Moving Forward

The beginning of 2012 has been interesting.  Since January, my oldest has been in a therapeutic day school.  It is somewhat successful, but home is still very difficult.  I appreciate very much the people caring for him at the day school because for Ryan to be as successful as he is there, is quite remarkable.  I am happy that he is finally beginning to see some bits of happiness for himself, I hope that it continues to grow.

I just received my seven year old son's neuropsych testing back.  It is the same story, same progression as my oldest.  I am always trying to keep in the forefront of my mind that, "There is a reason."  I may not know what that reason is, but, hopefully, I can gather strength and forge ahead.  Life is DIFFICULT.

I am proud of the many strides I have seen my daughter make with accepting her brothers' illnesses.  I am thankful that they can begin to appreciate that she is truly an angel in their life.

When things get hard, I am always trying to remain faithful.  I look at the steps I have made in understanding and practice, to help my children cope, grow and be comforted.  I struggle, every day.  But, every day, I come back for more.  That is life; Fall down, get back up.  I am grateful that God helps me get up every day.

Sometimes, the blessings are the simple things, and they are enough.  They have to be.

Ending the Year

I'd like to say that I will look back on this year with fond memories, but I really can't say it.  However, I believe this year has produced the most growth for me in all of my years to date.  I credit this fully to handing my life to God in 2010...and I mean handing EVERYTHING.  I have always tried to defer to God, but in 2010 I said I was willing to give it ALL, and what a ride it's been.

There is a song, sung by the most excellent Lindsay McCaul, called "Take My Hand."  When I first heard it, live in concert, I could barely breathe for my sobbing.  I felt as though all of my thoughts and feelings were pouring out of her powerful song to us.  I definitely had a moment of bravery, and I definitely wasn't ready for what has occurred.  SO many things have changed, my life barely resembles what it was before 2010.  There have been times I have been absolutely TERRIFIED, and crying out, "Why is this happening?"  Always, God gently whispers, "It will be okay."  A lot of days, I'm still not sure.  But I'm willing to stay the course.

I want to extend heartfelt thanks to all of the people who have so willingly shared their difficult journeys with a larger audience in the name of hope.  Or, at the very least, letting others know they are not alone.  Special thanks to Lori Schilling, Randye Kaye, Kay Redfield Jamison, Jay Neugeboren and Ken Steele.  You have helped me so much.  Thanks also goes to the people at NAMI DuPage, for volunteering, showing up, and listening.  It has been really comforting to have you all.

Sometimes we realize things about ourselves that we don't want to know.  I have learned a lot more about my weaknesses this year.  I have a lot of work left to do.  I have to remember all the time, constantly remind myself, "Soften your heart."  It is easy to get angry, overwhelmed, frustrated, sad and desperate.  Those are the times I have to recite the mantra to myself, "It's not about me."  I think one of the key things to do in a situation you are totally unfamiliar with is to first put yourself in the other persons shoes.  What might they be thinking?  How might they be hurting?  How can I help this end as positively as possible?  Not easy work, but it is helpful.

I have also learned something about my strengths, and that knowledge is somewhat comforting.

My oldest is still in transition, and things may not get better.  Then again, maybe they will.  All I know now is that I must meet him where he is and try to deal as best I can.  There is still so much judgement from some other people.  It is discouraging, but then I remember, "Yes!  This is why I have loosened the tie."  I can't change others, so I need to change myself.

To Dr. Henry Cloud, you have done wonderful things for me this year through your writing, so thank you.

There are some special people that have tried their utmost to walk with me through this.  I want to thank, very sincerely, Colleen, Tom and Lisa, Ruth and Shelly.  I love you all.

Though I can't say I'm sorry to see this year end, I am trying to remain positive about the future, after all, God's got it covered. :)

Lessons

I thought about it today, when I read my last post.  I tend to write at my most down moments.  But, while it is therapeutic, I also want to make sure I include some bright moments, and things that I am truly grateful for.

I am continually humbled by the people appearing as "angels in disguise."  I have had some real, true blessed experiences.  I have a renewed friendship that I have missed.  I have some people extending me grace from afar, and people praying for us.  God is good.

While it might not seem like a benefit, because no one wants to have a mental illness, I thank God for the support  that my son is getting in certain places, ones not even he expected.

I am continually getting the opportunity to look at things in a new light, and I might not have had this experience otherwise.  I feel like I am able to really live in brokenness, and it is making me even more grateful for what we have.

I struggle, daily.  But, there is hope.  It may not look like I thought it would, and I know there will be plenty more really rough days, but for now, I wanted to express my gratitude.  I am grateful for the lessons I am learning, because I might not learn them otherwise.  I do believe this journey is making me a better person for all of the trials.  I wish that I could help my son, though, to understand that I would take away his torment and pain, if I could.  That is a lesson he will take a long time to learn, but I hope he does learn it.

Who's there?

It's really hard for me to believe it's almost Christmas.  Time here has flown by, and sometimes I feel like I live the same week over and over.  


This journey has become more difficult because although I am taking responsibility for the life of another person, my son, I cannot get inside his head, know his thoughts.  I am chipping away at a wall that has been built over several years, and I didn't even know how bad things were.  Many of the things I let myself believe because of the advice of those around me (including doctors, therapists, psychologists, psychiatrists, friends, family) were just WRONG.  I have always had an issue with self-doubt, and over the years I had believed it was getting better.  It didn't get better in time for my son.  If I had trusted my gut, I believe we both would have been better off, sooner.  But, I also have to remind myself daily that God has a plan, and I don't know best.  


Advocating is a full time job.  It is taking every last ounce of my energy.  I spoke with a state advocacy agency about helping me advocate, and the director told me I should work for him.  It was a great compliment, and I appreciated it, and it is a job I would normally volunteer for, because I believe in this so much.  Yet, I thought, I can't even manage a shower, so obviously, this is taking an inordinate amount of my time.  


My seven year old said to me today, "Mom, you missed the races at school before Halloween, and you missed the Christmas party today."  I almost cried.  I can't be everywhere I want to be, or even need to be some days.  I am at the hospital two to three times a day, every weekday. I have to get one child on and off the bus, and two others homeschooled.  I have to take care of bills, cleaning, laundry, business items, shopping, etc., etc.  It is absolutely overwhelming.  I can't be enough for everyone, not even me some days.


The school is telling me they really have my son's best interests at heart, and I want to believe them, but I don't.  I mean, I know they think they do, but in the end, everything comes down to money, precedent setting and lawyers.  Heck, even my interests are skewed sometimes because I am so overwhelmed, how could theirs not be?


I am going to go touring day schools and residential facilities in the next month, something I NEVER thought I'd do.  I am reading and absorbing again, The Quiet Room by Lori Schiller, and using it to eek out little thoughts from my son about his experiences.  Seemingly, a lot is very similar.  It makes me afraid for him.


My seven year old is now visually hallucinating, confirmed.  My oldest tells me the voices preceded that for him.  I am trying to intervene NOW, heavily, to see if my seven year old can learn about how to deal with things beyond his control.  This has been a ride like one I've never had.  God bless my children.


Who's there?  Not a question you want to have to ask your seven year old.  Hopefully, there will be grace and mercy for him, too.


Thanks to all the people I have come across who have made this journey just a little bit easier by their kindness and caring.  I am thanking God for you all.

Muddling Through

My son has been re-hospitalized, and my 7 year old just spent two weeks in partial hospitalization.  My daughter is depressed, and I'm concerned that it is becoming serious.  My five (almost six) year old is having tantrums and crying fits he never had before.  My husband and I are disconnected and overwhelmed.  I don't know what to do next.


I never thought I could feel this depressed ON medication.  I struggle with Major Depression, but that is why I take medication.  I can't even IMAGINE what things would be like if I wasn't on meds at this point.  My panic attacks are happening more frequently, and I feel so lost.


It is very difficult for so many things to be out of control.  When I told God I would give Him over total control, I didn't expect quite this ride.  I am still not sorry I did it, but I am feeling like I am drowning.  I had the privilege of  being able to see the Casting Crowns concert, which of course, was amazing, but a new artist, Lindsay McCaul, performed a song that left me sobbing.  It is called, "Take My Hand" and I feel like it was written about me.  I guess that's the great thing about songs, they can really show you that other people share deep struggles right along with you, same or not.


I want to sleep, I want to huddle up, stay home, and do nothing for days.  My "manager" as my friend calls the same part of her, is still in working order and won't let me do it, and I'm grateful.  There is this pit that I'm just inches from that I feel I could fall in at any time.  There are times I am scared it could really happen.


I can almost understand why it is so much easier for my son to deal with hospitalization.  Things are very simple there, and they don't require a whole lot of him.  At home, it is a different story.  We had a visit the other day, and he told me that when he gets off the elevator and sees us waiting to visit, it is like a dark cloud descends on him, one of anger and agitation.  That was hard to hear, but I know it's true....I've seen that dark cloud since he was 7.  He would never verbalize anything like this before now, and I wonder if the medication is allowing him to explain a little more of what is going on inside.


For now, life is about therapy sessions three times a week, visiting, staffings, and juggling everything else along with it.  I think that's why they call it "muddling through."  There are no clear cut boundaries to all the things that have to get done.  They all have to get done, sometimes at the same time, and you just have to do it, make it work somehow.


I am reminded daily to "Praise You In This Storm," and I'm trying, I really am.

Painful journey

This is a very painful journey.  I am not saying that for myself, although it is true as well.  Watching a mentally ill child try and make sense of what is happening to them is truly difficult.  It is also extremely painful to watch your healthy children deteriorate before your eyes because of all they have gone through, and not know how to help.  It is painful to realize you yourself have been the cause of too much of this pain, because you have tried to handle things yourself instead of "letting go."  


Recently, I bought myself a print to hang on my wall.  It shows a winter scene with a barren tree along a fence, and says, simply, "Be still, and know that I am God."  I bought it because it is a reminder to me that I need to "let go."  I can trust God, especially when things are immensely difficult.  The winter scene reminds me of how we are barren, and come spring, the tree will bloom beautifully again.  It is a season of difficulty, not a lifelong state.  


I am able to cling to God during this time.  I have been able to do so since I was a little girl.  Of course, there were plenty of times that I strayed from God, and others that I thought I knew better, but in the end, I know I can trust God.  I am having a hard time convincing my children that they can trust Him, too.  My son, unable to cope with how he feels, is angry, sad, scared and frustrated.  The last thing he wants to do is believe that there is a plan for him.  I try to gently remind him that God has a plan for each of us, because God is in us.


I don't know what these coming days will bring.  My son is being released from the hospital after 43 days, and he isn't better.  He has the same issues that brought him there, and has not made much progress.  The doctors feel that they will be able to get through to him better in a partial hospitalization, because he only wants to talk about going home.  This is not setting well with most of us here.  Those in denial are happy he is coming home, the rest of us are uneasy.  So many long years of chaos, stress, unsafe behavior, torment and threatening have left me empty.  I don't have much strength to muster to have him returning already, but I also don't have a choice.


I can definitely empathize with the many families that have traveled this road before me.  Even as terrible as the state of mental health care is today, surely it was much worse before.  The feeling of being alone is an enormous burden it itself, and all the other challenges are next to impossible to effectively deal with.


I am heavily in prayer today that as unaware as I am of what the "plan" is for my family, that God will hold us through it.  Being "still" isn't easy.

Looking Up

There is not a day that goes by anymore that I do not think about how we got to this place.  I mean, this place of uncertainty, fear and feeling a bit hopeless.  I am always judging myself, and always trying to be "better".  Years and years ago when I knew something wasn't right, but no one was listening to me, and they all believed that I was reading too much into things, I judged myself.  I thought I was fatalistic and a bad parent.  I did press on, though, and the part of me that would not let "it" go, kept me reading and reading.  I probably read 150 books over the course of two years, trying to figure out what was wrong.


As a homeschooler, I got to be around my son all the time.  This, of course, had good and bad parts to it.  As I read about kids with mood disorders (whatever the kind) that grow up in a family of "high expressed" emotion, it isn't positive for them.  Yet, knowing my son as well as I do, helped me to really look in depth and find what might be wrong.  I have learned that "gut instinct", "intuition", "discernment", whatever you want to call it, is the key to success in any endeavour.  Even amidst the conflicting advice, I persevered in the way that I knew how, and I feel that I did not let my son down in this way.  If he had not had a neuropsychological evaluation at age 10, we would have nothing to compare to now, to see how far he has deteriorated, and it might have taken longer to get on the right track.  I say this, not to be boastful (certainly nothing to boast about), but to remind everyone that it is possible that a mother, who spends all of her time with her child,  might know better than doctors, friends, peers, specialists and therapists.


When one thing doesn't work, try another, and another, and another.  There are times when answers are not forthcoming.  Keep trying.  Don't give up.  We are the only advocates our children have at these ages.  It is difficult.  Heartbreaking.  Chaotic.  I would encourage every parent who has other children along with a mentally ill child, to create boundaries.  Do so for yourself, your other children, and for the ill child.  It will save a lot of grief and your sanity.


One thing a therapist friend of mine mentioned to me, differently than I had thought of it, was that my son has now been in the hospital for 37 days.  He is also on a "last resort" medication in Clozaril.  I have been dealing with all of this, at home, previously.  Now you know why I say to create boundaries. You probably can't, unless you have experience with having a mentally ill family member, imagine the devastation left behind.


I labeled this post: Looking Up.  I am doing a lot of that these days.  I am looking up toward God to guide me in my decision making and to help me to persevere in the midst of this crisis.    It's funny (not really) that therapists keep calling this a "crisis".  One thing that gets really skewed is tolerance and expectations.  I was, what Dr. Henry Cloud calls, "Acclimated to the misery."  Yes, I expected every day to be difficult, and it was.  I wasn't taking responsibility in the way I should have, to say, "This is more than I can handle."  I have always feared being seen as a parent who is lacking.  I wanted my kids to know that I was there and always available to them.  I made a mistake.  By not setting necessary boundaries in our household because of being overwhelmed, exhausted, and hopeless, I created a very unsafe and miserable environment.  I relied on my own desire to "do it all," and now, the other children are paying the price for that decision.  I'm not feeling sorry for myself, I'm just taking responsibility.  I am also committed to not letting it happen again.


It's hard to know the right things to do.  There are indications that my son's type of illness, and the way he presents may suggest a very poor outcome.  What I have to do now, is face the reality that things might not get any better than they are now.  I have to be realistic, and take in the evidence and what is being said.  But I can also pray.  I can pray that whatever happens, my son will be held through all of this, and we will be too.  I also have something else that I am striving for.  No matter how bad the circumstances, I need to keep looking up.