Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our five-year-old son, who also has some special needs. My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. )

Lost Edens by Jamie Patterson is the true story of a woman who decides to take her husband back after he admits to having an affair.  She does this without the support of any of her family or friends, there is not one person behind her, but Jamie is determined to make it work.  Throughout the book there is evidence of her husband having some serious mental illnesses.  And that’s all I am going to say because I don’t want to ruin how this amazing book turns out.

I am married to someone with severe mental illness, so severe that he receives disability as he is no longer able to work.  If you don’t know much about the Social Security Disability process, you pretty much need to be near death or severely mentally ill to be able to get disability on a first time application.  My husband was a “yes”, on his first try.

Grant has had mental illness since he was a teenager.  He spent his teenage years (in the mid ’80s) suffering until he was diagnosed with bipolar disorder.  In college he drank and abused prescription drugs and marijuana in an effort to self-medicate.  He got the most help when the ground-breaking drug Prozac and others that would follow became available to the mentally ill population.

When we met he was pretty well balanced, mental health wise.  The drugs were working for him.  Ours was a long distance relationship for a year when we decided that he would move to New Jersey from Ohio and move in with me.  I was 31 and I knew this was something special.  Grant was loving, generous, sensitive.  I had never met another man like him and I felt truly loved and respected.

We married in 2002.  Grant had a good job working for an insurance company that was free or at low cost for poor families. Unfortunately he happened to have the boss from Hell, and it wasn’t just him who thought so.  Part of what I loved about him was his sensitivity but it did not serve him well when it came to this woman.  Eventually, despite asking for an accommodation, they were not able to work things out and it was a mutual decision that Grant leave his job.

In his next job he worked as a Consumer Advocate, helping parents of disabled children get the services they deserved in the public school system.  Grant has never had a job that did not benefit mankind, something I really admired and envied, as while I liked my job, I often felt unfulfilled.  What was I doing to benefit humanity?

Unfortunately, after a couple of years, Grant began having difficulty there too.  He had trouble getting out of bed to face the day.  He had trouble getting through the day, and due to his OCD he was unable to keep up with the huge amounts of paperwork that the job required.  He had never asked for an accommodation and was fired in May of 2007.  He has not worked since.

When our son was born in 2006…I don’t want to blame him because Grant and I don’t regret having Tyler for one second.  Having a child, being a first time parent is hard for anyone, but for Grant it was like difficult times ten and throughout Tyler’s life I have been watching Grant sink deeper and deeper into his illnesses.

Grant is now to the point where he spends a good deal of the day just sleeping, having to medicate himself (under doctors’ watchful eyes) because life is sometimes too painful. The stress of me being chronically ill and collecting diagnoses along with our son having Tourette’s Syndrome, OCD, Anxiety and probably more doesn’t help.  Again, any husband or father would struggle having a sick wife and a child with emotional problems but for Grant it is times ten.

It’s no surprise that Grant’s mental illness has put a strain on our marriage.  Sometimes his mental illnesses make him say things that he doesn’t mean.  He will come up to me and say, “I want a divorce” or “I can’t do this any more, I need to leave, I need to go away”, only within the hour to come back to me and say he didn’t mean it and he loves me and is sorry.

It has been hard on me but I have learned to harden my heart and, as difficult as it sounds, take these kinds of things he says with a grain of salt.  Of course these conversations are not without damage to me, I would have to be soulless to say they aren’t.

I once called his therapist, crying because I couldn’t take it any more, I just couldn’t keep going on this roller coaster!  His therapist told me, “Emily, Grant adores you!  He loves you and does not want to leave you and Tyler. It is just his mental illness talking, he does not mean it!”

But as I said, these conversations do do damage to my heart and soul.

So, why do I stay? 

Because Grant is doing the very best he can.  He takes his meds, he sees his psychiatrist, he sees his therapist. He doesn’t stop trying every day.

I stay because of the love and support he has given me.  Me, with my over a dozen diagnoses and counting.  I cannot tell you how many men leave their wives when they become chronically ill, how many men cheat on their sick wives.  Grant is my biggest cheerleader.  He is my best friend.

I stay because, although he is not a perfect one, he IS a good father and tries every day to keep being a better one.  He cares almost too much about Tyler and agonizes over trying to do right by his son.  Meanwhile, Tyler thinks that Grant is the best daddy, the funniest daddy in the whole world.  Tyler doesn’t care that Grant is mentally ill, he still thinks his daddy hung the moon.

I stay because I took marriage vows.  For better or for worse, for richer or poorer, in sickness and in health.

And the number one reason why I stay?

Because no matter how the mental illnesses are destroying him, Grant is still the most loving, generous and sensitive person I have ever met.  

That person I fell in love with is STILL there.

The post Why I Stay first appeared on Mama Sick.

“We meet with the school on Wednesday”, he told me.  I was in shock and I said, “For what?” “To see how we can help Tyler.”

I felt angry at the teacher.  We had been having problems with Tyler at home, mostly with anger, but when I met face to face with her two weeks ago on Back to School Night, she assured me that Tyler was doing well in school!  We had been so relieved.  To everyone who would ask I would say, “Knock on wood and thank God, there has been no trouble at school.”  We were thanking whatever lucky stars we had that Tyler seemed to be able to handle a “normal” education.  Just yesterday I had made an appointment with a child psychologist.

I told her, “Tyler is an angel about 90% of the time, the other 10% is a big problem.”

And now I feel like a walking zombie knowing that what I told her yesterday was not the truth.

I know my anger is misguided but I want to yell at the teacher, “How did you look at me two weeks ago and tell me there were no problems with my child?  Why did you let me think that??”

I realize that this teacher is one who has been teaching kindergarten for over 35 years and that her approach was to try to diffuse the situation herself, and her calling us yesterday was her saying “I cannot do this alone.”  But I can’t help feeling angry!  She let us think there were NO PROBLEMS at school with Tyler!  She allowed us to breathe false sighs of relief, to live in a state of ignorance!

Gross and fine motor skills??  Yes, I knew that Tyler was behind but I have been seeing improvements that she could never see, not knowing him for that long.  I see the way his writing has improved and how his artwork is getting better.  I watch him use the grownup scissors when we do his homework and am amazed at how well he cuts with them!  For godsakes, this is just kindergarten, and he has only turned five a month ago, just how advanced is he supposed to be??

Doesn’t she know how smart Tyler is?  All I have ever heard from teachers and ordinary people was that Tyler was an extremely smart child, a special person.  How funny he is? How empathic?  How strangers’ mouths drop open or how they laugh when they hear my son speak?

Where is that boy in all of this???

Grant and I had no time to grieve.  It was time to go to the bus stop.  We both want to shut down, or at the very least, call our friends and family, but we are up against a three day weekend and how are we going to talk about Tyler when he will be with us all weekend long?

I feel so thankful that I have this blog, this outlet for me.  Where I can get it out and let the tears fall as I write these words.

Last night we questioned Tyler about the explosive noises.  We gave him very little explanation and he knew exactly what we were talking about.  We stressed that we were not mad at him, for him to just tell us the truth.  “Tyler”, Grant asked, “Can you stop doing those things at school or do you feel you have to do them?”  “I can’t stop it.  I have to do it, daddy.”

Maybe this is strange but I felt a bit of relief at that statement.  Tyler is not being “bad”.  It is either a tic or his OCD.  We can help him, this is not a new diagnosis, he is not a “bad kid”.

A large part of me wants to scream at God Why?? Isn’t it enough that Grant and I are disabled? Why did you have to saddle my child with a whole other set of disabilities that for the most part are very different from our own?  How are we supposed to deal with this when we are already so taxed with our own sicknesses and the poverty and stress that come with them? How can you throw this at us too?

One thing we do have going for us is that Grant used to be a Consumer Advocate for children with disabilities, and we have that knowledge going into this meeting what the school is obligated to do for us.

Until then, and especially this weekend, I need to put this news behind me and concentrate as always on giving Tyler the unconditional love he needs and making my head rule my body as I must keep on going, keep on doing the normal weekend stuff and going forward with the plans we had this weekend, like going to our local farm’s annual Fall Festival.

There is nothing I can do this weekend, nothing I can do until Wednesday, except to continue to strive to give Tyler the childhood and life he so very much deserves, as much as my disabilities or money will allow.

And this weekend, keeping it all together is the most important thing I have to do…for my son.

The post The School Called first appeared on Mama Sick.