The Importance of Being Debra Susan

Note:  Deliberately leaving out my last name.

I am Debra Susan.  I am named for two brothers, Daniel and Stanton.  I know very little about them except that they were two thirds of identical triplets.  My brother, L., is the sole survivor, despite being the smallest of the three.

My mother told me that after the three babies were born, she was lying in her hospital bed when a grief stricken woman came to her doorway.  She asked my mother why her babies survived when her baby had been stillborn.  I don't think my mother had a good answer for her.  Little could she have known that she would soon lose two out of the three who had been born prematurely.

My mother told me that Daniel and Stanton caught cold before being placed in their incubators. They died from pneumonia at the age of two weeks.  L. is now in his sixties.

When I was in high school, a girl said to me, "You mean you have two brothers who are six feet under somewhere and you don't know where?"

I shrugged.  I was embarrassed that I didn't know what had happened to my namesakes.

I asked my mom.  She told me she had donated the bodies to science so they could study premature births.

My mother really didn't much want to talk about Daniel and Stanton.  I don't know if the grief was too much, or if she simply wanted to forget.  We only spoke about them one more time, when I was in my twenties.  At that time she showed me a document pertaining to their names.

My mother was a very pragmatic woman.  I imagine that if she grieved, she kept it to herself.  For my mom, life and death were a matter of fact, almost to the point of being cold about it.

Oddly enough, I never asked my dad about Daniel and Stanton.  Almost like I considered birth strictly a woman's domain.  In a way it is, since the mother is the one who does all of the growing and initial nurturing of a baby.

According to my mom, both my dad and my maternal grandpa tried very hard to convince her to try again. This time for a girl.  She must have resisted quite some time, because I wasn't born until little over seven years later.  I was my mother's only full-term baby.

I don't recall exactly how old I was when my mom told me whom I was named for, but I have often wondered about Daniel and Stanton.  I have questions that can never really be answered.  If they had lived, would I have been born?  What if I had had four brothers instead of two?  Would Daniel and Stanton had been like L, or would they have been different?  Do they watch over me, or is that just some story I tell myself to console myself?  Had they lived, whom then would I have been named after?

I don't know what the statistics are for women, who, like my mother, lose babies during or shortly after birth. I also don't know about what the impact is on children like me who grow up wondering what their lost siblings would have been like.  I do know that we are somehow important to our families.  We provide continuity.  In all likelihood we enable healing.  At least I'd like to think so.

For a long time I was perturbed that my mom and dad hadn't given me a more interesting name. As I got older, I often thought about changing my name to Danielle Stanley (for many years I thought my brother's name was Stanley instead of Stanton)  or perhaps using that as a nom de plume. Ultimately I decided that being  the ordinarily named Debra Susan suited me just fine.

It's important for me to be Debra Susan.  My being here and bearing the name Debra Susan directly and profoundly connects me to the memory of Daniel and Stanton.  Ties me to those two tiny beings for all eternity.  In a small way my being here honors their memory.

It doesn't matter that neither L. nor our older brother, B. know for whom Daniel and Stanton were named. They are as much a part of me as my husband is or my beloved Kid O and Kid Q.   I will never have  a sufficient explanation as to why they died as infants.  Perhaps being Debra Susan is enough.

Special Needs Kids Arrive, No Patron Saints or Guardian Angels Included

I don't know if Erma Bombeck ever had a special needs child, and I am not one to pick bones with the dead. Overall she presents a nice image of the mother of special needs child, but some of it comes dangerously close to the kind of sentimental claptrap I have been railing against for years. At the end she says:

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

For a woman with less emotional wherewithal, more than a mirror is needed. Bombeck assumes that all mothers of special needs moms will somehow all be strong, and, once the shock wears off, she will do just fine. The shock, anger and grief diminish over time, but they never really wear off.

I remain haunted by an event that took place almost ten years ago. Kid O was invited to a birthday party, her first and last. My husband stayed home with the baby Kid Q, and off Kid O and I went. Her classmate's family lived on the second floor of an old walk up apartment. The apartment was dark. The apartment was packed with people, however, a mix of the dad's family and the mom's family. They had hired a clown to entertain the ablebodied kids while the two disabled kids were largely ignored, tucked away on the couches in the living room. Both kids, KId O and her classmate, A, very much wanted to be included. Despite the fact that their son was celebrating his fifth birthday, there was no joy in that apartment. A's dad was a very angry man. A's mom looked really sad and resigned. My heart went out to her. Even as she was surrounded by family, her sadness was very apparent. A wore AFOs and so he could stand but only with assistance. No one seemed interested in helping the birthday boy join in the fun. A's dad wanted me to join him in his anger and resentment. I would not.

As these two five year olds sat in the recesses of the apartment, A's dad turned to him and said, "I don't know why we hired a clown. We already have you." I filled with grief for the son and for the mom to be saddled with such a horrible man. How could he be so unkind to someone who depended on him so? I understood the resentment at being denied what everyone else had to seemed to have: a "normal" child. What I couldn't understand was A's dad lashing out at him in such a cruel and public way. A may have been only five, but he understood that he was far from what could be desired in a son.

I could also not understand the obliviousness of the rest of A's family. I suspect, sadly enough, that A's mom felt too downtrodden to ask them to see to it that the birthday boy was included, and A's dad was too filled with rage to care. It was A's birthday, and he was being ignored by his entire extended family. I could not fault the clown. She was just doing what she was asked to do, and that was entertain the kids. She largely had them participate in races such as she could in that cramped apartment. I motioned for the clown to come over. She had those banner ribbons that kids so enjoy, and I figured that, at the very least, these kids, with assistance, could play with those. She gave me a ribbon banner and she gave one to the birthday boy. And for a few moments on that dreary day, those two kids were part of the fun. Kid O lit up when I placed the banner in her hand and helped her wave it around.

While it's comforting to think that all special needs kids go to strong women with great senses of humor, it doesn't align with reality. Even with family and friends around, a parent can feel horribly alone and left to despair. The grief is real. The anger is real. The sense of betrayal all the more so. If, as Erma Bombeck wrote, special needs children do not come with patron saints or guardian angels, then God, assuming there is one, has some explaining to do. At the very least someone needs to explain to me where to go and get one, like so many triple A batteries so I can get recharged.

Raising a special needs child can be exhausting, especially when a child is severely disabled. Everything needs to be done for them. That's becomes even more demanding as a child gets older. At the very least I could do with a guardian angel who could lend a set of hands to make the work lighter. Kid O is probably around 70 pounds and around five feet tall. She is not a passive sack of potatoes when she is carried from her wheelchair to some other chair in the living room, for instance. She may cooperate or she may kick and bare her teeth as if she were going to bite me. She may also scream or shriek. She is not passive, to say the least, and, frankly, I have yet to know a child or young adult of any age who is. Kid O has little autonomy, so it's understandable that she may choose to express herself in various physical ways.

While it's true I am patient, have a great sense of humor and at least a little bit selfish, I still have times when I feel I just cannot move another inch. I cannot imagine what it would be like for someone who doesn't have my inner strength. Having any child is not for the faint of heart, let alone one who turns out to be a special needs kids. Parents of "normal" kids have enough challenges, let alone parents of kids with special needs. And sometimes people who have "normal" kids crack, too. You read about it in the papers. 'Cause kids are kids first, and they disabled or have special needs second.

My mom, the pragmatist though she is, has this odd romantic streak about marriage and children. Everyone should get married, and everyone should have kids. Kids can be wonderful, but, as any honest person will tell you, they are a lot of work. And some people are not cut out to be married let alone have kids. We all have curves thrown our way as we go through life. We cope the best we can with challenges. Some cope better than others. Whether this is through attending a support group or going to therapy or actually having good family and friends to support us, it's important to have someone or something. And that even includes God. I don't believe in God, but I do not ever knock those who have faith. Sometimes, though, none of that is enough. Some people simply are ill equipped to deal with life, and a special needs kid may be the thing that sends them over the edge and into the chasm.

What many of us need and seldom get is the support of that elusive village. Families are spread out. Friends work. People often have their own problems. Often we don't ask those with extra burdens how they are coping or if they need anything. Too many parents flounder about. They feel overwhelmed. Perhaps they are embarrassed to ask for help or don't know where to go to ask for help. Or they think they ought to suck it up and go it alone, even as they are going down for the third time. And taking their child with them. Solutions that may seem obvious to someone else is not necessarily obvious to a parent right in the middle of trying to figure out why this child came along and turned their lives upside down. Many times we know what the solutions are. We just don't always have what it takes to bring those solutions about.

If I cannot have a village, then I'd at least like to sometimes have an extra pair of hands. Or maybe someone with wings.