Thursday, July 5, 2012

Soul Cancer

Tonight as I bake cupcakes at mid-night for Bugs play ( because isn't that when most sane people bake cupcakes.) I started thinking, and then the thinking got passionate, and then while my confections baked...I decided to word vomit up the feelings I keep on pushing down...AND HERE YOU HAVE IT...

lucky you.

In our community there is something so heart breakingly tragic going on with a teen girl that we know and love personally. She is an AMAZING, talented BEAUTIFUL young woman, that is such an incredible leader and example to the youth in our area, just last year this girl organized a dance for relay to life, because she was inspired. One year later she has been struck down with a debilitating disease, that has been touch and go daily for weeks and weeks. I and our family pray so much for her daily. It has been such an incredible opportunity for my kids to work on building compassion. Through service, they have helped me plan and put together freezer meals, recommending their favorites. I love this girl and her family.

And as I read another update and saw so much love and support and amazing rallying behind this angel of a girl....I got jealous.

Yep, I did.

Not that ANY of the support, love and prayers that have been showered upon this sweet wonderful girl are not incredible, I continue to add my own, it's just that I began thinking about our battles last summer, with our teenage daughter...and my heart started to hurt.

You see, losing Papillion was hush, hush. The 10 hospitals, multiple suicide attempts, all of the pain, and scares, and scars, all of the visits, and hopes up, and then dashed were weathered alone.
When she finally disappeared from our home and community, there were no questions asked, no prayers of support, no phone calls...she just materialized into thin air...because well, we just don't talk about mental illness now do we?
It was the loneliest thing I have ever been through, with very little validation out side of other trauma parents...I get the “People don't know what to say.”....but even if they just saying THAT...”Linds I am so sorry I don't know what to say" would have been something...instead of avoiding me in the hallways at church, or changing direction when come face to face with me in the grocery aisle.Or completly stop being my friend...
Mental health is so isolating, but it is time in 2012, for it not to be...really.

If my daughter had, had Cancer, broken both legs, even terrible asthma, we could talk about it, and everyone would nod their heads sympathetically, ask questions, offer prayers, help, love...
But when it is a cancer literally eating away at someones soul, future,emotional health...when it is a broken brain, when your child can't take a full, deep breath because trauma has stolen it, well, that is something put in a corner, whisper and generally not ever bring it up.....and

It's not like everyone on this planet has never known someone that has not suffered from abuse, depression and even post pardum...we all know someone...whether it be a former soldier that gets skidish around loud noises, an Uncle that gets angry faster than needs be, a sister, Aunt, Grandmother or Mom that has quirky things she has to do, for “things' to be alright...getting hurt, being a little messy in the head, is part of the human condition we don't talk enough about, and we need to.

Medically in the last 100 years we have made leaps and bounds in the physical needs and healing of our bodies...but what about our brains? Our souls? There isn't enough demand, because no one is standing up and saying THIS, THIS NEEDS WORK, this need to be fixed, THIS needs to be a bigger priority than magic diet pills. It is not happening fast enough, it is not being prioritized.

I agree some amazing, AMAZING work and books have been written in the name of R.A.D., P.T.S.D, O.C.D and all around trauma and the effects of it...but why? Why is is so much easier for a parent to get a 504 for a child with A.D.H.D. That is hyperactive and struggles concentrating, than a child with severe trauma and behavioral and attachment challenges?

one word, shame.

Our shame as parents being judged for our kids behavior, or that we "did" this to them, our fear and shame as a community, that if all start talking about our emotional and mental health, that judgment will be passed. No one judges someone with Cancer, “well obviously they weren't doing something right.”
That does not happen, why? Because what they have is physical, and obviously not anybody’s fault.
BUT, Nor is what happened to my child...Or to me for that matter.

My name is Lindsay. I am parenting children with severe trauma, anxiety, depression, psychotic tendencies, suicidal ideation, addictions, bulimia, anorexia, ADHD, Sensory Processing Disorder,Hording, Post Traumatic Stress Disorder, and they are surviving by the skin of their teeth, everyday. Their diseases are devastating, everyday is an Emergency room of Soul Triage, deciding which “bleeder”/trigger must be dealt with first.

My children have soul cancer. Their illnesses and struggles are not their fault or a result of my poor parenting. The statistics are stacked against them. There are not nearly enough resources, well trained Dr.'s, or therapists around to suffice...but we are fighting this with everything we 've got, and not quietly. I am not going to be ashamed with or for my children's needs and
illnesses. I am going to talk about them, I am going to get the word out.
And hopefully someday the help, that will heal them, and other kids like them...because when we don't shout, and demand, and talk about what needs to be done, without shame, without fear of judgment, that is when the possibility to be heard and have change can really come...


  1. Love you to pieces Minds. I hear you and echo your cry.

  2. Lindsay, so much I thought about saying, but would much rather just look you in the eye, touch your hand, or sit with you awhile.
    This world is a mess. Rallying around a family with an illness, lots of people can do that, it's good to do that. Rallying around families with the stuff you mentioned - waaaay more difficult, these illnesses do not "run a course" and then the person gets better. Hard stuff, understood by fewer people.
    Never forget us. You are seen and you are loved - you , Trevor, and everyone of your kids - ALL of them.

  3. Totally agree- I found this out two years ago when I had my own panic attacks and anxiety. I felt so alone because I thought I was a freak. BUT God made me a talker and I started talking about it with people and what do you know, lots and lots of people struggle. They are just ashamed. And now as we wait a month and a half for a freakin child psych appointment I am stuck reaching out to people around me - and I'm finding out that my kids aren't so unique in their mental problems either. People just don't talk about it (I'm not "people"). I'm glad you aren't people either :)

  4. Can you feel the hugs, cause I am hugging you to pieces. Dealing with a mentally ill, traumatized child is mentally and physically exhausting. Having to buffer what is typical day to day life is often what pushes me over the edge. I think I often hold back in sharing because I don't want her judged by her behaviors. This is such an isolating road. So thankful you are in my world!

  5. Well said. I feel the exact same way.

  6. Mental health issues are the loneliest issues to deal with. We have daughters with physical disabilities and daughters who suffer from PTSD etc... they both present their challenges. But by FAR the emotional challenges are much harder to deal with.
    We are fortunate that in our church we talk about it, and refuse to be ashamed if we have to stay home from services because somebody who is 12 in body, is 2 or 3 in her emotions that particular morning.

    My sis in law and mom in law were both severe schizophrenics. This was back in the day of draconian methods to deal with such issues, and great shame was surrounded by mental illness. I refuse to be ashamed. I am so proud of my girls who have been through so much. Such diagnosis should only secure our compassion. I hope and pray that we who deal with such things will be pioneers in educating the public that this is a REAL problem not psychomatic and certainly not something to be ashamed of.

  7. Lindsay, I hope this was even the slightest bit healing for you to write - you are brave and courageous every day in working to heal your littles. I needed to hear more about your experience with this - it has been on my heart lately to do something special for Mamas who have lost children (we have had a lot of them in our community recently) I also recently found out from an insider that our county is on a "watch list" for suicides and that we have a 50% depression rate - I was furious, because none of it is reported in local news sources nor is it talked about among community members. As I look to put something together for the Mamas that have lost their kiddos through death by physical illness, I am going to add those who have lost them to suicide and through relocation to residential facilities. The problem is, it will be oh so hard to locate these families since it is not talked about. If you have any thoughts on how to "find" these families in my local community, I'd love to hear. As I struggle to parent my three, I'm always in awe of "watching you" do such an amazing job of healing your tribe - you are an inspiration!

  8. I've thought much about this, too. I'm just heading into the land of teenagers and already have one in the hospital. I've thought much about this. I've been jealous of the attention and support given to the obviously special needs person in our area. And this time I broke down and asked for help. There's nothing people can do for my son, but I did ask for help with my house and yard because I just can't keep up. We'll see if it materializes. I do know the person who did the needs assessment gets it at least at a professional level...which I'm thankful for.

    Love you so very much!

  9. Eeeek stupid auto-correct! I'm not renaming you I promise. It was late and I was over tired and posting from a stupid device that thinks it knows better than I what I want to say. Please forgive me. Wish we could be there for the play tonight! You are an Amazing Mom! Hugs!

    1. LOL..I knew what you meant! Hugs right back at you Cynthia!

  10. Beautifully said. I went through the people avoiding eye contact and crossing the street with my first family. I was afraid of violating my children's privacy. The second time around, I am approaching it differently. Everyone I allow my children ton interact with is educated on their needs before my children have contact. It works better, but since I only have two, it is much easier to do for me then it would be for you.

    I am sorry you went through that terrible summer alone. I was there when my 26 year old RAD was 17, 18, and 19. She finally decided two years ago that she didn't like feeling that way, and found herself a therapist. There has been miraculous healing, but she will never be "normal". I pray that she heals to the point she can find happiness in her life. I am praying your daughter finds this too.

  11. Very well said. You have an amazing gift to be able to articulate what so many of us parenting our trauma survivor kids feel. Thank you!

  12. I wish I would have had these words last summer...almost exactly a year ago today...when we lost J. When his mental illness changed our lives forever, and his choices turned everything into chaos.

    We've lost so much, but few people see it, or chose to see it. "But you're always so strong! And you always have a smile on your face!" I hate that about myself, as if I need to show weakness to get support.

    I feel a responsive blog post coming on.

  13. I am with you about the isolation and lack of support. Its so important to have a community of other parents who get it. Sadly those in our own physical community may not understand the pain involved but please know there are always those of us here on line who support and care for you and others in your situation.

  14. Lindsay - beautiful post, as usual. I'm so sorry that you don't have more IRL support - it is so needed and so missed when it's not there. I'm not sure how to fix this problem, but I know I have tried to be open about our struggles and have been lucky to find a few locals who are also struggling with mental illness and can relate a bit to our struggles with Andrew. Sending you and your family lots of hugs and prayers!

  15. Yes! Yes, and Yes!

    I do get jealous when I see the community rally around a family in need. And I feel horrible! that I feel that way.

    I'm very vocal about my sons difficulties. I know it makes people uncomfortable. I know some are scared of him. I know they don't know what to say or do. I get that. Mental illness, trauma, RAD, etc. isn't clean. You can't pack it neatly in a box. You can't make it pretty.

    I don't know how to make people see our needs as valid. As long as others continue to judge our kids, and our parenting, I don't think we will ever be considered worthy of rally.

  16. Brought me to tears. I am there. I feel that pain.

  17. I agree....sort of.

    I'm a pretty private person, and would not want people to be speculating on anything my children are going through, frankly. BUT, if they had cancer, I would also want to keep that private.....and good luck to me! For some reason, very little is allowed to be private any more. I cannot believe the questions I hear people ask about other people's scars or operations, or disabilities. NONE of their business! (I think.)

    HOWEVER, official support is something different, altogether! It is wrong that people need to sell their houses to put their children in residential treatment. It is wrong that Sergei has to go without contact lenses, and my husband without the sticks to check his blood sugar, so that we can afford for Anastasia to have therapy.

    In Michigan the governor just signed a bill that requires insurance companies to cover autism treatment. I cannot understand this. It is so unbelievably unfair! I have a cousin who is severely autistic; she would never, apart from a miracle, live anything like a normal life - but my kids, with therapy and other treatment would have some HOPE! Instead, we struggle along with a little of; can't afford that. Nothing for him - unless he actually threatens us - THEN we could get help. It makes me want to weep; it is SO UNJUST! I ought to be happy for the parents whose kids are autistic, but I guess I'm feeling too ground down to be. THOSE kids are in school already - getting services! Mine are too traumatized to be in school....and no one cares.

  18. I don't know you but my heart aches for you and your family and all that you have gone through... I know that I can't fix it--but I don't think you are expecting any of us to fix it because if a human being could do that you'd have done that long ago!
    I'm sorry that ignorance and isolation and stigma are still issues when it comes to mental illness and trauma. I know firsthand how isolating it can be--not because of my child but because of my own experiences. There is something going on in my own family right now that makes me feel as if we will never be the same, never find peace but like you, there's that sense I get that people wouldn't get it, or they'd automatically judge when judgement is soooo NOT what is needed!!
    Do you still get to be in touch with Papillion? Is she receptive to that at all or do you not feel it is in anyone's best interests right now? Do you feel that ultimately she will get to come home to you? (As you can see, I'm not fully aware of the situation--sorry!)
    I am sorry for your pain and I wish you peace amidst the pieces of your broken heart.

  19. I love you, Lindsay. I truly believe that because people don't have something wonderful to offer, they offer nothing instead. Not only that, it's the whole 'if I acknowledge this, it could happen to me too' attitude. It's like people are afraid it will rub off or something. This is not to excuse the response, because it IS inexcusable. I'm really sorry you weren't wrapped in the arms of women with love, acceptance and compassion, my friend. Continuing to pray for you and your girl, and praying for the hearts of people who look the other way. (((hug)))

  20. Have you tried being open with your friends and family? People can be loving and compassionate, when given a chance. My BFF had a rough go of it growing up -- several years in and out of hospital when we were in high school for a mental illness (anorexia) with a horrific death rate (like 15%, apparently one is less like to die if they're schizophrenic)... but her and her fam were showered with so much live and care. My foster fam (yes, I grew up in the system) helped organize the meal delivery for her family, tons of outings for her siblings (so they could get out and do the fun stuff they'd be doing with their parents... had parents not been sitting vigil at the hospital, attending 8 billion therapy Appts with their hospitalized sister/my BFF in a town 2 hrs away), etc. it was exactly tge same support for her family as would've been given to a family who had a kid with a physical illness.

    I'll pray for you and your fam and hope you receive the same kind of support. Hopefully an awesome support network is out there, just waiting to help should u be willing to ask!!

  21. There is NO ONE more open than Lindsay.

    Just saying...

  22. My name is Marty. I am estranged from my oldest adopted daughter after she was sent to an RTC for sexual abuse issues. I am still parenting her younger siblings and every day is a struggle. For them and for me. Thank you for saying what so many of us don't feel like we can say out loud. Hardest work I've ever done.

    I'm linking you on my blog.

  23. I popped over from Marty's blog . . . and want to say "Thank You".

    I would like to ask if I might reprint this post (with links) on my blog. My readers need to hear your heart, as right now I don't even have the words to say.

    Just. Last. Week. we took our 10 year old daughter to live at a Residential Care Facility . . . 600+ miles away. Heartbreaking . . .

    I haven't even written about it yet, as I just. don't. have. the. words.

    thank you,

    mama of 12 (ages 10, 10, 12, 13, 15, 19, 21, 23, 23, 25, 26, 28)

  24. Thank you for this post. As someone who has kept many secrets about many people close to me and myself in regards to mental health I totally get it. One morning in church someone in the congregation got up and said we had to pray for XYZ because their nephew committed suicide. An outpouring happened. But of all the churches I've belonged to in my life (which is many) this is the only church it could probably happen in (a church rocked multiple times by sexual abuse scandals and traumas, they have been forced to acknowledge we are a broken, fragile, people who heal by truth and vulnerability with each other). This was the first time I saw mental illness faced without shame. It happens sometimes, but more often than not we who face it with family, friends, ourselves, face it alone. You are in my prayers. No shame here.

  25. Thank you, thank you, thank you!

  26. I am in awe of this blog... I have told so many other trauma mommas about it, because it is the reality of healing and helping our littles that we need each other to lean on or to laugh with(even if it is about pee and poo). So true about the support, because most people don't and can not understand. I didn't just 18 months ago. Keep on trucking sister, one day at a time... and I really hope to meet you next year in Florida at trauma mommas :)
    Prayers to you and yours