Update on the "R" Word

Thanks to M at The Maybe Baby (Babies), I came upon some information about removing the "R" word. It's called "Rosa's Law," and it PASSED.

Professionals and laypeople will be using "intellectual disability" instead of "mentally retarded" in school and government-related business. You can bet that I'll continue trying to spread the word. In Caitlin's memory.

Words

Names hurt
Labels break the spirit
Strike the heart like sticks and stones

Dare deny this truth with silence
Find it affirmed with words

Words can heal

Words matter

If I Could

I would personally invite every person on this planet to stop using the "R" word as a punch-line. Next time it's about to escape your lips, use your own name---that's what it feels like to be berated for just being you. There are plenty of other words; get a thesaurus. ARGggggggg.

Here's what the National Down Syndrome Society says:
Use of the "R" Word
NDSS uses and encourages the use of person first language (i.e. 'a child with Down syndrome'). NDSS exclusively uses and encourages the use of the socially acceptable term "intellectual disability."
NDSS strongly condemns the use of the word "retarded" in any derogatory or inappropriate context. People with disabilities, like all people, deserve to be treated as valued citizens and not referred to in a hurtful manner for any purpose. Using the 'R word' is hurtful and suggests that people with disabilities are not competent. Negative and inaccurate public perceptions are the greatest barriers the National Down Syndrome Society faces in achieving acceptance and inclusion of people with Down syndrome and other cognitive disabilities.

Cello Stories

An update on my new music learning endeavors. The cello rocks! I play three scales and a rendition of "Rueben, Rueben," that would make one weep. Ha! I wanted to share how energizing it is for my mind. The synapses must be firing in ways I can't imagine; after practicing for an hour, I went back to WORK---writing an article. That's right instead of being too tired, I was energized. Making music (not just listening)---that's the key. [Pun intended!]

Here's something else lovely, when I look down at my bow hand I see a blue and yellow "buddy walk" bracelet with Caitlin's name on it and it makes me smile inside. I wish she could hear me play the cello.

"Miss you baby girl. I'm working on your songs."

Moment Among Light bulbs & Plungers

I walk through the store, getting groceries. We've been living on take out and bagels and coffee and Dun.kin donuts, and so I must buy milk. I see a child, likely older than the four-feet might suggest who pushes a cart with Daddy beside and mom behind. And the child has DS and I can't stop staring and I realize that Dad has caught me and has misunderstood. People don't like to see others stare at their children who have special needs, and he gave me a look that I would describe as "protective."

"Hello," I say and smile with the tears waiting in the wings, and I pause and make eye contact.

He softened and and replied, "Hahwah---ya." That's the way they say it here in this part of New England.

"Good, thanks."

I pass the mother and smile at her as though she knows me and she returns the expression.

Turning into the very next aisle the tears make their entrance and I'm so pissed and jealous and sad and can't afford to lose it in the grocery store, not after two years. I'm supposed to be stronger now. Healed. Carrying the load. I stand there thankful that others don't need the light bulbs on the left or the plungers on the right of the aisle; they all are buying milk. I can have my grief moment staring the nightlight size bulbs.

They have pink and blue ones.

I struggle to cry without sobbing sounds, but I hear a squeak behind me. I release my hand from holding my now sweating forehead and turn away from fake study of the light bulbs and push the cart, though here they say it like this "carriage," and that feels more crappy.

That Love is a Verb--That's What's Most Important

This may surprise some, but this is another statement that no longer rings true for me.

"I know that the only important thing is whether or not the baby is born healthy."

Here's what I know. That's not the most important thing, either. Because when your child isn't born healthy, as mine was not, the most important thing is that you become a mother and that you engage in love as the verb it is, in all it's messy and scary and difficult and powerful and beautiful ways. Most parents hope for health above all, though some must come to an understanding that health cannot be the most important thing--especially when your child isn't born with health.

Death Certificate Arrives

We received her death certificate in the mail. It's printed on dark blue parchment paper with the official watermark. When you hold the heavy paper to the light, the watermark brings pink, salmon, and even red colors to the paper. I didn't realize that even the look and feel of the paper would reflect the finality of her death and frailness of her life.

I read every bit of information as though I might discover something new about my daughter. I didn't. With her full name spelled correctly, the document of vital records confirmed each diagnosis from her Trisomy 21 and heart defect to the bowel perforation and sepsis that caused her death. Also documented is the exact number of days she lived, the number of hours it took for her die from the perforation, and the exact time of death.

Wishing I would weep, I folded the document carefully into it's neat trifold and placed it back in the envelope. I sat quietly waiting to fold with grief the way I did each moment, then hour, then day, month, and year after she died. The pain wasn't there this moment, only a dull acceptance. I sigh. I wish it were different, but her Certificate of Vital Records confirms that it is not. My heart bears the watermark of her life. If you could unfold me and hold me up to the light you would see the evidence of Caitlin's presence. She shines through in pink, salmon, and red hues.

I need only wait, and the wave of grief will crush me when it arrives, but that will not happen today.

Remembering Her First Kick

I took this leave of absence from e-life to check in with real life. Part of the checking in was work-related. I attended a conference, a conference I attended with DH two years ago when I was pregnant with Caitlin. A conference which was also the time and the place where I first felt her kick. She didn't have a name then, but she made her presence known. It was bittersweet for me, because we had recently received the diagnosis that our child had DS (Down Syndrome).

I was a mother who had hoped for a "healthy child" and not a child with DS. Do you know the shame in that? My strength and my weakness is that I work to be honest with my feelings and look squarely at my thinking. I recognize that other parents had different reactions, and I won't invalidate those feelings, but I also will not invalidate my own feelings. I am not a bad person because I was overcome with fear--turns out I'm normal. What probably was less normal, was that I acknowledged how I was feeling. And I was incapable of hiding it. So, when others judged me, they did so with some evidence. It's a painful road.

When Caitlin was born, I was overwhelmed by loving. Not love as a noun, but love as a verb, the powerful act of loving. That un-named force that bursts out of you. I was still very frightened of DS, but this loving force made me believe that I could by sheer will fix anything, and protect against anything. Me and DH became focused on helping her be happy and keeping her healthy. But, that was not to be. She died.

The physical and emotional memory of Caitlin's first kick is another step forward in this grief journey. A step forward by pausing to ruminate over the past. I sat on benches and stared a trees and birds. I surrendered to the desire to return to the past, when she was alive and there was still hope. Hope for redemption for fearing her DS. Hope for watching her grow and celebrating her successes. And simply celebrating her. Hope for an active role as a mother. Hope for--as DH said so many times "to bring her home and find out who she is."

I opened my mind and my heart to revisiting the past, and making peace with my feelings. I was supposed to be reflecting on ways to improve my profession, but I was in this place where she kicked, and I felt

Joy

and

Sadness

One would probably prefer a romantic view, but every parent desires a healthy baby, and so joy and sadness were siblings in that first kick. One might imagine that any baby is enough, and I'm here to tell you that that is mostly true. It's also true that there is immense and seemingly insurmountable sadness that a parent feels as the dream of raising a child gives way to fear. Most parents experience grief with the birth of a child with special needs; grief for the life they hoped for their child to have, in effect, grief for the child they thought they were having. It's normal, but their family and friends are the last to hear of this expression of grief. Why? Because it's not acceptable. A parents' normal, expected grief, is misinterpreted as a lack of the ability to love. It's not true.

So, the parents suffer in silence with questions. Normal questions and reasonable fears. Will my child be able to take care of herself in adulthood? Will others treat her well? With love? With disdain? Will I be enough for my child? When you have a healthy child you will likely have the luxury of saying "goodbye" in death knowing you did the best you could. And you trust, that they will take with them what you took from your parents. You were OK, and so shall they be OK. When you have a child who is mentally retarded, you fear the unknown. You can trust in God, but there is plenty of evidence that others will mistreat or not know how to love your child. I can't go on. It's too painful. (If you are feeling the need to bible-verse me here, please refrain. It will hurt more than heal. Thank you.)

I breathed differently for several months, since the sensation of her first kick. With each inhale, I felt hope for the life I carried, and with each exhale, I felt hopelessness for the care for her life that I could not control. I regret those prenatal tests--the tests everyone spouts are so important. Tests that help parents make decisions for their children's future. I had no idea what few decisions I would have the privilege to make. She died.

The work conference was a time warp for me. I don't remember the words of wisdom shared by my peers in their presentations of research, because I was in this place where Caitlin was alive and not knowing how it would turn out. And I was wishing, desperately wising that I still didn't know how it would all turn out.

I miss you baby girl. I miss loving you in life. I am forever your mother, and I miss you. I'm sorry my old eggs gave you DS. If I could change it, I would, but I am powerless. And that is the worst truth ever, to know that as a parent, I could not fix it. I am powerless.

"Mildly Retarded" is Not a Punch Line

This true story goes under the category of "Oh, Scheeez." I've been off the blogosphere for several days while attending an education conference. I attended a terrific session where the presenter was upbeat, funny, and passionate about his/her subject. I'm smiling and laughing with the rest of the group when something in the system is that is not working and the punch line to the clinician's description was "And that's just mildly retarded." The group of 100+ participants all laughed. I felt like I had been stabbed. My smile was gone. My eyes began to sting, and I was in a panic. I thought about leaving, but something kept me glued to my seat. My body began to warm and then burn with anger. The tears subsided, and instead of continuing to take notes, I began to write the clinician a letter. Here is that letter exactly as I wrote it with brackets for explaining my thoughts more clearly here:

Dear [Name],

As the mother of a child with Down Syndrome, I'm asking you to re-think using "mildly retarded" as a joke line. This was so painful to hear a group laugh [around me], although, not directly about the use of the cognitive challenges of those with DS [it still hurt]. I can hear you are a passionate and caring educator and you know the power of [your subject] for all children. Please, reconsider.

Because of that extra chromosome my daughter's heart and digestive system were also retarded physically. These challenges contributed to her death at 11 weeks. I recognize this note is from a bereaved mother and perhaps some believe I should understand the ease some use this word for a smile. However, I must honor my daughter and voice my concern. Thank you, for considering my plea.

I signed it and spent much time sitting and staring with feigned interest as I contemplated whether I would deliver the letter. The pain had eased for me as I wrote the letter, but did I need to deliver it? I've been a presenter many times, and I would not have appreciated such a note because, I would not have had an opportunity to personally apologize. But, could I voice this objection and request in person? I knew I couldn't do it publicly; I didn't want to become someone others would gossip about through the rest of the days of the conference. "Were you there when that mother started crying and got so upset about something the presenter said?" "Who was she?" "What's her problem?" "I feel bad for her." That would have made it about me and not about educating someone who educates another to think carefully about the message he/she sends about individuals with special needs.

But, it was about me. It was about the real pain I felt when words were used that had the effect of dishonoring my baby and others with DS. It was about the need to advocate for sensitivity in this educational setting, after all, I hadn't paid a fee to see a stand-up comedian. I looked down at the session hand-outs and saw that one of the suggestions was to "be a risk-taker." And so I decided to take a risk.

Risk, being known as oversensitive.
Risk being known as "crazy bereaved."
Risk being a conversation topic.

Upon choosing vulnerability after the session, I patiently waited to talk with him/her. And I shook his/her hand and didn't let go. I pulled myself closer to him/her and said the words that I had concisely practiced throughout the rest of the session.

"[Name], I have a personal request. I'm wondering if you would reconsider using "mildly retarded" as a laugh line. I have a daughter with Down Syndrome and this was . . ."
He interrupts with a hug, "Oh, I'm so sorry. Of course. Of course."
But, I had more that I had rehearsed.
"Not only was she retarded, but she was physically retarded as well, and so her DS contributed to her death."
Another hug with an "I'm sorry" but this time I can see a true human connection.
"I'm taking a huge risk in asking you this, I know. But I think that it was because of the kind of person you have presented yourself in this session, that let me know that you might be receptive. After all, I am an advocate for Arts education, but I'm also an advocate for children with special needs. Thank you."
He hugs me again, and I leave.

There may be gossip. There may be talk. I hope there is. People ought to consider how easily they marginalize others with their words. People, especially educators ought to think carefully about how seemingly innocuous "jokes" can hurt and send a message to others that it's OK to use another's life challenges (such as mental retardation) to make themselves or others feel better through laughter. And people ought to make their voice heard when they feel the hurt when the ones they love are marginalized.

Now, some will read this story and want to know, "Who was that?" "Where did it happen?" I believe from the presenter's words and actions, that he/she was receptive and his/her response was sincere, and I was most appreciative. So, I ask that you don't go there--to focusing on details that blur the purpose of telling the story. Because, I'm certain that who and what is not what's important here, this is not a newspaper story. To my mind what's important is that we think about our words, and the intended and unintended messages we send to others.

25 Things About Me (Bereavement Version)

So, I keep seeing these Facebook "25 things about me" posts on Facebook, and I've been tagged a couple times, but I don't think I can participate, because all I can come up with belongs to the "Bereavement Version."

1. I am the mother of Caitlin Anne, who lives in heaven.
2. I am still not a member of the mommy's club, because others can't see the baby I parent.
3. I continue to struggle with the hope for parenting a living child.
4. I don't like it when people say "I know how you feel," when they didn't wait for me to finish my sentence to begin with.
5. The day after my daughter died, an acquaintance noticed my appearance and asked what was wrong. I told her and she replied, "I know how you feel, I'm dealing with our dog dying right now." True story.
6. I am still unable to walk by myself, because of my overwhelming fear that I may break down and melt into a puddle of grief and be rendered lifeless. I am afraid of the thoughts that will most surely flow through the meditative act of "one foot in front of the other" activity.
7. My DH loves me. I know he does, because he hugs me everyday, tells me he loves me everyday, makes me coffee, and looks at me---really looks at me and smiles at what he sees.
8. 11 is an important number for me, because it's the number of weeks Caitlin was alive. I have 11 pink silk flowers in my house and we released 11 pink and white balloons on the anniversary of her death.
9. I love babies. I'm not afraid of them, rather I'm drawn to them.
10. I don't love it when I hear pregnant moms happily complain about their discomfort int he later weeks of their pregnancy. I genuinely don't care about their complaints, but it triggers my own thought process of wishing and believing that if Caitlin had stayed safely inside for 7 more weeks as she was supposed to, she would still be here today.
11. I don't care that it makes people uncomfortable when I say, "Yes, I have a child. She lives in heaven." They asked a family question and I gave the truthful family answer. I'm not going to be silent about my child's life to avoid the moments of awkwardness they might feel.
12. I grieve everyday. I understand forever.
13. I'm not angry with God. I don't think He had anything to do with it.
14. When mothers say they would do anything to save their children. I believe them.
15. I sometimes enter "magic land" and think, "you know if people would just stop praying for winning a game and getting a A on a paper, bereaved mommy's prayers of BRING MY CHILD BACK TO LIFE, might get through to God."
16. Caitlin was a tiny beautiful child and she loved her songs and I loved singing to her. It was very hard to sing after she died.
17. I laugh louder than I did before Caitlin died. Not because I'm happier, but when I'm happy now that emotion is relation to the degree of sadness I feel now.
18. I have a white stand alone closet where all of Caitlin's toys, cloths, books, sympathy cards, photos, and memory box are kept. I call it Caitlin's closet.
19. My mother has a memory garden in her house for Caitlin.

20. My sister made a memory necklace with stones for Caitlin's mom and pink stones for Caitlin.

21. I want to learn to play the cello. When I do practice, I sit in the room where Caitlin's closet is and we keep the cello music in one of the closet drawers. I think Caitlin would like me to learn to play the cello, too.
22. We knew prenatally that Caitlin had Down Syndrome. I don't like to talk about it, because this diagnosis felt like a death sentence for what we wanted for our child, and then, tragically, it turned out to be so. She died because she was born prematurely (common for babies with DS), had a heart defect (common for babies with DS), and died from a perforated bowel (babies with DS are more likely to have developmental problems with the digestive tract).
23. Despite all my classical music training, I listen to country music. I love Martina McBride's lyric "love's the only house big enough for all the pain the world."
24. Caitlin's grave is a 10 minute drive from my house, and when I go there I feel traumatized by her death and elated by her life at the same time.
25. I'm tired.

Replies on the Inside

In the normal course of conversation-casual and professional, I encounter images and words that render me speechless. I am silenced and the replies remain inside me. In these cases, I choose the silence. I can't participate in some conversations. I won't reply when I know my words wouldn't be understood by one who is not a bereaved mother. I won't reply when my response is a macabre non sequitur. I won't reply when it's a grief response meant for me to work with alone.


1. "Well, for those of us who have children, we can't make it on that day as they don't have school and we have to be home."
My reply on the inside: I have a child. I have a child. But, I understand it would be odd to correct that statement and say, 'for those who have living children.' After all, who says that? Me, actually and other bereaved parents with no living children. Relationships and love don't die with the person, but apparently our language does fade.

2. Public display of the first baby picture--the ultra sound on electronic community with a "we can't wait."
My reply on the inside: Please, be cautious. Fear. I hope they get the storybook happy result. And "Please, don't be so public, it hurts." This reply is so selfish, I can only post for others who wear similar shoes. Images and sounds evoke memories, and I have worked for over a year to massage and make peace with many of my memories--ultra sounds that reflected our excitement, then ultra sounds showing birth defects and the doctors gentle descriptions of what those meant. I have had over a year and continue to reconcile that my "can't wait" is spirit.

3. "I want to finish my degree before I have children."
My reply on the inside: Don't wait too long. But, then I reflect on my fellow bereaved mothers much younger than I who said goodbye to their children at birth. There are a dozen standard ways non-bereaved and those with living children might respond, such as "well that's wise," and "good for you, you'll want to have lots of time to dedicate to your children." I remain silent with my knowing that there are no guarantees in life, and so I just nod with solemn hope.

4. "Her mother died, and now the couple has to find a way to take care of her 32 year old adult child with Down Syndrome."
My reply on the inside: Oh, my God, this life is impossible. Parents with children with special needs worry so much about dying before their children. And their best laid plans for their child's care beyond their death are left to the good will of others and not the fostered independence of the adult child. It means something different to leave a child who cannot care for him or herself without you. I wondered if this mother could have had a peaceful death. I wanted to die before Caitlin, and these words spoken to me made it painfully clear that this mother and I lost both battles. We would do anything for our children to live--but there is nothing we can do when they die and nothing we can do when we die. And we do what we can while we live.