My Daughter’s Immortal Soul

Things have improved for Pickles. Sort of.

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.


About picklesprincess

I'm older than I'd like to be, and most days I feel even older than that. I enjoy about the same things as most of you. I read as much as I can, I spend my free time with my daughter and my dog when I'm not teaching or writing. This blog is written in hopes of sharing what a neurobiological illness (mental illness) does to the life of a young child and her family. And to educate people about what it means to love a child, another human being unconditionally.
This entry was posted in December 2011 and tagged , , , , , , , , , , , , . Bookmark the permalink.

7 Responses to My Daughter’s Immortal Soul

  1. Jenifer says:

    Not that it helps much to say that I feel you, but I do. My oldest son is almost 14, and even Clozaril doesn’t seem to be helping his psychosis. We’ve been locked in this never ending struggle since he was about 5, and he has only been hospitalized twice, because I chose to deal with everything at home, and homeschool him, too. My younger three children have suffered for this. He was hospitalized once in 2008, and the second time, just this September, he was in for 42 days. The best we have still is Mood NOS and Psychosis NOS…and possibly treatment refractory. He has gone from a 110 IQ when evaluated at 7 to a 60 just two weeks ago.

    It is so tough to find support, I know. Hang in there. Feel free to become my friend via facebook (Jenifer Wheeler Walsh) or check out my blog at http://www.ajourneywithmentalillness.blogspot.com. Blessings to you and your daughter. I wish the best for you.

  2. Robert Hernandez says:

    Heck of a story there, Kirstin. All things being whatever, I wish you and yours a peaceful season, no matter where the Pickle Princess or you may be.

  3. motherscurse says:

    As always, beautifully and painfully written. I wish we lived closer so I could be with you when you cry over Pickles’ illness and the fact that she cannot, at this time, be with you. I truly understand, my dear friend, what you are going through and how hard this illness is. The fact that you are additionally a single parent makes it all the more heartbreaking of a story. Someone else who has a daughter not much older than mine, who has schizophrenia, once told me that getting through all the years of the illness were so hard and got rougher each year until they got about halfway through 8 years old. She encouraged me that my daughter might also reach a better place when she was about 8 1/2 to 9 years old. I don’t want to rock the boat here or anything, but the last time my daughter was hospitalized was 5 months ago, which is HUGE, and she had just turned 8 1/2. She will be 9 next month and although she has times that are worse than others and sometimes she is hallucinating and dissociating so badly that it takes awhile and a lot of hard work to “bring her back”, but we are in so much better of a place now than we have ever been before with her. 7 years old was the roughest year by far, 8 started out rough, but the last half of 8 and going into 9 has been getting better. I pray this will be the same for Pickles. I know that if this theory is correct then you still have about a year to go of things getting worse before they start stabilizing and getting better, but I wanted you to know that it CAN happen, it DOES happen, and there might be a day in the not-too-distant future where Pickles will be able to come home and live with you again and not have to return to RTC or inpatient again for a very long time and you will have her stabilized on her medications and you will both be in a better place than you’ve ever been before. It might not be as good of a place as what most parents would expect to have with their children, but our daughters are in a special category and most parents will never understand what we go through daily with our daughters’ illnesses or how to get through all the days we spend alone away from our daughters as they are inpatient or RTC. I am glad to be able to call you my friend and I will walk this walk with you and be there next to you, in spirit, as we get through this together.

  4. secretsthatshouldntbe says:

    Nothing is more beautiful than a mother wishing the best for her daughter. My parents were in a completely hopeless place when I was in a psychiatric hospital a little over four years ago and I am sure they know your pain quite well.

  5. mariah says:

    Thank you so much for sharing you story and pain. I just happen to stumbl across this site and am so moved by you story. I am also a single mom with 3 teenage boys who all have Tourettes Syndrome and ADHD among other things. Anyway I just wanted to thank you and wish you all the best with Pickels…a mothers love is never ending <3 she is lucky to have you.

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