Sunday, May 22, 2016

The Silence of RAD

Its been a very hard few days in our home.  L has been raging more often and creating more chaos than normal.  Most days the noise and chaos of RAD can be overwhelming to those living with it.

The only problem is, our family can't share some of the hardest moments we endure...because of the way it would look to the world around us.

We live under the silence of RAD.

I've talked to so many people who have lived their own types of hell.  They've lost their mother, their father, their sister, or brother.  They've lost a child or spouse from sickness or a terrible accident.

I've talked to people who have recovered or are recovering from drugs or alcohol.  People who have lost homes, or spouses have cheated and caused abuse and broken up their family.  There are people who live with unending health problems or pain or the longing desire to have a child (I live with these as well).  There are people who don't have enough money to pay for their child's needs or wants.

The list of trials in this life is unending.

This life we live is messy and painful.  It is heart-wrenching and overwhelming at times.  It so often brings us to our knees in fear and hurt.

Sometimes we just don't know how much more we can handle before we break.

We all suffer, we all endure pain.  It's just that sometimes that pain goes un-noticed.

The problem of living with a child who may not be sick in body but in mind is, so few seem to understand.  So few can see the toll it takes and most wonder why we seem downtrodden or sad most days.  I know so many moms in my little mental health world who happen to be some of the strongest and most loving moms I've even encountered.  Their quiet strength and struggle is real, it's hard, it's painful, it's fearful and most days hopeless.  I've seen those same mothers not have the support of a husband, mother, or best friend.  I've seen those mothers cry in desperation over something even the professionals don't seem to want to understand.

The silence of mental health problems kills over 17 million people each year.  And yet, we call them weak and selfish.  It's unspeakable and taboo.

As I have watched so many go through the various trials of this earth, I have also seen amazing outreach to them.  The kind of empathy they receive is full of love and from the heart.  Their financial needs are met, they are given meals and help for their home.  People send cards and flowers.  They are given awards and praise for their endurance and faith.  Their courage astounds many and they are only loved more for their pain.

This is how it should be when anyone suffers...giving love and empathy without judgement.

This, however for the most part, is not the case for mothers of RAD children.

Our pain and dark moments happen in the seclusion of our home.  No one sees it or hears it.  No one can fathom that a child, as young as three could be a source of hurt and constant stress to her family. No one can come close to understanding the constant pain a five year old can cause their mother because of how cruelly they treat her.  No one can truly empathize with the mom who has to hold her child down for over an hour at a time so the child isn't a danger to herself or others as she writhes like a wild animal, screaming how much she hates her mother and tries to physically hurt her  No one can even think to believe that a seven year old spits on her mother and calls her dirty names, leaves bruises over her mother's legs from kicking her, and draws blood from pinching and scratching her arms.

How can this even be possible, so many question?  After all, Christ wants us to become like a little child.  They are perfect and full of love and forgiveness.  People so often think, "It must be that they are bad parents or maybe abusive."  They think, "I would never do that, or I would never allow it.  I would do it better than them all with a smile on my face."

In the end we are seen as weak and sometimes abusive.  We gain empathy from so few (and you few mean the absolute world to us).  We question our every move out in the world and worry how we will survive this every day battle without having social services called on us.

No one can know to come to our rescue when L is hurting us with words and punches.  There are no cards or flowers of sympathy.  There are no fundraisers for her expensive therapy or offers to help us in our home. Most people avoid us and brush us off as crazy or too emotional or in the end just don't know what to do.

Parents of RAD children suffer in a bitter silence most days.

Our world is too strange and sometimes unbelievable to those even in our inner circle.  Our hearts break daily with the unknowns.  We fear social engagements; we fear questions and false judgement. We fear our every move as we are in constant offensive or defensive mode, trying to outsmart our beautiful and very intelligent RAD children.  We are exhausted and stressed daily with the worry of what RAD will do to our children's future.  Will they get better or will they get worse?  Will we lose our L forever because of the life she will live?  Will she hurt my other children or someone else's? Will she never know love?

She is seven and she tells me almost daily she wants to die.  She talks freely of hurting me and how she would rather me be dead than be her mom.  My hell is the worry of whether she will do something about her threats.  My pain is knowing that if a knife goes missing, I have to assume it's her.  My anguish is missing out on having a child who can feel love and give it back.

L has never felt the joy and fun of being a child.  She has never known how to love or be loved.  My L suffers just like any child with a debilitating sickness suffers.  Her life has been nothing but a show to those around her.  It is here, in our home, she can be herself.  Here in her home, she writhes and fights against those who love her most.  Here in our home, where the cries of a mother and father pleading for her healing can be heard.  Here in our home, is where we feel and endure the most pain.

The silence of RAD has become my everlasting companion.  It has become my story.  It has become my life.

"A deep sense of love and belonging is an irreducible need of all people. We are biologically, cognitively, physically, and spiritually wired to love, to be loved, and to belong. When those needs are not met, we don't function as we were meant to. We break. We fall apart. We numb. We ache. We hurt others. We get sick." 
Brene Brown

Our daughter suffers and so do we...EVERY.  SINGLE.  DAY.  It never goes away, we never get to grieve we never get a break...this is our life.  This is our misery and growth. 

"Vulnerability is about showing up and being seen. It's tough to do that when we're terrified about what people might see or think." 
Brene Brown
I'm trying to show up.  I'm trying to educate.  I'm trying to not be hurt by those who judge me harshly or brush me off because of my trials.  I'm trying to live my story and I pray we can all see the pain of mental health and be more helpful and loving towards people and families who live with it in silence.  

Having a sick brain does not make you weak, it makes you sick.  And every sickness deserves love and attention.

Lots of love,
Niki




Tuesday, May 3, 2016

Sometimes Doing What's Right For Someone is Painful

Have you ever had to do something that you knew would be SO hard and yet you knew it was what was best?

Have you ever had to go against everything you believe and do something because for that one person it was right?

Our L doesn't like to be with her mom.  Which of course is me.

This has slowly sunk in and I am now starting to understand her a little better.

The idea that a child can for no other reason than knowing that their mother exists dislike their mother seems to go against everything I have ever been taught both religiously and temporally.

Children come out wanting love.  They find those persons they can latch onto and trust and then love begins.

Not my L.  Not any child born with trauma.  Not any child who comes into the world neglected and unloved.  These children look at the world completely different then you and I do.

Getting to understand how she thinks has been one of the hardest aspects of my part in her therapy.  I just can't wrap my brain around the fact that she indeed trusts no one.  Not mom, not dad, not grandma, or grandpa, not sister, not brother, not even God.

The only person in this world she trusts......is herself.

Therefore she think she needs to be in total control of herself at all times.

When I hug or kiss her...she isn't in control of that feeling....however she can control anger, stealing, lying, hurting others, yelling, breaking toys or furniture, crying, throwing a tantrum, peeing in her pants or on the carpet, speaking rudely to mom, dad, our nanny, and her therapist...these are things she can control.  All of us can.

But can we control who we love or who loves us?

No.

And this scares her to death.  She has no say in this strong feeling and so she is scared of it.  So scared, that the one person who has shown her the most love, me, is her mortal enemy.  She in fact, would rather me be dead than give her the love that I so desperately want to give her.

Her entire world is turned upside down and the only way to make her want to turn that world around is to make her world so small that she can feel safe at last and hopefully want to trust me.

In this small world of hers, going out or going somewhere is like taking a child who has cancer and pumping them full of sugar water for their last chemo treatment.  It is actually damaging to the child. Her overactive senses can't trust anything or anyone and so she goes into manipulation or control mode.  You, the outside world, may not see her rage or her anxiety...but it is there waiting to attack the one person who loves her the most....in most cases,  mom. She moves into fight or flight mode and stays there until she can get back to what she knows, her room.  And that's when her rage comes out.

With all of this in mind, we have three other children who live with this, who have seen the worst L has done.  They know her raging fits and have been at the harsh end of her hurtful words and sometimes fists.  They too have suffered as we have struggled to work with L and rarely get a break when we travel with her.  And because of her fear, her anxiety, her rage, traveling with L is a nightmare for everyone, including L.  Thus, we have been asked by our therapist and L's school to travel without her.

When I heard this seemingly backwards idea, I cried.   I cried because it went against everything I knew to be true.  We are a family.  We should be together...always.

They assured me that it was what was best for L and that our children deserved a break as well.

So we tried it.  We went to St. George without our L.  She was here with our amazingly wonderful nanny, who is trained to work with RAD children.  It was a hard trip for me.  Hard because I didn't feel complete and hard because we had such a nice and relaxing time without her.

I felt like the worst mom in the world for enjoying myself.

When we got home, I went into her room, expecting her to run to me in tears of anger or sadness for leaving her there.  She looked at me, I asked for a hug, she casually came over and hugged me as she always does, what I call her dead fish hugs, no embrace (I've never been embraced by her) she simply just puts her arms around me so I can barely feel her.  She then started crying...I immediately asked her what was wrong, knowing that she was going to say, I missed you! Don't leave me again!  How could you do that to me?  But instead she simply said, her nanny had put her in time out that day and she was upset about it.

I was stunned.  I asked her how her week was, she thought about it and said, it was fine, other than being put in time out.

I didn't know what to say.  I was in shock.

She hadn't missed us one ounce.

In fact she had done great!  Her nanny said she had only had a few issues but none were about us.

She hadn't missed at all.  Not one bit.

The reason I am writing this, is, you will be seeing us on vacations now without our L.  And before you jump to the conclusion that we don't love her please know that leaving her is what is best for her and her therapy.

We love her so much we are willing to do what is unpopular and hard in order to help her and our other children heal.

Lots of love,
Niki