Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.


Endings and Beginnings

2014 is coming to a close, and I am so glad.  This has been one helluva year.  I’m having yet another brain MRI today–the day after Christmas.  The year has to go out with a bang, I guess.  Well, I say, let it! So long as 2015 is inaugurated with celebration.  We made it through 2014, and we’re better for it.

My girls and I spent an afternoon with one of my favorite friends the day before Christmas Eve.  Our two families have had a tradition for a decade now.  We get together and make gingerbread houses.  When we began this tradition, our children were young, and it was really just the two of us frosting and decorating the cookie cottages while attempting to keep the little hands from stealing all the candies.  Odd traditions began.  My friend would unfailingly put the roof on her house upside down.  Every year! She would yell out in frustration, “How could I do this again?!” This year, however, we reminisced about all those imperfections and repeated errors.  It has become mandatory that she put her roof on upside down.  It’s part of the charm.  Our kids, however, took over all the decorating this time.  Eadaoin is sixteen this year.  My friend’s daughter is eleven.  The kids no longer needed our help or advice.

We were able to relax in her living room with our warm beverages and chat while our kids decorated the gingerbread houses completely on their own–even Grace.  What a strange feeling.  She asked how I was doing.  Being a close girlfriend, she went for the jugular: “How’s the marriage?”

Isn’t it funny how girlfriends waste no time? We simply ask.  There is no chit-chat.  My answer? Everyone who reads my blog knows that this year has been grueling.  “Better.”  2013 ended on a precarious note where my marriage was concerned.  2014 will end on a better note.  Perhaps in a major key.

So, what happened? I’ll be as honest as I can be in hopes that it might help someone else should they find themselves in a similar spot.  The day I began writing this blog, the clinicians treating Grace–and there were many–believed that she was bipolar.  Within a month of that diagnosis she declined rapidly and was then diagnosed with a schizophrenia spectrum disorder.  She was not yet 11 years-old.  Her overall decline from healthy child to psychotic happened in less than a year.  It changed our entire family life.  Eadaoin is in therapy today, in part, due to witnessing Grace’s psychosis onset.  Doireann is a completely different young woman today because of Grace’s disease.  We are all different now.  Severe mental illness in a family affects everyone, and everyone behaves differently in terms of coping strategies.

Ordeal has a way of distilling personalities and bringing forth cracks within character and the relationships therein.  I am inherently tenacious.  This is both a blessing and a curse.  I do not give up.  I will hone in on a problem and attempt to fix it until it is no longer a problem or until I have died.  This approach to life worked well where Grace was concerned.  This approach to life worked well in almost all former circumstances.  It does not work well within a marriage when the problem is perceived to be a person.

My husband is as avoidant as I am tenacious.  This is his primary character flaw.  We are both exceedingly stubborn in our positions.  The more I pushed him to deal with those things that increased his anxiety, the more inert he became.  This only increased my drive to “solve him”.  What I did not understand was that he was coping with watching his daughter fall apart by using avoidance–his primary coping strategy.  Avoidance behavior is one of the go-to coping strategies used by those with anxiety disorders.  I do know this, but I couldn’t grasp it at the time.  How does one avoid one’s entire family? Why? One does this because one really lacks the capacity to deal with what is happening.

I observed this and insisted that he see a doctor in order to start anti-anxiety medication.  After almost 17 years of living with his anxiety disorder, I needed him to get his head in the game.  I needed my partner, my friend! I couldn’t do all this alone.  So, I issued him an ultimatum.  How awesome.  Ultimatums are never great, but he did see his internist for a physical.  It was then that he casually mentioned his anxiety.  He was given the standard anxiety check list; he passed it with flying colors.  He left with a prescription for Zoloft.  That’s it.

I must pause and say this.  If a person sees a psychiatrist, then one goes back to the psychiatrist every four weeks after beginning a new medication to discuss how one feels after beginning the drug.  The drug is tweaked or even discontinued in favor of a better or different one.  Internists should not manage psychiatric conditions.  This is where we went wrong, and this is also where I knew we were going wrong.  Recall what I said about my husband’s inertia.  Inertia was settling in at this point.

My husband had never taken a medication for his anxiety.  He had self-medicated with alcohol.  He stopped using alcohol at this point in favor of Zoloft.

A word about Zoloft: Zoloft is an SSRI.  On the spectrum of SSRIs, it is the most emotionally blunting while Prozac is the most activating.  Zoloft is also not a well-known anti-anxiety drug.  It does have some effectiveness for social anxiety, but it is not effective for generalized anxiety disorder (GAD).  Lexapro, on the other hand, is in the middle of the SSRI spectrum as far as emotional blunting and activation.  It is also known to treat depressive symptoms as well as anxiety without some of the better known side effects like suicidal and self-harming ideation for which Zoloft is known.

My husband, however, had never known life without his crippling anxiety, and Zoloft’s emotional blunting was just what he was looking for.  That dead feeling inside that the drug provided helped him cope with his own life as a father, provider, husband, and man.  He liked it.  He liked it a lot.  Perhaps he even needed it.  I, on the other hand, despised it.  He went from an anxious but likable man to a vacant, emotional corpse of a human being.  It seemed that there was no middle ground.  It was one extreme or another.

He disappeared from our entire life, but, in his mind, he was present.  He wasn’t.  He was like a wraith.  We stopped having sex.  For two years.  He had no desire.  In fact, he had no desire for anything.  He described it as feeling paralyzed under a heavy blanket, but he sort of liked it.  He just wanted to do nothing.  He wanted to lie in bed all the time or sit in his room.  He slept all the time.  A ridiculous amount of time.  He, however, was not anxious.  I don’t think he felt anything, and that’s the point of Zoloft.  Imagine a person who feels too much or a person who is completely overwhelmed to the point of being almost non-functional.  Zoloft would be very helpful because it would provide a much needed emotional balance.  Or, perhaps not feeling very much for a time would be helpful in order to learn to think rather than feel all the time.  A drug like Zoloft can be very helpful given the right brain and circumstances.  It was, however, not the right drug for my husband.

After living with him for almost two years on this drug, I truly began to believe that perhaps I was worthless and unlovable.  He did almost completely ignore me almost all the time.  There was, however, much to be learned here.  At some point in the middle of this, I realized that, as a woman, I gleaned a great deal of self-worth from the success of my relationships.  This is a rather female point of view.  I gave up a career to stay home and raise my daughters after all.  It’s not as if I have a career to fall back on at this point.  In my mind, what does it say about me if, after all this time, I come out of this with a shitty marriage and mentally ill children? I thought I had to be Martha Stewart for Pete’s sake!

What now? What if he really didn’t love me anymore? I had to get a life.  That was the loudest message that I heard throughout 2014.  Build a life.  I saw it everywhere.  A stranger in a restaurant even came up to me and told me that very thing if you can believe it–“Don’t wait for your husband to figure out what he wants.  Go out there and do what makes you happy.  Build a life for yourself.”  What an empowering message.  So, I stopped looking at him and what he was doing.  I started looking at me.  I aimed that tenacity at myself and left him alone.  I let him sit alone in our bedroom for months on end.  I let him sleep the days away.  I started making weekend plans with the girls.  I started…living.  It was hard because I felt like I was leaving something behind.  Something symbolic.  I realized, however, that we must always be bringing something vital into our relationships.  We must always be building our own happiness and internal resources as individuals if we are to attempt to build something worthwhile with another person.  Grace’s illness tapped me out, and I became so focused on her and my other daughters.  I forgot that I was a separate person, too.

So, what happened? He felt my emotional departure.  I didn’t abandon him.  I simply left him alone, and that changed the dynamic in our relationship.  He started asking to join me on our outings.  He was still emotionally comatose, and I was still seething with resentment; but, something was thawing.  Two months ago, he finally saw a psychiatrist, and she switched him from Zoloft to Lexapro.  He recently told me that he had no idea just how dead he felt on the inside on Zoloft until he didn’t feel that way anymore.  He then said, “I should have never been on that medication.”

Yes, I wanted to punch him.  The past two years have gutted me.  Our marriage has suffered in ways that I never thought it would, but perhaps it needed gutting.  There was never going to be an easy way through this leg of the journey with Grace.  It was always going to be horrendous.  We did what we had to do.  I, however, wonder if my health would be better today had he not abandoned ship as he did.

So, what’s the takeaway? I suppose that it’s this: Even if everyone else abandons you, don’t abandon yourself.  There will be crises in life.  Once those crises settle, come back to yourself.  In the end, no one is going to take better care of you than you.  Man or woman, we must always invest in our own development and healing.  That says that we are worthwhile and lovable.  We can’t expect others to love us if we don’t love ourselves.  It is, therefore, crucial that you find those expressions of self-love that are meaningful to you and claim them.  Make them a part of your life in a consistent way.  In this way, you will learn to weather the storms in life be they circumstantial, relational, or existential.  And practice the art of forgiveness.  This has been my greatest challenge and lifesaver.  Learning to move forward without giving up self-respect and, at the same time, granting pardon.  This is the grittiness of life. This is the hard stuff.  Knowing that pain and love often weave themselves together as we grow, and one doesn’t cancel out the other.  They often coexist.  Forgiveness doesn’t ease the pain, and pain doesn’t minimize love.

This is what I’ve learned in 2014.  It’s been a very painful year, but, as I said, I’m better for it.

I hope that as 2014 ends you are able to see where your paths have taken you, find a new horizon line, and begin the next leg of your journey with hope.


Interesting Times

This is in no way a helpful post.  This is a, “I’ve been in the house for a month, and I’m going crazy” post.

I will never take my ability to drive a car or simply walk anywhere or carry a cup of coffee or get up in the middle of the night to go to the bathroom or empty the dishwasher or my self-reliance for granted.

I am still on crutches.  Four weeks didn’t seem so long when Dr. A told me about it in the pre-op appointment, but you know how cocky those bone breakers are.  “It’s four weeks on crutches and three months of PT.”  Three months is a long time.  Four weeks? I guess that’s not so bad.

It’s bad.  It’s bad because it isn’t four weeks on crutches.  It’s four weeks of 10% weight-bearing on the surgical side.  After four weeks, it’s another two weeks of practicing weight-bearing which is a long and painful process.  So, really, it’s another two weeks of trying to learn to walk again, and I still can’t drive! Well, I can only drive a few blocks.  This is intolerable! Yesterday was my first day of beginning the weight-bearing exercises.  I did not enjoy it.  I am trying to remember that I once walked.  Surely, I will walk again and this will be but a happy memory.  It feels like an impossibility right now.  I never imagined that a torn anything in a hip could cause this much trouble!

What has been the most interesting thing in this entire endeavor, however, has been observing my husband.  I’ve written a little bit on this blog about my marriage.  The past two years have been challenging what with Grace’s sharp decline.  It’s not uncommon to experience relational difficulties when a child is diagnosed with a severe health condition or mental illness.  I have been down and out.  I can’t go into the basement to do laundry.  I can’t carry the laundry baskets.  I can’t really clean anything.  I can’t vacuum.  I am just now able to get into the kitchen and cook although it’s awkward as hell.  He has had to do everything, and this is a man who has never done that.

I have suspected for a few years now that he was on the autism spectrum–high functioning, mind you.  He is so similar to our youngest daughter in temperament.  He has on more than a few occasions said how similar he was to her as a child.  She has high-functioning autism (HFA).  Part of me has wanted to dismiss this idea because I have wanted to believe that all his quirks and very annoying habits would change given time and effort.  I have, however, only seen the chasm between us grow wider over the past two years.  In the wake of Grace’s illness, I have sought greater emotional intimacy, and he has sought out more time alone.  He has morphed into Spock, that pointy-eared bastard as Bones once called him, and I have become the single-minded and overly emotional Jim Kirk.  We are at odds.  All the time.

So, forced into a submissive state of dependence, I have observed.  I have done my best to practice what I have internalized from DBT.  Observing without judging.  It is amazing what can be learned when we suspend judgment.  I have watched a man try as hard as he can to look after me and meet my needs while trying his hardest to meet the needs of his children.  The physical needs.  Driving to and from school.  Feeding.  Doing laundry.  Helping with homework.  I can help with homework, but this was physics homework.  I will hiss and skitter under furniture at the mere mention of the P-word.  He has gone to the grocery store.  He has barely worked.

What I have seen is that he can’t be emotional and practical at the same time.  He has modes of operation.  Sort of like Mr. Rogers and his sweater.  He requires a ritual to move from one mode to another.  I could write at length about the rituals he requires to make the transition from one persona to another and his intense need for solitude.  This lack of emotional affect or even cognitive empathy, however, is what causes him to act like an asshole.  He isn’t trying to be a jerk.  He just isn’t able to infuse any of his actions with any meaningful emotional content.  He behaves like Spock.  If I’m Jim Kirk in the relationship, then I’m constantly trying to provoke an emotional response in him which looks like baiting behavior.  Where’s the passion, Spock? Why do you appear to be so cold? Do you even care about us? You look miserable!

His response is completely rational.  Of course, he cares.  Look at what he’s doing.  He ticks off what needs to be done.  We are provided for.  Once the items are checked off the list, he then retreats into his bedroom and disappears for hours.  If we need him, we simply need to tell him.  He cannot anticipate a need.  He cannot read the cues.  He does ask so that he’ll know, but he will never be capable of “reading” people or a situation and understanding what is required.  Emotional intimacy is not something that he truly wants.  He doesn’t have a social drive.  He wants his family to be happy.  He works hard to provide opportunities so that we can pursue happiness.  It never occurred to me that he didn’t see himself as a part of that happiness.  He saw us going out into the world to engage in that pursuit while he happily stayed in his cloister pursuing his.  It is a shock to me.

This is what I have learned during my convalescence.  I told him the night before last very casually that I wondered if Milly might have inherited her ASD from him.  “I wonder if you might be very high functioning on the autism spectrum.”  His response? “Oh, I know that I am.”

Really? Since when? And, if that’s true, then what does that mean going forward?

Uhura loved Spock.  Jim was his friend.  On any given day lately, this is my inner monologue:


Interesting times, interesting times.  It’s a good thing he doesn’t have bangs (watch the clip to understand the reference).


Building A Better Marriage

In which MJ is verbose and apologizes for that beforehand

Since I’m plumbing the depths this week, let’s just call it the theme of the week and keep going.  I want to talk about marriage.

I love talking about human behavior in the context of relationships.  Relationships of all sorts are messy, and, for some reason, I really like that.  I like the complexities, the nuances, and the fact that no matter how well you know someone there will always be something new to discover about them.

Marriage without children is complicated enough.  The idea that two people are going to commit to love each other for the rest of their days seems almost outdated for the 21st century.  After Gwyneth Paltrow and Chris Martin’s “conscious uncoupling” hit mainstream media sources and their philosophy behind their decision–loving and committing to solely one person does not mesh with human nature–I imagine that there are quite a few people nodding their heads in agreement: “Yeah! I’d like to consciously uncouple from my spouse, too! I think my human nature would like another partner now, thank you very much.”

It’s a very tempting idea.  My physical therapist even said something similar last November! I was lying on my back while she was doing something painful to my neck.  All the while, she talked about marriage and relationships.  We change.  Who we were in our younger years doesn’t line up with who we are twenty years later.  Sometimes we just don’t fit with our partners after so much time has passed.  Sometimes we must move on.  We just don’t like each other anymore.  Then she left the room so that I could get dressed.

Her words struck a chord in me.  Marriage is indeed complicated enough without children, but what might marriage be like when one or two or three of your children are diagnosed with something? How complicated does it really get?


I’m not going to cite any statistics because the stats are all over the place.  Suffice it to say that the divorce rate increases when special needs enter the picture.  Why? Well, from my own experience as well as observing married friends with special needs children, I can tell you that two of the primary reasons that a decent marriage tanks under the pressure of raising a child or children with special needs are:

  • unmet hidden expectations
  • poor communication

Unmet hidden expectations plague every relationship.  We think that we’ve been clear about what we expect from our partners, but really we have all these hidden expectations that even we didn’t consciously know about.  When they aren’t met, however, our disappointment, feelings of rejection, and resentment come out, and usually they come out sideways.  Our partners don’t know what they did wrong, and we’re often not entirely sure why we’re behaving badly.  We just know that we’re hurt or mad or disappointed.

For example, when I was newly married I had a picture in my head of what being pregnant would be like (expectation).  I imagined that my husband would go with me to the prenatal OB visits (expectation).  If he didn’t go to every appointment, I thought he might go to a few (expectation).  I imagined that he would want to go (expectation).  It was our baby after all.  This would be an experience that we would share (expectation).  As it turns out, nothing like that happened.

My husband was in the middle of building his career and was not able to go to one prenatal appointment with me.  I went alone to all of them.  Rationally, I understood the reasons.  My emotional mind, however, was hurt.  The “postcard” that I had created over the years around the pregnancy experience looked nothing like reality.  All of my expectations were dashed.  This is just one experience–one postcard–that defied my expectations.  How many experiences like this might be strung together in an almost 20 year marriage? Oh, so many.

What might our expectations be–what might the “postcards” look like–when a special needs child is introduced into a union? What do we imagine our life will look like? What do we imagine our relationship will look like? What do we imagine our communication will look like?

In my case, I thought that we would share the experiences.  Once again, I imagined that we would go to a few key appointments together.  I thought that we would be able to discuss our feelings.  I know, it sounds so female, but, honestly, that’s what I imagined.  Looking back, I see that I was a bit misguided in my expectations of my husband regarding what I expected of him in the way of emotional sharing.  That postcard in my head was created to meet my own needs.  My husband is an internal processor.  He doesn’t like to sit around and talk about his feelings.  I do that enough for the both of us.  He retreats and processes his emotions and his grief alone.  Can this harm a relationship? Well, yes, it can, but my husband wasn’t thinking about the state of our relationship when he was dealing with Grace’s diagnosis.  He was coping with his own grief and reaction to his daughter’s decline.

That very dynamic is one of the primary reasons marriages fail under the pressure.  All communication gets locked down due to an emotional response to the circumstances.  Instead of couples coming together for support, they retreat from each other.  A rift forms, and all sorts of negative things fill the void.  It’s very hard to build a bridge over that chasm once it’s there.  Why? Well, the relational pressure of a special needs diagnosis in a marriage amplifies the problems that are already there, and you’ll find that you are no longer able to overcompensate for your partner’s deficits anymore because you are now forced to overcompensate for the deficits being caused by your child.  You can’t fight a battle on two fronts.  Something has to give.  Most often, it’s the marriage.

So, what is the solution? How do you build a better marriage under the immense pressure of caregiving? And, I won’t lie.  The pressure is staggering.  I think I’ve aged ten years in the past two and probably have an active autoimmune disease at this point.  There are days I have to tell myself, “I outwitted and survived a murderous psychopath.  I can survive Grace’s schizophrenia.”  We are playing for keeps here.  So, what’s the strategy? Truthfully?

A year ago, I fantasized about not being married.  The marriage felt desolate.  There is nothing more lonely than feeling completely alone while married.  Total alienation from your spouse.  I was practically killing myself trying to take care of my girls and meet everyone’s needs.  All the time.  I felt a certain amount of hopelessness about my future.  About my future happiness.  I felt very trapped.  Trapped in my marriage.

Some time ago, I bought The Dialectical Behavior Therapy Skills Workbook in an effort to do some research as well as add to my skill set so that I could help Eadaoin and Grace at home.  I was already familiar with DBT, but I wanted to be thorough.  One of the first chapters in the book focused on radical acceptance.  As I read through the chapter and came to the list of exercises, I started to sweat.  I saw how little I actually accepted my husband for who he was.  I observed how critical and judgmental I could be just in my thoughts.  I realized that I needed to practice radical acceptance in the present.  I needed to go first.  Someone has to go first.

When relationships are in gridlock, someone has to take the first step.  I took the first step internally by shifting my paradigm.  I started seeing my husband through the lens of radical acceptance.  All those annoying habits? No more judgments.  All those times in the past where I felt disappointed or failed? I couldn’t change the past.  I needed to stop fighting reality.  There was nothing I could do to change how I arrived at the present moment.  I needed to begin accepting that I was where I was.  No more blaming.  No more accusing in my mind.  Radically accept that this was my reality.  Who we were at that moment was who we were.

That shift changed everything.  It was subtle, but it was there.  It was not easy to stay in the place of radical acceptance.  I caught myself on numerous occasions wanting to judge.  I caught old resentments bubbling up, but then I had to ask: Would I want to be judged according to who I used to be or according to who I am now? Slowly, things thawed.  As I worked on my part of the bridge, he started building his part of the bridge, too.  I learned to listen better.  He started sharing more because I was actively accepting him as he was now rather than reminding him of who he used to be.

It’s funny because I have always been a proponent of taking responsibility for our own happiness.  I have always said that I am responsible for my happiness, but, somehow, I did not put that into practice in my marriage.  When you practice radical acceptance, the by-product of that is that you will learn to be responsible for your own happiness and well-being.  I was finally able to give my husband room to expand and be himself, and his expansion has not cloistered me in any way.  On the contrary, our marriage is better now than it’s ever been.  We collaborate and communicate better now after Grace’s diagnosis than we did before.

It is possible to go through very difficult times in a marriage, endure not one but two special needs diagnoses (Milly was diagnosed with autism a few years before Grace was diagnosed with a schizophrenia spectrum disorder), and come out on the other side better and stronger than you were before.  This is the wonder of human beings and what we’re capable of.  Yes, humans can be very destructive, but we can be very creative, too.

Why bother blogging about this? I know a number of women who are the primary caregivers to some wonderful children with profound needs.  They love their husbands, but they feel isolated and alienated in their marriages.  They feel like they are bearing most of the burdens associated with caregiving.  They have had to give up or postpone their own aspirations in place of caregiving.  They feel like they are “doing it all”, and, because so much is required of them, they have little to no time for self-care.  Gone are the haircuts.  Gone is the exercise.  Mani-pedis? What are those? Showering? Uh…if they’re lucky.  Eating a balanced diet? Do french fries and crust off the floor count? Sleep? Who’s counting? Hobbies? What are those? Friends? Who has the time, and where did they run off to?

While the women are trying to patch the dam and wishing for eight extra arms and about three clones, their husbands are coping in their own way.  I see a lot of gaming and working extra hours to avoid coming home.  The women can’t wait for their husbands to come home so that they can at least go to the bathroom alone and eat something other than coffee and a stale cracker while the men’s view of home is one of ‘sanctuary’.  When he comes home from work, he doesn’t want to have to be “on” there, too.  Can’t he just relax and do what he likes? What? He’s expected to work in his home now? If a caregiving woman answers that question, then the answer will be something like a shrieked, “YES!” When you caregive in a home environment, then your home is your workplace.  You are never off the clock.

So, there are two competing views of “home” here–workplace vs. sanctuary.  Underlying these competing views are those hidden expectations.  The primary caregiver, often the mother, views her husband as back up and relief.  He gets home, and she gets to clock out for a while.  The husband views home as a place of rest.  He gets home, and he is off the clock.  He is emotionally and physically unavailable.  He has worked all day.  Why should he have to continue to work? But, his wife has worked all day, too, often in complete isolation.  Doesn’t she deserve a break as well? One partner is taking their reward at the expense of the other, and the child who needs the care is neglected by one parent–the one who views home as sanctuary.  If one parent is making himself or herself unavailable to a spouse chances are s/he is doing it to the children, too.

This very dynamic used to be the dynamic in my own home, and I see the same dynamic in many other marriages.  It is possible to overcome and change that dynamic.  That’s why I’m blogging about it.  I hear a plethora of women complain about this, but I seldom hear women say that they’ve had any success in changing it.

It’s possible.  It’s hard.  It’s really painful.  It takes commitment and a good deal of self-awareness.  It also takes a willingness to look in the mirror and be curious about where you might be contributing to the gridlock because I can guarantee that you are.  I was.  I could not change my husband, but I could change myself.  If you really think about that, the fact that you can change yourself in any relational scenario is pretty outstanding.  Why? Well, if you’re 50% of the problem and you can change yourself, then you can change 50% of the problem by simply changing yourself! How much of your life would change if you changed 50% of the relational problems in it today? That’s a pretty big question, isn’t it?

Doesn’t that give you hope though? Change yourself.  Build a better life.

Start here:

The Dialectical Behavior Therapy Skills Workbook: Practical DBT Exercises for Learning Mindfulness, Interpersonal Effectiveness, Emotion Regulation & Distress Tolerance




Empowered Relationship

Okay, okay, this is a bit off the beaten path of this blog, but the core theme of this blog is ’empowerment’.  So, I’m stopping for a moment to talk about something near and dear to my heart–relationships.

Raising kids will do a number on your relationships.  It’s very hard work.  Gone are the days of putting dinner on hold and having sex anywhere you’d like.  There’s too much to do, not enough time, and relationships start to feel a lot more like a tax-paying corporate entity than what you dreamed about when you were young and watching “The Princess Bride” (or is that only me?).  Figuring out how to communicate in a way that’s effective rather than corrosive seems to be important not to mention remembering why you even embarked on such an absurd experiment in the first place! Men want to “fix it”, women just want to be heard, and, for the love of baby hamsters, whose freakin’ socks are these on the bathroom floor and why am I picking them up yet again? Ahem…

There is a common argument in my home.  Actually, we have two arguments, and I should just record them and play them at random times throughout the year because they are scripted! It annoys me to no end.  They go like this:

Argument I:

I’m tired of begging for sex.  Please…have sex with me.  My ego can’t take much more of this.

It’s not that I don’t want you…It’s just that….

(Don’t assume that the gender roles fit here.  You’d be surprised…)

Argument II:

I cleaned the kitchen.

Why didn’t you ask for help?

It needed cleaning.  I saw that it did.  So, I did it.

Well, sorry.  You should have asked for help if you had wanted help for that.

(Assume that the gender roles fit for this one.  I am The Cleaner in this scenario as I am in almost every other one.)

Argument I is and will continue to be a work in progress.  I suspect Argument I will not be resolved soon, and my self-esteem will be stuffed through the proverbial meat grinder for years to come.  Such is life in a longterm relationship.  That’s what Iron Man movies, erotica, chocolate, and my girlfriends are for.

Argument II, on the other hand, is something I finally figured out! I have been dealing with Argument II for a VERY long time.  After talking to my married-with-children girlfriends, I have learned that Argument II is also afoot in their homes as well.  It’s a problem.

Let’s break Argument II down.  Is there anything in Argument II that is worth taking note of? You bet.  Women often fail to ask for what they need or want.  They assume that their partner should “just know” based upon what? In my home, we call this a Theory of Mind Failure or ToMF–“You know what I’m thinking.”  Well, dudes don’t know what women are thinking, and we do need to communicate our wants, needs, likes, and dislikes using actual words rather than making weird faces, sighing loudly, rolling our eyes, and withholding sex to make a point.  What’s more, we need to practice being disappointed.  We are not always going to get our way even when we do communicate.

Would you please empty the dishwasher?

Well, I’m in the middle of something right now.  I can do it in an hour.

Okay…::inward sigh::


Would you like sexy rumpus later on?


Okay…::inward sigh::

But, practicing asking for help or stepping out and asking for what you want are all better than being passive-aggressive or stewing silently because your partner isn’t a psychological Superman–“You were supposed to be able to see through my skull and read my mind, jackass!” As far as I know, Psychological Superman only exists in lady porn.  I digress…


You read my mind…

Wherein lies the “fallacy” in Argument II? I’m going to call it personal responsibility.  My husband and I have been going round and round for close to two decades about this one, and I have had the hardest time putting words to how I feel when I am confronted by his statement: ” If you want help, then ask for it.”  Of course, what he says makes sense.  If I’m beginning a new project, trapped under something heavy, being attacked by a rabid squirrel, or having an allergic reaction, I would indeed need to ask for help.  I can’t assume that he would just know that I needed help.  But, what about a dirty kitchen or his children or a dirty bathroom that he uses or laundry to which he contributes or a yard that he owns or household maintenance on a home that he also owns? One either takes an adolescent stance and says, “Should I be helping you out with this?” or “What is my role in this since we are partners?” There is a huge difference between those questions.  The first implies passivity and a lack of a sense of ownership while the other implies collaboration and initiative.

Last night, my husband said he would clean the kitchen.  He was sitting next to the kitchen while I gave Grace and Milly their dinner and medication.  In order to put their dirty dishes away, I had to empty the dishwasher.  He was sitting right there not more than 15 feet away as this was going on.  I just continued talking to my children and cleaning up the kitchen because it needed to be done.  I am not my husband’s mother.  I am not here to say: “Darling, you said that you were going to clean the kitchen.  The kitchen needs to be cleaned now, don’t you think?”  It was 9 PM.  At what point did he think it was going to be an appropriate time to get down to business? He had been sitting at his laptop for two hours! I finished the kitchen, got Grace to bed, and told him the kitchen was done.

I said I would do it.  You should have asked for help.  When did you clean it?

You were sitting here the entire time I was doing it.  I even talked to you.

I wasn’t paying attention.

Well, here’s the thing.  I’m responsible for asking for help when I need it, but I’m not responsible for you.  I’m not responsible for whether or not you are paying attention.  i’m not responsible for whether or not you follow through or whether or not you are paying attention to the time.  That is not my job.  You don’t have a cognitive disability.  You know that the girls have a medication schedule.  You are their father, and you are the other responsible adult in this house.  I am not responsible for keeping you alert.  That is your job.  If you were my son, then it would be different.  But, you are not my son.  You are my husband.  Big difference.

You can imagine how that went over.  I wasn’t angry or even mean when I said it, but this has been one of the bigger issues between my husband and me.  He has been putting the responsibility for his behavior and choices on me and calling it “a failure to ask for help” when, in reality, it’s been a failure on his part to take the initiative in his role as father and husband.  This relational dynamic is very common.  Now that I have a response for it, I will be able to do something about it.  In partnerships where there are children with special needs, working out these dynamics is very important because there is often one parent who is the primary caregiver.  It’s easy to become overwhelmed and stressed.  When that happens, healthy and respectful communication can break down quickly.

Don’t misunderstand me.  I’m not implying that I want this:


or this…


or even this, but, I’ll admit that I’ve had fantasies…


And, fine, I’m woman enough to admit that this turns me on…


At the end of the day, I don’t want my husband to be anyone other than who he is, but part of being in a relationship involves growth and maturity.  I am not who I was five years ago and nor should he be.  I can’t develop new skills while he remains stagnant.  This will cause overcompensation and emotional fatigue.  Change is actually a good thing, and we should always being evolving and developing as humans so that we continually bring something worthwhile to our relationships.  When one partner gets comfortable, depends upon the other to pick up the slack, and refuses to engage in their own process of development, then you end up with gridlock.

I strongly dislike gridlock, but gridlock is often necessary because the tremendous discomfort that it brings causes us to begin asking important questions like, “Why am I feeling like this?” and “Why have I never noticed that I hate the way he chews his food?”

Where do we go from here? Well, I do what I do.  I put things into perspective.  I will not engage in catastrophic thinking and blow anything out of proportion even though I wanted to slap my husband across the face last night for his blatant insouciance.  Take the high road, call up a girlfriend, vent, eat some chocolate, clean something, drink some coffee, clean something, go on a walk, clean something, look at something that makes me laugh, clean something, and, once I’ve got my head about me, engage The Husband.

It’s my process, and it works for me.

So…this is marriage.  It is what it is.  The Good, The Bad, The Annoying.  It’s also glorious at times, and my husband is actually a wonderful human.  He did bring me chocolate yesterday for no other reason other than because he thought I would like it.  See? If there can’t be sex or a clean kitchen, then let there be chocolate.  One out of three ain’t so bad…I guess (What am I saying? I’m dragging his ass to a psychiatrist and asking about Wellbutrin.  SSRIs are killer on the libido!)