Tag Archives: Family

Three Years Four Months and One Day

Benson 6

That’s what June fourth will be this year.  Three years, four months, and one day since Miss Elliott died.  Which also marks one more day than she was alive on earth.  She will now, and forevermore have been gone longer than she ever was here.

It’s hard for me to stomach.  Hard to accept as a mother that my child is gone from this life forever.  The more time passes the more surreal it becomes.  Sometimes I conjure up memories of our life with her and they seem like they should belong to someone else.  Being in the throws of her life, consumed with the medical fragility of her tiny body and the severity of her condition was life as we knew it, but now, having been so far removed from that life for so long that in many ways, although it still feels like yesterday, in others I can’t recognize it at all.

And the nightmares I have because of her death still haunt me today.  For some reason my brain has decided to manifest completely unnecessary and inaccurate guilt associated with her life, and my care for her as a mother.   I dream repeatedly of her existing somewhere in the background of our lives and I have forgotten about her.  Forgotten to feed her.  She is starving.  She is sad.  She is lonely.  She is silent.  And she can’t do anything about any of it.  I fail her over and over in these dreams.

The truth is that in her lifetime I was never without her. She lived cradled in my arms.  I fed her five times a day.  I massaged her arms and legs to help her circulation.  I bent and stretched them to keep her muscles fluid.  I bathed and dressed her every day complete with a matching bow in her hair.   I sang to her.  I took her everywhere with me.  I loved her fully, and unconditionally until the day she died.  And I love her still.

I think these dreams come to me as a symptom of my guilt over her death.  As powerless as I was to stop Tay-Sachs Disease from ravaging her body, and as certain as her future was, I still, as a mother, could not accept that my child would die.  Of course, logically, I did understand it and knew it would happen.  But in my heart, the acceptance of this hard-fast fact has never come to be.

When we wrong our children, when we fail them we’re usually given the chance to explain or make it right at a later date.  With Miss Elliott gone, I do not and will not ever have the opportunity to do so.  So many times my worry takes over and leads to the entrapment of guilt.  Guilt that what if I didn’t feed her enough, hold her enough, massage and stimulate her muscles enough?  Was she hot when I was putting a blanket on her?  Cold when I was taking one off?  I will never have these answers.  Only wonder and only worry.    I’ll never have an opportunity to right my wrongs or do better for her.

The day before Miss Elliott was born I looked at Skylar and said “It will never be just you and me again after tomorrow”.  How I hate the thought of the false security of this statement now.

When I look back on the memories of the years she was with us sometimes I don’t recognize those people.  They seem so foreign.  And it saddens me until I remember all that who we are today is because of who she was.  She was a little girl with a perfect soul and a big message about the beauty and importance of every life, no matter how short, no matter how small.  I will be forever grateful to have been her mother for the three short  years she was here.

Portrait of a Mother

For the one who is, the one who was, and the one who never would be,
for all my children.

I had a daughter once who died.
I have another by my side.
I had a son I’ve never known,
he who will not know our home.
A girl who’s future so small and bleak,
The one whose life is gone, as we speak.
Lit softly in my arms to rest
and nestled her head against my chest.
Her sister survives in a world below
while she looks on as we onward go.
A distant mortal memory of heart,
but one that time nor space could part.
All of her, a part of me.
Shadows of her life I see.
Dancing in and out of time
reverberating through this rhyme.
Her life I carry with me now
as I trudge along somehow.
For her sister’s sake, I survive.
I’m learning how to be alive.
Though my son was never mine,
he existed within my mind.
A figment of imagined child,
With thoughts of him my mind goes wild.
A boy we were to never know.
A son, not ours to call our own.
I love him now, I loved him then,
I’ll love him ’til my days shall end.
For all my children near and far,
for all of them, for who they are,
My heart belongs to every one,
and will until my days are done.

Holding On and Letting Go

When you get a phone call that your ninety year old grandmother is in the isolation unit of the hospital with double pneumonia and a “leaky” heart valve, you go.  It doesn’t matter what time of day it is or where she is, you just go.  When we received this call about my husband’s grandmother two nights ago in the late evening we made arrangements to get on the road to go see her right away.  Luckily she only lives a couple of hours away and we could be there shortly.

The time in the car was fraught with, what ifs?  It had been four, maybe five years since we had seen Grandma Benson.  Instantly, Loren felt guilty over this fact.  Some family issues had caused tension in the past and things had not been the same these last few years.

Loren, his brother, and his mother were all abandoned by his father when the boys were just one and three years old.  I don’t say that to be dramatic, but I won’t mince words, completely abandoned is what they were.  He decided to walk out of their lives, as well as the lives of the rest of his family and never looked back for no other reasons than selfishness and cowardice.  There were never any stray birthday cards,  random phone calls, or sporadic visits.  They just plain and simply never saw him again.  His mother tried over and over to take him to court to at least make him financially responsible for the children he knowingly and willingly helped to produce and then walked away from three years later.  But for a dead-beat who mainly worked under the table he always claimed he didn’t have any money to pay with and couldn’t produce a paycheck for the state to garnish so no financial support was ever given.

Their mother, suddenly finding herself alone with her two young boys went to school, earned her master’s degree, and became an artist and teacher.  Their whole childhood she made a concerted effort to keep the boys involved in their grandparent’s lives.  Time went on, the boys grew up, and became hard working men with loving, stable families who adore their children and are there for them in every way.

Then one day we hear from grandma that “Michael” had been stopping by to see her.  A rift was born.  Grandma forgives her son, of course, in the way that only a mother ever could.  I’m told grandpa, whom I never met, wouldn’t be so lenient of this transient’s sudden resurgence, or her acceptance of it.  We certainly weren’t.  No one felt he had any right to access even the smallest corner of the boy’s lives.  No one could stomach the thought of him in such close proximity after all these years of nothingness.  What did he want?  Why was he there?

What right did he have?  What did he think as he sat in his mother’s house and gazed at her pictures on the wall?  Did he just keep pretending his children didn’t exist?  Leary of ever running in to him, and grandma misunderstanding, thinking their mother had told the boys (men in their thirties by now, mind you) not to see her anymore because of Michael’s presence, their time together over the holidays, and other visits and phone calls became strained, and eventually nonexistent.

We arrived at the hospital, flowers in hand, and grandma recognized Loren right away.  Ninety years old, and still sharp as a tack and feisty as hell.  Skylar had gotten so big, she had said.  And she asked Loren what he was doing all the way over here (in her town).  She had been in the hospital for almost two weeks.  She told us how she was feeling, and talked about how bad the hospital was.  The male nurses whom, she presumes must not be able to become doctors, and are settling for nurses instead.  The constant poking and prodding.  She doesn’t like the food, it’s bland.  We offered to go out and get her anything she wanted to eat, or otherwise.

“Oh no,” she said.  “Michael’s been bringing me KFC and Arby’s.”  She floats his name across the room as if it’s nothing.

Stunned, Loren turns white.  I know what he’s thinking, but we don’t say a word to each other.  We had no idea Mike was still hanging around.  Would we have to worry about possibly running in to him here?  I don’t know how Loren would react.  I don’t know if he could handle it.

The nurse comes in to start an IV.  She looks at Loren and says “Are you Mike?  I’m supposed to call Mike”.

“No, I’m not.”

If she only knew what a shocking question that was.  Loren excuses himself to uses the restroom, but comes back shortly thereafter.  “I got spooked,” he tells me.  “I saw a man standing at the end of the hall that I thought looked enough like me that maybe I should know who it was.  He just stared at me strangely until I turned around and came back.”

I’ve never seen a picture of Michael, and any of the ones Loren might have seen growing up would be thirty years old now.  We stay for a while and chat with grandma some more.  We tell her we’ll come back when she’s out of the hospital and take her to lunch.  We write down our address and phone numbers for her, again, just in case they had somehow been misplaced over the years.  It’s clear that she needs to rest, so we go.  We ask the nurses to please notify us if her condition changes.

After we get to the car Loren tells me, “I couldn’t believe it when she said my dad’s name.  I don’t know what I would have done if he had walked in there.  I mean, they don’t even write movies about stuff like that,” he says.  ”  Who knows what kind of response you’re supposed to have.  I don’t even know what the appropriate thing would have been to have done.  I guess I would have just kept calm, and told grandma I love her, said goodbye, then left.  She doesn’t need there to be a problem.  I probably would have just ignored him, treated him like the stranger he’s made himself to be.

I’m glad he didn’t show up.  And I’m glad I got to see grandma.  I’ve been feeling guilty about not seeing her these last couple of years anyway.”

On the way home we discussed the reverberations parental abandonment causes for generations in society.  The brokenness in children that leaves them unknowingly unable to function properly and all it’s many examples projected in abuse, neglect, mistrust, lack of intimacy, inability to form meaningful bonds, sexual promiscuity, drug and alcohol dependence, etc.

Broken homes, broken world.

In Loren’s case, he had no idea his lack of a father had even affected him until he became one himself.  It’s been a painful eye opening road of acceptance and healing ever since.  We talk of Miss Elliott.  A child, so helpless, so innocent.  How could anyone just walk away and never look back?  He doesn’t understand it, couldn’t even begin to imagine how someone could commit such an injustice toward their own flesh and blood, a child nonetheless.

I’m proud of my husband for letting go of the anger and feelings of betrayal by putting others before himself.  I’m proud that he doesn’t let his childhood define him.  I’m proud of him for visiting grandma even though Michael could have shown up at any time.  I’m proud of the husband and father he is: a bigger man, a better man, his own man.








An Insider’s View Looking Out

“Just the three of you?” they ask.
“Yes, just the three of us,” we reply, every time we walk in to be seated at a restaurant.

No one can tell, but we know, of course, that it’s not just the three of us.  It’s just that the three of us are the only ones people can see.  This last week I had the opportunity to attend my fifth Annual Family Conference, hosted by the National Tay-Sachs and Allied Diseases Association.  We have attended every year since we received Miss Elliott’s diagnosis.  I knew after our first attendance, that I would never not return.  Even now after her death, I continue to return, year after year, not only for aid in my own continued healing, but also because unfortunately, I have a very special knowledge base that I feel it is my duty to assist in transferring to newly diagnosed families attending for their first time.

It’s hard to describe the level of comfort you feel in being around these perfect strangers who look and sound just like you, whose daily lives so closely resemble your own.  Especially when no one else around you in your daily life can compare or understand first-hand the way they can.  It’s an instantaneous bond that’s formed upon your first meeting with any of these families.

In my travels last week I unexpectedly met up with another family at the airport in my connecting city, who were traveling to the conference as well.  This family has not one, but two affected children.  I eagerly embraced them and their children, and we struck up conversation about our impending weekend.  Time passed and as the boarding calls began, people shuffled around, and I went back to my seat with Skylar and our bags in the terminal.  This family’s belongings were quite cumbersome.  They had special seats, a special stroller, medical devices and machines.  As the mother turned on the portable suction unit to clear her son’s airway when he began to gasp and gurgle, the onlookers ability to keep from openly gawking waned significantly.

Suddenly, unbeknownst to this family, as they went about their daily routine of caring for their children, all the eyes in the surrounding area were firmly fixed on them.  It was as if the room had darkened and a spotlight shined only over their heads.  It was an odd position to be in; an insider looking out.  I was that mother.  I was that family. But, in that moment, no one could see that.  Traveling with Skylar, I looked like any other “normal” mother.  You would never know that I had lived the intricacies of their life at one time myself.  I saw the stares, the whispers, the shifting away of the bodies around them.  While everyone had their eyes on them, I had my eyes on everyone else.  I had never watched this scene play out from this angle before. It was unnerving.  I wanted so badly to protect them, to shield them from this.  I wanted to stand up and yell to the onlookers that they couldn’t catch what these children had, or to stop looking at these people with such pity in their eyes.  I felt my blood boil, and my stomach turn.

Like I said, it’s odd to be an insider in the life of family with a terminally ill child, yet look like everyone else.  To look like an outsider, like the rest of them.  A “normal” family, if you will.  The only time I feel normal, is when I’m around the other affected families at this conference because the truth is, I am an outsider, from normal society, most people just can’t tell anymore because Miss Elliott is no longer physically with us.  When I’m with these families, I belong.  We belong together, for better and worse, in love, support, and strength for one another.

One of the new families that I met, attending for the first time this year posted this description
on their daughter’s Facebook page after their experiences over the weekend.  I couldn’t sum up the feelings of attending this yearly conference any better than Annabel’s mom, Casey has done:

“This past weekend, our family, along with about 60 other families, attended the National Tay-Sachs and Allied Diseases Association’s Annual Family Conference. I cannot even adequately express what this experience was like for me. Maybe half, or less, of these families brought their children currently battling either Tay-Sachs, Canavan, Sandhoff or GM-1 (all very similar diseases). The other families have already lost their children to these same awful diseases, but they continue to come every year to not only reconnect with the lifelong friends they have made at the conferences, but also to offer support and advice to the new families like ours. These long bereaved parents are not only surviving, but smiling and laughing even. To be able to see living, breathing examples of what it’s like to walk through this fire and come out on the other side is such a blessing. I often wonder if a parent can ever be happy again after going through this, and the answer is a resounding YES. The way these parents honor their children with their fundraising and advocacy is amazing. They also provide us new families with invaluable information regarding managing this disease. Due to the rareness of this disease, there are no “specialists” in the medical community, so the parents become the experts. If I have a question about a medical or equipment issue, I can ask these people and get an immediate response. They have a genuine desire to help.Another wonderful aspect of the conference is just feeling normal. It’s the one place where every single person knows what it’s like to be me, and there is no pity and no praise for being strong. No one is afraid of me or my child and no one says the wrong thing. Even though we may not have anything in common except this disease, the bond it creates is so strong. I am grateful for these people and am grateful for the NTSAD for providing a way for us all to connect. If you want to read more about this organization, what they do for families like ours, and what you can do to help our kids, visit NTSAD.org.”

Annabel and her mom, Casey.

One final thought I want to leave you with is the sentiment portrayed in the photo below.  Every single one of these beautifully smiling women have lost a child.  How can we all sit there and still have the ability to smile, to continue on, you may ask? The answer is easy; because we have each other.