hiding away from the terror, is an adoring, kind, loving, smart, and creative person.
Who I still hope, regardless of what the future holds, who I still hope will be able to grow up and use those talents, that brillance, that unconditional love to make the world a better, happier place.
As usual I’m including a video. This time I’m also including the lyrics because when I hear it parts bring to me the disease who pushes Pickles into that corner of her mind and her enviornment to hide away, while others bring me to the true person who is my daughter.
The song is “My Immortal” performed by the band Evanescence. For those who either know my Pickles, or just through her pictures, you will see why I see my kiddo in the vocalist, Amy Lee. And the scenes in the video, of her walking around the fountain alone while all the kids play around her, those who know her struggles will understand the symbolism.
I’m so tired of being here Suppressed by all my childish fears And if you have to leave I wish that you would just leave Your presence still lingers here And it won’t leave me alone
This disease, Schizoaffective Disorder, brings out all
of the nightmares in both of us. And while Pickles isn’t at home
right now, the ripple effect of her symptoms are around me
every day, every night.
These wounds won’t seem to heal This pain is just too real There’s just too much that time cannot erase There is no way to tell what the future will be like for Pickles.
No matter though, it’s shadow will hover.
When you cried I’d wipe away all of your tears When you’d scream I’d fight away all of your fears And I held your hand through all of these years But you still have All of me The chorus is just for my Pickles.
You used to captivate me By your resonating light Now I’m bound by the life you left behind Your face it haunts My once pleasant dreams Your voice it chased away All the sanity in me It’s about Pickles and what this has taken from both of us.
These wounds won’t seem to heal This pain is just too real There’s just too much that time cannot erase
I’ve tried so hard to tell myself that you’re gone But though you’re still with me I’ve been alone all along My forever, continuing and always hope that somehow,
be it via her growing up and learning how to
live with this, the medications, the therapies and
a combination thereof;
My hopes that it will just go away.
And that it can someday be she and I day to day,
hour to hour. Schizoaffective Disorder has left me alone,
and in so many ways without the child I brought home
from the hospital.
When you cried I’d wipe away all of your tears When you’d scream I’d fight away all of your fears And I held your hand through all of these years But you still have All of me
No matter what, no matter the pain, no matter the sadness,
no matter the fear, no matter….You will always…always…
without judgement, without the intolerance you might face from
this world…I’m always going to be here.
Pickles you will always have all of me,
all of Mommy’s heart. I’ll be here to wipe those tears,
to fight those fears,
and to hold your hand.
The clock on my laptop tells me it’s now September 12, 2011. The ten-year anniversary of the attacks on the World Trade Center has come and gone. Today television, radio, internet were filled with memorials, remembrances, images and sounds. I can’t count how many times I’ve watched those buildings collapse today. Did I cry today? Did I close my eyes so that I wouldn’t have to see? Did I put headphones with music on to block out those ambient sounds?
Yes.
Yes I cried today. I cried when I tried to call and see when would be the best time to go see my daughter and no one answered the unit phone because, as I was to learn later, staff was trying desperately to keep her in a therapeutic hold because while the world outside was reliving the terror of that sunny fall New York morning, Pickles was living a terror that in the last 2 1/2 to 3 weeks has all but consumed her.
Yes I closed my eyes today. I closed my eyes as I turned away from what is now historical footage, and my gaze moved over a photo of my daughter taken just over 3 years ago now. It’s a photo of Pickles cherub baby fat cheeks and her big eyes; eyes that everyone who meets her can’t help but notice and comment on. It’s a photo not of buildings collapsing but of baby fat cheeks and eyes looking up and full of hope, life, love and an innocence that has since been torn away. Not because of anything remotely tied to the historical footage played and re-played all day yesterday, but because of a terrorist who has invaded almost her every thought. I closed my eyes when my eyes passed over that photo, a photo that is now as much a piece of historical footage as my own memories of that day 10 years ago. The innocence Pickles has lost, and can never have back only exists in that photo and others like it.
Yes I put headphones on to tune out some of the audio from those television replays. I also put them on because I didn’t want to hear the phone ring. I didn’t want to know there had been another therapeutic hold, I didn’t want to hear her crying, or…as I did end up hearing…my child screaming in what can only be described as fear and…yes…terror.
Not terror because of the bad people who wanted to hurt us as a country, and as a people, but terror because of other bad people. Bad people who only live in Pickles mind. Bad people who I can, and will say with 100% certainty are more evil, more cruel, more out to destroy and do more harm than Bin Laden, Saddam, Momaar, Mussolini, Hitler, Attila, Pontius Pilate, Brutus, you name them and I promise you like I promise you the sun will rise in the morning, they have nothing on terror, nothing on evil like the bad people who have taken over the mind of my 7-year-old child.
There is no axis of evil, there is no…”cross this line and I will…” threat. None of those things are there in the mind of a child. It’s just not possible. Pickles doesn’t understand any of that. Thank God for small favors. I guess. Although tonight, or I guess since it’s after 1am, I should say this morning; I will be honest, and it’s an honesty I imagine someone will find something about to take offence at; but this morning I wish…I so, so, so wish the terror I had to explain to Pickles, the monsters I need to hug away were bad men in far away countries. Instead of the terror brought on by bad people who couldn’t possibly live any closer, and who will never be taken away by even the most highly trained, brave and specialized Navy Seals.
Jani's Journey
The story and journey of a beautiful little girl who shares her life with Schizophrenia. This family is truly amazing, and they are a constant source of inspiration and hope for both Pickles and myself..
The Mindstorm
A Mom’s blog about life with a teenager with schizoaffective disorder. Chrisa is tireless advocate for her son and all children and teens with Mental Illness.
