Saturday, August 27, 2016

Stay...

We had a some good moments with Storm a  few weeks ago, and those moments are always bitter- sweet.   It's honestly been years since we've seen him functioning that well, we had almost a week of just happy moments with the light in his eyes.  It was like he was back with us, but it didn't last very long.  This is the story I've been re-telling the Dr's for years, like a broken record--but we are still far from being heard.  Explaining how my son has periods of functioning for a few days and then switches to an intense drive to decorate, with a need to buy things, he starts talking very fast and has so many ideas that he is overwhelmed by them at times.  This then switches to him becoming extremely irritable, angry, unreachable and sometimes dangerous when he is in a rage.   It's hard to talk about these things, but it's even harder to live through them every day.  It's akin to losing your child over and over again, without knowing  how or if we will ever be able to help him.  This poem expresses what it is like loving a child who has a mental illness, what it's like to live through the storm, over and over.  We are in the midst of it ...



                                   
                                     Stay


When time slows down and the autumn leaves sway,
               Like the changing of seasons, my heart aches, "please stay."
In your deep gentle eyes, like a tide near the shore,
               I ask you to linger, just a little bit more
Like the breeze brushing past me, a kite ready to soar
              I wish to be with you, the way it was before
For a moment I held you, I saw you were there
             You knew me, you saw me, inside there somewhere
Briefly we laughed, we cried, we embraced
             I desperately wanted to keep you,
To stay in this place
             If I could capture this moment and hold it in time,
I would stay here forever and you would be mine
            The love that I love you with, binds me in chains
While I helplessly watch you, destroy what remains
            My gentle sweet boy, with the sweet humble eyes,
Taken away to a place we can't find
            A place, of forgetting, a place of lies
A place where you hate us, a place we despise
            A place so unreachable, where you can't hear
A place where you're lonely, full of great fear
           I've tried to reach you, I've tried to get in,
Yet love cannot pierce what holds you within
           I claw uselessly, desperately to unlock the door,
That holds you in darkness, until you are no more
           I look in the same eyes, once full of joy
Looking back full of hate, an unrecognizable boy
          My world getting smaller, my heart full of grief
I long for your freedom, for peace and relief
          I feel your deep sorrow, your anger and pain
Flooding your heart like a down-pouring rain
         In the midst of the storm, I can't find you at all
I know that I've lost you, you're deaf to my call
         Yet I hope, beyond hope, as I look for the light
I hold out a candle, I wait out the night
         I pray that I'll find you, when the storm finally clears
I ache to just hold you and keep you near
        Then I see it, I see you, like a flicker of light
And I run to embrace you, and I stand up to fight
         I brush off my injuries, bind up my wounds
Walk into the fire and reach for the moon
         I grasp through the darkness, I run through the deep
I pray without ceasing, my child to keep
        Just when I'm close enough, your light in my view
The darkness and shadows, consume what I knew
        If only time could be stopped in its place
I'd linger with you, caressing your face
        Stolen from me, the months and the years
Washed away is your childhood with each fallen tear
         I sit in the shadows, as autumn leaves sway
If I find you again, I'll beg you to stay








Wednesday, July 27, 2016

A Memorial to our Sweet Hen's

I awoke to the sound of my son screaming and crying, he struggled to get out the words, "Melody, Melody," the name of one of our chickens.  Two mornings ago we found them, in a scene that keeps replaying in my mind, leaving a lump in my throat--a scene I am trying to forget.  They were attacked in the night by something terrible, the coop door left ajar; my doing.   I keep wishing I had one of those "time turners" from Harry Potter, in which I could turn back time, secure the door; so to change the events that unfolded because of one mistake.  But I cannot.

I have never been affected like this before, it's the worst kind of sorrow, to have made an error that cost me so much, one which can't be reversed.  I don't do well with the finality of such events.  I know you are saying, "chickens die every day, we eat them, so what's the big deal?"   I guess it's because we raised them from their second day of life, we have so many family memories associated with them.  Who knew such a simple animal could provide us with so much joy and endless entertainment:  "Chicken TV," we call it.

Ever since I was a little girl I wanted to be a farmer.  I guess it was a romantizied idea born out of my favorite children's story Charolotte's Web.  I am delighted by animals, they amuse me.  I am in awe of so many things about them.  From the beauty of different patterns and colors, to the way God even seemly gave them different personalities.

Melody, a beautiful black hen, with a tinted mixture of sparkling colors from blue to red, that would shift in the light of the sun; was definately the at the top of the pecking order.  She was aggressive and always the first to eat and drink.   She would run to our back door each morning.  My husband had inadvertantly "trained" her, by tossing food to her while we were out on our patio one day.  After that first incident, she would litterally come to the back door every day and peck on the glass, begging us for a treat.

Daisy, was our fat with feathers, white Brahma; basically a show chicken: solid white with a black scarf of feathers wrapped around her neck and flairing feathers laced around her feet.  She was quite the sight, and much fancier then what you think of when you think of a chicken.  She was beautiful and not only that, she was sweet.

My little Bug, loved her with a deep girl-child love, the kind that makes an animal as close as your best friend.  This is a love I understand, because she is so much like me at that age.  Daisy was a our chick who almost died but pulled through with prayers, and she was my daughter's constant compainon, whom she held each day as she was sweet and docile.  

And dear Peep.  Little Peep's made his debut riding in a Barbie car around the house as a little chick.  Peep was our blue egg layer and also would allow us to hold her, she looked more like a hawk then a chicken and was beautiful in her own way.  My youngest son, last night, with tears in his eyes said "Mommy, I don't know how I can live with out peep."  And my heart aches.


The loss of our hen's affected me in such a deep way; I am still processing through it and trying to  make sense of it.   But it is hard to make sense of such things.  The more I try the more I hurt.  The more I reach to undo the past the more I ache with regret.  There is nothing I can do to change what has happened, and that is the difficult part for someone who wishes to control things that cannot be controled.  I am faced with the reality that things are out of my control.  Though we all know it, until something like this happens, we don't realize how much we are trying to munipulate the events of life to avoid pain and to fix things that cannot always be fixed.  Life and death are out of my control.  Pain and trauma cannot always be avoided.   I couldn't protect my children from loosing something they loved so very much.

These lessons of life are so hard.  But there is beauty in some of these things and so I grasp for it.
These simple creatures gave us so much joy and we loved them.  I didn't realize my affections for them until this happend, or how I miss the pecking at the door and the actual personalities that were in these individual birds.  I am amazed at the Creator God, that creates beautiful and amazing animals.  He could have just created animals and left it at that.  But He did more then that.  He intricately designed them in such amazing ways, with beautiful colors, with actual traits and personalities that are unique to them.  He created them for our pleasure, indeed, we were blessed by them.  They made us laugh, and now they cause us to cry, because they meant something to us.  They are His gifts to us and I am astonded; that He does this, that He reaches down to us and blesses us with the gift of pets, simply for our enjoyment.   That is personal and I feel in it my pain.  I am touched by His handywork and I can't deny the impact it has on me.

I am reminded that I am human, and I do make mistakes.  I am reminded that some mistakes are deeply painful, with no way to turn back time and undo them.  They carry a weight of darkness, if they define me, because they are final.  Am I a horrible mother because I forgot to close the door, which lead to the death of our beloved pets.  I feel like one, I do.  I am not good at giving grace to myself though I give it to others freely.  Thank God for His grace, I bath in it, I take it in, I let it wash over the darkest mistakes that I make, knowing that He is GOD and I am not.  Is it really ALL up to me?  Ultimately He is in control.  He could have let the preditor get hit by a car, He could have woke me or helped me remember I left the door ajar.  He could have made the neighboors dog bark, but He allowed thing this to happen.  And that is an entire different post isn't it?  That He allows pain and suffering in the world, but He does.  He is in control not I, and I find freedom in that.   I find freedom in trusting in His plan as He allows it to unfold.  Because He is God I will trust Him to work this out, already it has brought the kids and I closer as we hold tightly to each other to get through this.

I thank God for the sweet times we had as a family, laughing at their chicken antics, playing with them, caring for them as He entrusted us to watch over them for their short time on this earth.  We connected with each other enjoying them together, and the whole neighborhood has enjoyed our small urban "petting zoo".  Truth be told, we were better because of them.




And I must share a picture of our sweet survivor Pepper, who has a dear place in our hearts because she is on the lowest end of the pecking order and is always picked on.   I bandaged her wounds up and we've been keeping a close eye on her injuries.  She has sure showed her strength and she's pulling through so far.





Sunday, May 8, 2016

To the Women in the Trenches-- I honor you on Mother's Day

A few weeks ago my son was admitted to the Day Treatment program again, if you are unfamiliar with such a program, it is the step down intensive out-patient program for children who would other wise be admitted on the psychiatric unit, who have both mental health issues, as well as special needs.

It was there that I sat in a room full of parents I had never met before and yet was instantly welcomed into a club I never intended to be a part of.   The first day I sat in a room full of strangers and pored my heart out, overwhelmed by the difficulties I face daily, parenting a child whose behavior is erratic, unpredictable, and sometimes violent.  No one sees what happens behind closed doors, but these mother's understood exactly what I was talking about.

There was no judgement in this place, only grace and acceptance.  As I shared my story through controlled sobs the other mother's nodded, their tears of understanding streamed down their wearied faces.  They didn't offer solutions or strategies, they just sat with me in my pain and weariness from the toil, and sighed with a sense of "yes, we've walked where you have walked."   Strangers, gave me hugs, exchanged phone numbers and instantly became friends.  In the most unlikely of places, the psychiatric unit of the hospital, I found solace in the comrades, of those I'd never imagined would be so.

I saw a strength in this place that I have never witnessed before.  The strength of women who are raising children with special needs.  Some of these special needs are autism, some are children like my son, who are "autistic like," but don't fit into any exact box, they have sensory issues, they have emotional dis-regulation, they have difficulty communicating their needs and emotions, they are explosively angry and destructive at times because they are overwhelmed by so many things that we can't understand.   Some have multiple diagnosis's like ADHD, OCD, and bipolar. 

These are mother's whose pride was ripped to shreds long ago.    We couldn't brag about our children's milestones, accolades, or academic achievements.  Rather, in the early days, the preschool teachers phone calls shocked us with concerns about speech delay, the inability to concentrate or sit still; and for some, already being kicked out of preschool.   Yes, some of these mom's children had been kicked out of daycare's and multiple preschools due to their behaviors.  

These are mother's who get calls from the school--"your son hit a student again today, your son can't sit still, you need to leave work and come pick up your child again."    These are the mother's who work multiple jobs to make ends meet,or are afraid they will lose their jobs because they have to pick up their child again.  These mother's are doing the best they can, yet sometimes, to the outside world, their children appear to lack discipline, or just need "a more firm hand."   

Yet as I observed the women in this circle, I saw a resounding familiar theme.  Each woman had gone over and above to access help for their child at an early age, sought early intervention, worked tirelessly with the school and with Dr's, and therapists and teachers to help their child.  Many had spent countless dollars and resources to get testing for their child, to do alternative therapies, to do everything in her power to help her child, take parenting classes, trying every method of discipline, read every parenting book, tried every diet.  Yet we all ended up in this place, in this circle on the hospital floor having our child admitted yet again, for things our unconditional love could not control or heal.

None of us mother's asked to be here, nor did we ever dream that the babies we carried in our womb would be suffering from the things that they suffer from daily.   I never knew this side of mothering, until I was cast into it, trying to make sense of my child's pain and special needs which I'm still struggling to understand.

This isn't the typical Mother's Day post, sweet and happy with a bunch of beautiful children surrounding a smiling mother.  This is the real deal, that commercialized holidays can't change--even for a day.  It's the sweat and tears that those of us mother's give daily to meet the needs of our typical children, while balancing the needs of our very special children--whatever they have, be it autism, medical needs, or mental health issues.

I honor these mother's today, the women in the trenches with me.  They are some of the most beautiful people I have ever met.  They feel isolated, because they can't always leave their homes on the days their child is not well.  They may not be able to take a break today because they have no one to watch their child with special needs.  They are the women in the grocery store, crouching down to help their child who is having a melt down because of the sensory over load of being out in public, they are the mother's who are apologizing to you because their autistic child just pushed your child on the playground.  They are the mother's who love their children more then anything, but their own child may not hug them, may hit them, may tell them "I hate you," every day.   They didn't get breakfast in bed or a card today.  They may have woken up to screaming, kicking and two hours of tantrums as I did this morning.  

They don't need sympathy, that is not why I am sharing this difficult post.  I'm sharing this because I think sometimes we forget what happened in that circle, is what is needed most.  We need each other's support and love, and we need each others understanding.  We also need more people to realize the shear number of children that are actually fighting mental health illness in this country as well as Autism.  I know that Autism is not a mental health disorder, and because of that, awareness has been increased and support has been granted.  On the flip side, there are just as many or more children with sensory processing issues, bipolar, ADHD and other impairing special needs that are not given the same recognition or help.   There are certainly not enough resources or help for these children or their families.

My son has been hitting me every day since we were discharged from the hospital early this week, some might think he's in worse shape right now then when he was admitted, but guess what--the insurance company told us our allowed time on the unit was up--so he was discharged before we could finish getting him the help that he needed.   So, we are left to try to figure it out on our own yet again.  

I can't express to you the countless other mother's who went home in worse situations then me, with children who have been kicked out of schools, have multiple court appearances, only for the parents to try to figure out on their own how to help their aggressive and struggling child at home.  Something has to change as there is no respite, and often no adequate help for these struggling families.  My eyes were opened to a side of mental illness in children that most of us have never been exposed to and would wish to ignore, but it is very real.

How can you respond?   This is a call to action not sympathy.  The Bible says, "To him whom much has been given, much is required."   Count your own blessings, and then ask yourself if there is something you could proactively do to help a mom that you might know who is the parent of a child with special needs.  You could talk to your church leaders about starting a once a month respite night for parents of children with special needs.  You could volunteer to help support one of these special children so his parents can go to a church service.  You might just offer an encouraging word to a mother whose child is having a melt down in the grocery store.   You could start a support group for other parents in your school or your community.  Perhaps you could do something even more practical.  You know what you are capable of--but maybe you could stretch yourself for an hour or two and give this mother a break she hasn't had in months or years.  Maybe you could invite that difficult child in your school to your child's birthday party and try to incorporate games that everyone could participate in.   There's a lot you can do, if you just look around you will see the needs.

To the Mother's in the trenches, I honor you.  I honor your courage and bravery.  Many of you do not have the support that I have from family and friends.  I am in awe of you.  I would challenge you to commit to take care of yourself.  So many of us are giving up our own identities in the fight to help our children.   Only recently did I realize that I was entering this sort of pit, and I knew I needed to get help.  Sometimes we have to humble ourselves and ask others for help, to tell our family exactly what we need.  You will find that many are willing to help--they just didn't realize how hard things were for you.  People can't help us if we don't tell them what we are going through.  I challenge you to be open with your story and your struggles, so that we can change the face of mental illness in this country and we can get help and support for our families and struggling children.  I also challenge you to get up early and walk, to eat healthy and get sleep and just physically take care of yourself so you can be the best mother that you can be for your other children.

Lastly, you are not alone.  Please comment below so we can all support each other.   You are deeply loved and cherished by the very God who created you.  I know that it's hard to understand why He has allowed these struggles in your life.  I don't pretend to be able to make sense of it, but I know that without the knowledge of His love I would be truly lost.  I hope that if you do not know Him you will seek Him out and find the grace that only He can give to meet your deepest needs.