Guest Post: Living at the End of the Bell Curve

Scott Brennan is a friend and wonderful writer. Or a wonderful friend and writer. In either case, I think he would tell you that first he’s a husband and father (he and his wife Mary Elizabeth have a teenage daughter and preteen twins). I consider him a mentor parent.

I was blessed–truly blessed–to cross paths with him at Trinity Church Wall Street in Manhattan and I thank the Internet for keeping us connected.

In 2009, Scott’s wife Mary Elizabeth collapsed on a train platform in London, while Scott, Mary Elizabeth, and their oldest daughter Charlotte were on a trip. Mary Elizabeth suffered an internal bleed in her brainstem that she miraculously survived. But it put her in a coma for two months, and Mary Elizabeth and Scott have been adjusting to life on the recovery path ever since.

Scott writes at Get Better Mary Elizabeth about their story. His posts can be raw and open and I’m always thrilled by his candor.

Today he’s here at Momsicle talking about parenting after one parent changes.

Living at the End of the Bell Curve

Several weeks before she gave birth to our first child,  Mary Elizabeth shared with me the very serious concern that I would be a lousy parent and that she would have to do everything. While it would be easy to chalk this up to hormones, or pregnancy jitters, she had a point.

I was adopted at 3 months old, and raised by two alcoholics, with at best, very poor parenting skills, and at worst, abusive and schizophrenic behavior. My life as an only child was filled with neglect, rage, and situations that no child should have to endure.

But still, I turned out ok, and was a reasonable spouse, colleague and friend.

But I understood Mary Elizabeth’s fear: With role models like my parents, how would I be as a parent? Would I be capable of providing the tenderness which was withheld from me while growing up? Could I cope with the stresses of parenthood without reaching for a bottle?

As it turned out, her fears were unfounded.

I took to parenting like a fish takes to water.  I doted on Charlotte, getting up in the night, bathing, swaddling, and diapering like a pro. She was our light and joy and we showered love on her in rich abundance. Two years later, we found out we were having twins–a wonderful surprise that unnerved us a bit given the prospect of being outnumbered.

We had a few harrowing years where we didn’t go out much except to work and church, and would more than likely have a patch of spit-up somewhere on our clothes no matter how hard we tried to avoid it.

But our kids were happy and healthy and again I rose to the occasion, despite my difficult upbringing. We led a hectic, but happy and fairly conventional family life–filled with good humor and love.

All that changed late in 2009 when Mary Elizabeth collapsed on a train platform in London while she and Charlotte and I were there for a week.

She was rushed to Royal London Hospital and diagnosed with what the doctors thought was a fatal bleed in her brainstem. It was indeed a bleed in her brainstem, but it wasn’t fatal. After being in a coma for two months and hospitalized for another two months, she came home to us and is an integral part of our family life.

But that rainy dark night changed everything. Standing in that grimy little family room in Royal London Hospital, as the nurse handed me my wife’s engagement ring and wedding band taped together and the doctor gave us the dire prognosis, my parental status changed dramatically–and forever.

As soon as an hour after we got that news, Charlotte turned her tear-stained face to me and uttered the plangent cry, “Don’t you die, too!”

Suddenly there was a lot more on the line.

I had almost immediately felt Mary Elizabeth’s absence since we relied on one another in situations like this, but it hadn’t hit me until Charlotte spoke that this family now depended on me and me alone. While before, one of us could always relieve the other one–or even take a day off–that was now a much more difficult prospect.

Several days later, while breaking the news over the phone to eight-year-olds Clark and Louisa who were back in New York, I felt the enormity and surrealism of the situation overwhelm me again. These poor kids, lacking at least for the time being a mother, have one parent, and that parent is me.

After I sent Charlotte home a week later, and stayed on in London for 3-and-a-half more months, I became a parent without children.  Family and community at home enveloped them in warm and loving arms and when I spoke to them, they seemed absolutely fine–happy to speak to me, but not apparently needing me so much.

I on the other hand was not fine, as I realized poignantly that perhaps I needed them more than they needed me.

Keeping a nightly vigil by my sometimes-conscious-but-mostly-unresponsive wife in a hospital 3,000 miles away from home, I felt disconnected, adrift and most certainly bereft.

And part of that void was not being able to take care of my kids, or my wife–those responsibilities taken up by family, friends, and nursing staff. Thank God for my old and new friends in London who embraced me with good cheer, kept me busy and supported me through those dark cold London winter months.

But soon enough, it was springtime and Mary Elizabeth recovered sufficiently to travel back to the States, and then rehabilitated enough to come home.

It was of course awkward at first and as I found out from attending several caregiver support groups, ours was a fairly unique demographic. Children taking care of their elderly parents, or elderly spouses caring for each other were common scenarios at these groups.  But a middle-aged husband, caring for his incapacitated wife and three school-aged children wasn’t a model that I had seen anywhere.

But I was used to living at the far edges of the bell curve.

Shortly after I turned 40, Mary Elizabeth and I found my birthmother and reunited with her, along with a half brother and two half sisters. It turned out to be joyful, fulfilling, and ultimately redemptive–but again not a common situation.

There was no blueprint for this kind of relationship–we had to feel our way, and in essence do what felt right for the situation.

As anyone who has read my blog knows, I’ve struggled to accept our situation and have had a hard time feeling good about what happened to us, and where we are.

While Mary Elizabeth’s intellect and memory are completely intact and anybody who hasn’t seen her since before the stroke will see in her the old Mary Elizabeth, there have been significant changes. She is physically dependent on other people, and likely will always be–to an extent.  She is not easily understood by strangers, and while her new aspiration is being a stay-at-home mother, she can’t drive, cook, or do many of the things commonly associated with that role.

Our family dynamic has changed. What had been shared responsibilities are now completely on my shoulders.

Like any family, there have been significant challenges, which are now borne by me alone. I’ve done a good job meeting them, but at time feel wracked by the uncertainty that I’m doing a bad job, and the guilt of resenting that I’m overburdened.

This is difficult to say, but sometimes I feel like I am the parent of four kids–two 11-year-olds, a 14-year-old, and a 51-year-old who requires more support than the other three.

But that’s ultimately an unfair and shallow assessment because if I look beyond Mary Elizabeth’s physical and cognitive disabilities, I see the vibrant, independent, and loving woman I married 20 years ago.

Our kids have taken all of this in stride, but I think their relationships with me as their father have changed as well in unexpected ways.

They’ve become much more aware of the needs of others, and have learned through necessity to be helpful and solicitous. I recognize this when comments come home from school about how helpful they are in class.  There’s a maturity that has been thrust upon them–particularly on Charlotte–and there’s a candor in our relationship which I didn’t see before.

I am the first to admit to them that I’m struggling and need help–not in a pathetic or even weak way–but in a straightforward, honest way. I think they respect that I’m not all-knowing and omnipotent and admitting that I make mistakes robs them (the mistakes, not the children) of their power.

At the same time, I have to maintain some authority and dominion over them, since they are still kids–although my 14-year-old might be reluctant to recognize this.

It’s incredibly poignant and touching to see my kids interacting with Mary Elizabeth in a perfectly natural way, although I think the dynamics of that relationship have changed as well.

Mary Elizabeth feels that the kids don’t listen to her, or don’t take her seriously because of her limitations.  This may be true, but I’m not entirely sure that they listen to me any more than they listen to her. But I do sense frustration sometimes from the kids that communication isn’t what it used to be, and that Mary Elizabeth can sometimes seem demanding.  I am hopeful that this frustration will give way to a deeper understanding of compassion and empathy as they get older, and that they continue to listen to their hearts.

So thinking of Mary Elizabeth’s fears expressed to me in 1993…

I think that I’ve turned out to be a reasonable father, tempering love and affection with guidance and yes, discipline–ever more conscious of the new context of our family life. 

I do the best I can as a parent–acknowledging the bare truth that I am neither an angel nor a devil–but a human, through and through.

***

Thank you, Scott! I hope you’ll be back on the blog again.

If you want to find out more about Scott’s story, check out his linked timeline at Get Better Mary Elizabeth. 

Scott also collaborated with me on a travel post about road trips with kids. You can find his great tips here. 

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2 responses to “Guest Post: Living at the End of the Bell Curve

  1. Wow, wonderful post Scott! Thanks for sharing your heart! Many blessings to you and your family!

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