Wishing

Yesterday was a difficult day.  There was a staffing at the hospital for progress on my son, and for the next steps to be determined.  All of the decisions are impossible ones, it seems.

I have never been pro-medication.  I am, at my core, a huge believer in holistic and alternative medicine.  I think we approach medicine in a way that is counterproductive much of the time.  How, then, am I faced with having to put my son on Clozaril?  Like other antipsychotic drugs, the side effects are troubling at the very least, deadly, possibly.  

When we started this journey with my son over 7 years ago, I did everything I knew, and then sought out more.  I changed diet for him, I took him to an alternative doctor, I went to the renowned Pfeiffer Clinic.  I read literally hundred's of books.  We didn't even come into medication till a little over three years ago.  Most of the medications have not been successful, one or two have had moderate success.  We have turned a corner, I think.  We are kind of at a "big gun" medication, and if it doesn't produce good results, I'm not sure what the options are from here.  

Seeing my son in so much emotional and mental pain is the only reason I consider using medication.  If you cannot be free of hallucinations, anxiety, depression, worthlessness and  a cognitive jumble, I'm not too sure how to call it living.  Existing, sure.  Living, no.  

I was driving by my son's high school today, and watching the freshmen practice soccer.  Immediately, a wave of sadness came over me.  I wish that I could see Ryan out there, practicing on the field and having fun.  Instead, he is in the hospital, not enjoying himself very much.  Yet, I know, deep down, he is glad to be there.  He feels safer in a place where he is constantly watched, and knows that there are always several people knowing what he is doing.  It feels sad to know that he is so torn.  Yet, there is no lack of pain here.  My daughter is still having a really rough time.  My seven year old had an epic meltdown this evening, and my little guy is having trouble coping.  I am working on paperwork.  An ICG grant application, applications for Social Security Disability, and scheduling assessments for my other two boys.  

I wish that I could fix everything for the family.  I wish that I could take away the pain.  I wish that I could stop managing, and just "be" for awhile.  I wish that I could hear what God wants, so I don't have to guess.  I have faith in God, but I struggle to know my place, what to do and what not to do.  I wish I knew better how to bear this burden.

At the end of the day, no matter what I "wish", I am the only one who can approach these trials with an attitude of understanding that life is painful, but even in pain there are blessings.

I am taking heart in a quote from someone I admire and respect, and have so enjoyed the privilege of meeting: Neale Donald Walsch.  In 'Friendship With God, An Uncommon Dialogue,' he writes: "I tell you, the day will come when you will review your life and be thankful for every minute of it. Every hurt, every sorrow, every joy, every celebration, every moment of your life will be a treasure to you, for you will see the utter perfection of the design. You will stand back from the weaving and see the tapestry, and you will weep at the beauty of it."  That is what keeps me hanging on.

Realizations

I was reading my son's psychological evaluation the other day, more thoroughly than I had the first time.  Reading it brought out all kinds of feelings from within me, mostly sadness and frustration.  I am sad that my son is dealing with so many issues beyond anyone's control, including his own.  I am frustrated that we went so long without knowing exactly what was wrong, though this was for a variety of reasons, and cannot be put down to one factor. Then, I reached the end. 


First, I felt incredulity dawning, then ANGER.  I am REALLY angry.  The reason I am SO angry, is that, on the recommendations portion of the evaluation, the family is given a "suggested" list of things to do at home.  Things like, i.e., put alarms on all of the doors, install voice monitors, and set a constant supervision schedule.  Also, create a better set of life circumstances for my son.  Then, "Parent in a positive, rather than negative way, keeping things upbeat, but being careful not to ignore mistakes or negativity."  Ummm....yeah.  Well, sometimes, when I receive these little "suggestions", I'd love to tell the person doing the evaluation to come to my house and try that advice amid the daily chaos of raising four children.  It's funny to me that they need several staff and cameras and all kinds of other things at the hospital, but think my son can just come back home, and we'll see how it goes.  Two of my other children are so traumatized, they do not want him to come back at all.


One thing the states, the Government, and many professionals in the field have not figured out yet is that mental illness RAVAGES families.  It does not roam sweetly throughout the house, in bliss; it is angry, violent, malicious and unrelenting.  There are days that I absolutely think, "I'm not going to make it." But, I have to. These are my children and if I cannot be there for them, who will?  Not my family of origin, to be sure.  I have recently been effected by several panic attacks a day.  The amount of stress at this time in my life is like nothing I have ever known.  I feel for my son, and am broken over the fact that I know he is so tormented.  I hurt for my daughter, who is a sweet and gentle girl, yet has become sullen and isolated, and is not sleeping.  I am worried about my seven year old son, because I see him struggling all of the time.  My five year old still makes us laugh, but I hope behind that silly facade, he isn't suffering too much.


There are few options.  Many residential group settings are reserved for DCFS wards, and I totally understand it, there are, unfortunately, SO many.  Other facilities are really for the wealthier families, who are able to afford payment of the $30,000 or more a year for their children to be there.  Right now, our only hope is an ICG grant and maybe some social security for my son.  I know that if he has to come home, he will again be overwhelmed and unable to cope.  The reason I know this is because he exhibits the exact same feelings and issues when we visit as when he left home.  I don't want the return for any of us.  I don't want my son to be struggling every day.  I don't want my other kids to be afraid.  No one looks at home as the safe haven it should be, or, they didn't.  My seven year old, who went to school for the first time for 1st grade said, "School is better than home."  Let that sink in.  


Now that my son has been gone for a few weeks, everyone is starting to relax a little.  There is tangible relief.  I am not saying this to be cruel.  People who are not subject to how a mentally ill person functions cannot understand the stress and chaos that each day brings,  not to mention the depression and anxiety.


I realize now how much effort and managing I have provided my oldest son.  I realize how neglectful I've been of  my other children.  I realize how neglectful I've been of myself.  These realizations are difficult, and don't feel good.  Then, there is the realization that my son may not come home.  I realize that is a decision that will have to be made, and it will end up in my lap.  I realize I have to have the strength to do the right thing for all of us.  The question is, can I?

Losing Control

I am admittedly a control freak.  Well, I will say, I was.  For the last year and a half, I have given up control of absolutely everything to God.  Ironically, this has been absolutely, by far, the most difficult year of my life.  I think that there is a time, when you can become so dissatisfied with numbness and apathy, you get desperate.  It has happened to me twice in my life that I can think of.  


During my early twenties, at the ending of my first marriage, my ongoing depression hit me full force.  I was on the verge of a nervous breakdown.  Most of the people I knew then, with the exception of two of my closest friends, thought that it was because of my divorce; even my family believed so. That was not the truth.  My absolute self loathing and desperation not to return to my family of origin was the cause of my debilitating depression.  It took years for me to dig out of the hole I had dug for myself since I was 15.  I spiraled myself into a two year long absence from life.  I went to work, and I came home.  I watched t.v. endlessly.  I hopped from relationship to relationship desperate to hide from what might be awaiting me.  I didn't know how to be alone.  At the end of my two year spiral, I did something out of the ordinary.  I was on the verge of an end to another relationship, and I said, to God, out loud, "God, if this is not what I am supposed to have, please just give me what I am supposed to have."  And He did.  I got married to the love of my life, and had four beautiful children.


The second time was far more recent.  My apathy and numbness stemmed, I think, from the overwhelming feeling that I was missing something.  Not someone, something.  Sure, I was busy with the kids, homeschooling, and the business we own, but I felt really disconnected.  I had read a book, called Crazy Love, by Francis Chan.  Then, I read Forgotten God, also by Francis Chan.  The latter led me to give up and over control to God.  I said, "You can have everything.  I'm tired of feeling so empty, and I need to believe I can do something in this world, something to make a difference. "  Thus began our journey of Safe Families, and 13 placements in 1 year.  Children to love on and nurture.  Families to keep together, or help be apart safely and with compassion.  My introduction to Kolfe orphanage in Addis Ababa, Ethiopia, bore fruit in a son to love and care for via email and contact with other Kolfe Moms.  I have learned how to care for someone very deeply, but at a distance I'm not sure I will be able to bridge in the next few years. I gave up control of my life as I knew it, and I was blessed.


Then, something happened.  My WHOLE LIFE turned absolutely upside down.  We lost our home, moved in with my mother (family of origin from earlier in the post ;) ) and had to give up every semblance of normal that we had as a family, known.  Because of the field we are in, the economy hit us hard.  We have had to struggle with money and debt more than I ever thought possible.  Really, monetarily, we have lost everything, with no safety net. (Even though I tried to keep one in place, it had to be burned through to move forward.)  My husband has had the most difficult three years in probably his whole life and struggles every day to keep it together. My son is hospitalized for threatening suicide with a knife.  My daughter is suffering from years of watching and experiencing the effects of her brother's illness.  My seven year old is seemingly running down the same path as my oldest son who is in the hospital.  My five year old, normally jolly and full of laughter, cries at the drop of a hat, and holds his hands over his ears whenever someone raises their voice.  Now, I have to wonder, is this what I asked for?  Is this what giving up control means?  I mean, in terms of being broken, this is BROKEN.  There are days that I can barely stand.  I am consumed by the burdens all around me, waiting to be swallowed up.  I am crying out every moment of every day, lately.  I am lost and have no idea what to do, or how to fix this.  Then, I realize, I can't.  I can't fix it.  This is beyond any kind of fixing I could ever hope to do.  So, where does that leave me?  In God's hands, I guess.


I pray for my oldest son, that he will find strength and courage within himself, and find a way to love himself through all of his problems.  I pray for my husband, who needs deep love and compassion to heal his life long struggles.  I pray for my daughter, who suffers silently and never complains.  I pray for my seven year old, that he will realize his full potential no matter what struggles may come.  I pray for relief and laughter for my five year old, that he will again know safety and happiness completely.  I pray for myself, that I can find strength, compassion and patience, even when I feel like I'm drowning.  I pray for friends who are family, and the world at large, that even in struggles, blessings abound. 


I'm not sure of God's plan, but I know that my controlling things all these years has not done much except to make me realize that I have not had the effect I've been looking for.  Since I gave up my life to God, things have become more difficult than I could ever have imagined.  But then, I think, what if I hadn't?  Maybe my son wouldn't be in a hospital, maybe he'd still be struggling and come to a point that crying out for help was not an option.  Maybe my daughter would still be grappling with all of the family problems alone in herself, without the help of a compassionate therapist to help her through.  Maybe my seven year old would have run away like he has drawn himself doing so many times.  Maybe my five year old would have lost his laughter entirely.  Maybe I would have become so disconnected and selfish that I couldn't see what was happening all around me.


I honestly never believed things would have changed to the degree that they have.  Good or bad, who's to say?  What looks bad in the short term can actually turn for good in the long run.  Without our terrible financial situation, my son might not be getting the level of help and advocacy he is afforded now because of our situation.  As a control freak, I am used to doing things all on my own, all of the time.  It is difficult to accept help without strings attached, because that is what I learned in my family of origin; everything comes with strings.  


The question is, then, is this losing control, or gaining freedom?  I am still learning.  I am advocating for my son, but I am no longer doing it alone.  I have resources never available before.  I have seen people come from unexpected places to help me.  Maybe losing control is the key to being free.


As I navigate these next months with uncertainty, I know still that we are blessed, even when I grieve that things are not as I would have them.  I hope, in years to come, my son will feel that I did the right thing in giving up control.  I hope that he believes that God is holding him, the way I did when he was so very little.  God, I hope so.

Light and Dark

Opposites.  Light and dark, healthy and unhealthy, big and small.  Everything is relative.  It seems that at times, it is easy to distinguish between the opposites, but I am finding every day it gets more difficult with a child with a mental illness.  While on the outside, the child may look fine, reasonably "normal", there can be a war raging on the inside of that same child.  


It's hard to watch any child suffer, much less your own.  One thing I have found most difficult to deal with, is the wealth of advice that come from others about my own children.  If you just did "this" or "that", then things would be better.  I've heard it ALL..."too strict", "too permissive", "too busy", "not busy enough", "shouldn't have homeschooled", "don't put him in school", and the list goes on.  Not only does it come from strangers, but friends and family, too.  Everyone knows more about my child than me.  Even some of the professionals have had less than sage advice.


Right now, unfolding before my eyes, my child is grappling with enormous difficulty.  A difficulty no child should have to suffer through.  He is now in a hospital setting, for a time, for safety reasons, and while there is some relief for the other children, there is none for me.  I worry all the time about these children, and my son in the hospital.  I know that I cannot control the situation, and I must leave much of my faith in God, that He will be with my son.


While we speak every evening, and visit the allowed three times a week, it is dismaying to see the lack of progress, and realize how ill he really is.  There is relief, too, mostly in the form of validation.  I am pleased to see all the testing being done, and the compassion with which many of the professionals handle my son.  I have dealt with this for so long, being the primary one knowing there was an issue, but getting others to see, next to impossible.  Even with testing I had done on my own, progress was very slow.  It is very sad to know the level of advocacy it takes to be taken seriously when talking about a mental illness.


Speaking of dark, that's what this has been, a dark journey for my son, and for our family as well.  But there is light, too.


The "Light" exists in friendships, support, faith and generosity of others.  I have friends who are willing to back me and help me when I need it.  I have a therapist working with me, gratis, because we don't have the resources to pay her at this time.  I have people all over praying for Ryan and our family, and I am so grateful for them.  There are people on my son's "team" of professionals who go way above and beyond to support him, and our family.  I am so grateful for them as well.


This journey began over seven years ago, and is nowhere near its end.  I have struggled, waited, worried and stressed over the situation.  I have been very broken.  I have questioned myself, the mental health profession, and God.  Hearing that the problem is likely "biological" certainly doesn't ease the burden, on my son, or our family.  When I look at my other children, and have another son exhibiting the same behaviors at the same age, I fret, and worry, and pray.  Can I do this again?  How do I do this?


Sometimes, things are too difficult.  I wake up, and realize I don't want to get out of bed for what the day might bring.  But, then, I think of the Horn of Africa, and our adopted son in Ethiopia, and know, however difficult things are here at the moment, we are blessed beyond measure.  It is so easy to give into pity for one's self, but contributing to work for the hardships of others can be a path to balance.  It's okay to feel sad, and angry, and even depressed.  But, move through it, don't avoid it, let yourself grieve and feel pain when it comes, and then re-focus and move forward.


I won't give up.  I have been entrusted with precious gifts of children, and they will have all my will and effort.