Shoulda, woulda, coulda

If you are going to share one of my posts, I hope that this is the one you will share.  This is the one that describes my rawest emotions as I deal with the Matthew I am raising now, rather than the Matthew I had as a baby.  This is the one that will help you to best understand how the hell of bipolar and developmental disabilities impacts not  just me, but Matthew himself, and our family at large.  This is the post that hopefully will help make it real, that will make it "not just something that affects someone else", but rather something that could just as easily touch you too."

We are all just one step away from a problem that we didn't expect to deal with.  It could be cancer, it could be mental illness, it could be a death in the family, it could be anything, but each of these issues are crushing and each of them impacts you at the core of your being.

The difference is, when it is cancer, people set up a support system.  They bring meals, they offer child care,  they understand that the parent is torn between caring for their child who is ill and their children who are at home.  It isn't perfect, because when a family is touched with any illness or death, people are afraid, but I think that there is a prescribed response, and an expectation, that the family is busy in and out of the hospital caring for the sick person.

When it is death, there is a recipe for how to help the grieving family grieve, at least in the short term.

When it is mental illness, the expectation is that the family will just keep going.  My son has not been home for 2 weeks, and I have heard from very few people.  I dropped him off at a respite placement, because he was unsafe at home, and I went to work.  And I have been at work each and every single day.  And I have been happy, and and I have kept plugging along, because that is what you do if your son has a mental illness, because it is "the unspoken", it is the thing that people don't want to touch.  It is the thing we keep at a distance for fear it will impact us as well.

For me though, it happened.  It happened to MY baby.  It happened to the boy I bounced around on my knee, to the one that I love with all my heart and soul.  It happened to the boy who sings and dances.  It happened to the boy who makes people laugh.  It happened.  And it is dark, and scary, and disasterous, and it is something I have to deal with, and worry about, and fear.  But it is our life, and we will get through it.

I understand keeping us a little at a distance because mental illness "looks weird", it is "that thing we see in the movies", or that thing "Uncle George has", but it is not going away.  Matthew was fine one minute and then he was not.  He was laughing an odd laugh.  He was up in the middle of the night.  He was angry over nothing and aggressive.  He is cycling the cycle of bipolar.  Right now I am talking to him on the phone each day and some days he is too tired to even talk, and other days he is so flat it is not really him and then other days his speech is so fast it is uncomfortable to even be on the phone with him because I can feel his heart racing through the phone.

It is bipolar.  It is ugly.  It is not going away.  He is getting bigger.
                                             I cannot predict our future.  It is not going away.
                                                           It is scary for me.  It is scary for him.  It is scary for his brothers
                                                                          It is bipolar.

The hardest part right now is that I have learned that once he is 13 there is no respite like Healy House.  I will have no options when he cycles.  He will stay at home or go to the psychiatric hospital.  The problem is that in the hospital all they do is change medications and they change them quickly.  The insurance companies insist that they make change each day with the goal being to get the patient home quickly.  Medications take time to work.  Medications cannot be changed quickly.  What will I do in 6 months when we are not safe?

The one thing I know about my son is that he would never, ever, ever hurt someone if he was in control.  EVER!  He has the heart of a champion.  That said,  mental health issues combined with his developmental disabilities he got hit with the double whammy from hell.  He has no control, and he especially has no control when he is upset.  And when he  is in a bipolar cycle, his mood goes up and down in hours, not days.  He can be up and fast, and then down and angry and then flat and sad.  He is not in control of this.  That is the one thing I know for certain.

My son is an amazing drummer.  Had he not been hit with this double whammy he would have been the star at the school concerts-----the star.  He is incredible.  Instead, he is at a school that has no band, no music program.

My son has a memory for details that would amaze you.  Unfortunately, it is not details that matter in school.  He can tell you where we were and how to get somewhere even if he only went once 10 years ago.  He can remember your name, and details about  your family.  But he can't remember basic math facts. He could have been one hell of a class president, but he wont be because of his mental health challenges.

He is strong, and loves to play sports.  He would have been one heck of a baseball player.  But his brain doesn't understand the game.  He plays now because his coaches have been awesome, but there are limits.  He doesn't understand who to throw the ball to.  He asks too many questions.  He could have been a great player and a well liked player, but his limits get in the way.  For now he is tolerated, my hope is that this will continue.

All I can ask of you is that you embrace families who struggle with mental health or developmental challenges.  They will tell you they are fine.  What else are they going to say?  They will give you the quick update.  The real update is too scary.

Mental health issues are like any other health issues.  Except you can't see them, they are the invisible struggle.  It is easy to blame them on parenting.  It is easy to assume that "you could do it better".  If it was fixable, I promise I would fix it.  If I could do it differently, I would.

I adopted Matthew with my heart ready to love a baby boy.  He was the reason I adopted David and Jacob, he wanted brothers.  When I look back to his baby years, before our world collapsed when he was 3 and I realized how significant his delays were, my hopes for him were so high!  My god, he was the mayor....he made the world laugh!  Even through first grade he was a riot!  He was Matthew!  He was an awesome kid.

He still is an awesome kid, but his struggles are intense, and his roller coaster has huge ups and downs.  We are riding the ride, it is the ride I got a ticket for.  And we will ride it well, but please remember, at any time, you too may get the ticket for this roller coaster ride, and you would want to have someone to tell you it will be ok.  To remind you that there is a safety net in case you fall.  To remind you that it is not your fault.

You may need all of these things, even without asking.  And sometimes, you may need more and sometimes you may need less.  This is the ride with no line, no one is waiting to get on this ride.  You weren't waiting either, but it is the ride I got a ticket for, and it is the ride I am on.

My son has bipolar.  My son, my baby.  The one I had hopes and dreams for.  The one who could have been a rock star, or class president.  My boy!

(In reading this you may think that I am depressed or angry or some other extreme emotion.  My emotions are on a roller coaster ride along with Matthew's.  Today is a good day.  It is a snow day and I am getting a wonderful opportunity to just enjoy some time with David and Jacob.  We are alternating between enjoying the quiet and enjoying each other's company.

 I am ok.  I am strong, and I am knowledgeable and I am up to the challenge of being Matthew's mom.  That said, at night, as I try to balance talking to Matthew on the phone and adjusting to where he is emotionally, and feeding the other boys dinner, and tucking them into bed and walking past Matthew's empty room, of course it is hard.  As I worry that I am not there to monitor Matthew as he starts a new medication of course it is hard.  It is hard to deal with invisible issues.  If I can help one person to understand that and if they help one family who struggles, then I consider that a success.

Mental health issues are scary, they are intense, and they are invisible.  Families cope because there is no choice.  I am ok, my other boys are ok, and Matthew is in a safe place.  Life will be harder in 9 days when he comes home and there is no safety net.  My hope is that the bipolar cycle will have settled and the meds will work.  That is what I can hope for, until he comes home.)