Perhaps no one is wrong to be right

When a new mother holds her child for the first time, it is a beautiful thing. It is also scary. Those dark eyes, just seeing light for the first time don’t immediately recognize the woman that tenderly carried them for 40 weeks. Small hands grasp for the air during involuntary swings of muscle twitches after all those weeks curled up. This new life is being held by a woman who will do her best to raise this child with poise, grace and dignity. To be honorable, strong, yet kind and gentle. Being a new mother is nothing shy of a miracle.

When I first began this blog, it was a few weeks after I had the above experience. After over 35 hours of labor, most of which was unmedicated, the doctor told me to push my first child into the world. I saw her dark hair and I was a renewed woman. I found strength inside me I knew nothing of before, and I, though a labor of love, delivered my first child. Before anyone could catch her, I reached down and pulled her to my chest where she let out hardy screams and cries. After Dave began to speak to her and we were wrapped up skin-to-skin, she settled into me.

Weeks later, sitting in Hasbro Children’s Hospital, after 2 days had already passed during an unrelated-to-dwarfism admittance, we learned that Addie had Achondroplasia. A skeletal survey had shown positive, but the geneticist drew blood to be sent to Johns Hopkins to be sure. As I sat in disbelief, I wondered if I was the right mom for this child. I had never been more than a few feet away from her in the 9 ½ weeks she had been in this world, and she was inside me for 38 weeks and 4 days prior to that. But, this baby seemed new to me. This baby could not be in a carrier, those really deep breaths that sometimes scared me were a sign of apnea- common to achon children, and all those milestone charts I’d printed out meant close to nothing.

I was scared.

The first time I picked her up out of her hospital bed, I looked into her eyes. She wasn’t dehydrated anymore- she was nursing better and sleeping more soundly, and her irises were becoming more and more blue and bright as the hours passed. She gave me a sideways grin- all drool-y and gummy. I put my forehead against her’s and cried. I sobbed. She let me. We connected those first hours after diagnoses, not with me comforting her, but she comforting me. When my eyes could cry no more, I began to research. The information I came across, though some scary, was not at all negative- sleep issues, hips/knees/ankles, spinal concerns, kyphosis, lordosis, flat feet, fluid in the ears/hearing loss, larger head- awareness of hydrocephalus. The list went on, but it was nothing that I could not handle. I began to research doctors, as well as personal blogs for more answers. I came across two famous LP actors, Peter Dinklage and Danny Woodburn– successful men (Peter is in one of our favorite series- Game of Thrones- and Danny is from Philly- so of course, he’s awesome). I learned about TV shows focusing on LP. As we do not have television, I often miss these things. And then I came across Rosie [O’Donnell] and Chelsea [Handler] talking about LP. I won’t say much about it, Google it if you want, except that while having a fear of the unknown is perfectly OK (it’s what makes us human), dehumanizing someone by speaking about them as though they are a deviant, both sexually and in society is a sad, sad thing. There were many comments made, and discussion about giving LP jobs out of sheer pity- but I had to stop watching the YouTube video that was tearing down a community that my daughter was now a part of.

I sat down in my chair-converted bed in Addie’s private hospital room and I started my first blog post. It was June 23, 2012. I called the few people I didn’t want to learn about Addie’s diagnosis online, and then, on June 25th I posted it at 11:59pm. A is For Adelaide and Achondroplasia.

The response to my first post was overwhelming. As we came home from the hospital and I researched LPA, I saw that we, too, were a part of the community. People were emailing me, messaging me and commenting on the blog. There was support, more support and questions answered. Information about doctors, car seats, adaptive items for the home, new charts and parental tips came flooding into my life. I was relieved that I was welcome into such an amazing group of parents, friends, family of LP, as well as a group in which medical specialists actively participate. Addie’s geneticist, in fact, is on the medical advising board for LPA.

I wasn’t scared anymore. I was, indeed, the mom for Addie.

Above is my long-winded explanation of how we got here. The story about how I came across the pickle jars in December of 2012 is infamous… at least in New England and Minnesota. Again, just Google it. I’m the “crazy pickle lady”. While I don’t object to the moniker, I like to think of myself as “the woman whose initial step into making a change was blown out of proportion by naysayers who are not affected by her cause at all.” But I guess that’s too long.

There was an abundance of negative comments on each article posted online, and a few people responded to them in kindness. There was not one article, in fact, with more positive to the negatives- from what I was told. I stopped reading them after 2 minutes and never went back. The radio shows I went on, both in the US and Canada had DJs that seemed to listen, and then mock me as soon as I was off air- as did their callers. NPR, I was told, did not do this- Addie was in surgery during the piece and I missed it. Sadly the segment didn’t make the website, so I cannot hear it now. Callers into the shows were negative and mean- attacking and insulting me personally, where as I never made an assault against anyone. There were emails sent to me through the blog about the “lawsuit” and “court system”. About my “tirade” and “company bashing”. I answer each with dignity and pride. You are more than welcome to read some of them. I will post them below.

There were also comments shared with me by teenagers who found me via Facebook and blog. They thanked me, admitting to reading the story with tears in their eyes. Children moving into a adulthood who have gotten “gag gifts” of these pickles and other items with the word. People who thought they were being funny, but were, in truth, mocking- looking to injure the psyche of someone with a genetic difference. Let me tell you, Reader: It worked. Over 25 high school-ers, and parents of a few middle school children emailed me. Some wished they had done something the first time their child was hurt. I choose to celebrate their paving the road for me. These parents and I have discussed how they were coming from a place of hurt and anger and were more likely to be reactive and not educate, but vengeful. The pickles don’t hurt our children- the people who misuse the word do. Because of this fact, I asked for a change. The word has been so misused, it’s now more commonly used as a slur rather than an adjective meaning “small”. These same parents have asked when they can shake my hand and thank me. I tell them: their words are thanks enough, and I hope to meet this summer. I am no leader, I am but a lone mom walking the same path thousands of other parents have walked before, looking to make what difference I can in an (obviously) unchanging, due to hate and fear, world.

I will tell you dear readers, I did this out of love for my child. I have always been more of an outspoken person. I was meant to be Addie’s mom so I could advocate for her, and teach her to do so for herself. There was never and will never be a lawsuit regarding pickles. While this change may “cost the company thousands”, so does the sensitivity training, paid for each year, that many choose to provide to their employees. I don’t have a lawyer, nor as a SAHM do I have the means to provide one. There was never a tirade or bashing- I did not call for a boycott, in fact, as someone mentioned in a comment, there is a picture in which you could see I had more than one jar of Cains’ Pickles. Yes, I do. I support them as a company- NOT because they are making a change, but because they opened their minds and hearts for a 3 minute video and educated themselves. I do not ask anyone to agree with me or think I am “right”. Having an open mind and being educated do not indicate that you are going to do what someone suggests, it simply means being open to new ideas. While I believe the m-word to be akin to other words that our society has deemed hateful and slanderous, I respect that others do not. While I respect your right to the opinion that the m-word is not derogatory, I do not necessarily respect you for having it. I made a video encouraging change and offering my support in the process. This company responded positively, and I am currently pursuing other companies and mediums that use the m-word. Please be aware that the FCC has been notified, as of 2009, that the m-word is considered derogatory and slanderous to the LP community.

As many have pointed out, this first step was to educate a condiment company. Though a waste of time to many, it is important to me as it affects my daughter and, thus, myself. Some have told me that they were injured in war and they choose to call themselves “cripple” to “own it” and not let the stares get them down. While that is all good and well, my daughter was not made different after she went to war as an adult. She does not yet have the coping skills these people have, nor will she make it through childhood or adulthood as an average person. She is, and always will be, different. Trust me, she owns it. She, however, is not required to “own” a word that is a slur. I do not expect many people to “get it”- I myself would not have understood just one year ago. I, however, would like to think I would not have made a personal attack on another person simply because I didn’t understand something. Or attack anyone, period. What posses a person to feel such hate? Whether I would have expressed  my support, I cannot say, but I certainly would not have offered up such comments like this one posted on the YouTube video I made for Cains:

Did that make you cringe? Yeah. Me too. But, as an attack on me, I didn’t stop comments. I got an email that said:

While I was shocked and saddened, this person was still attacking just me. And then, the last straw. I got an email alerting me to another comment. The reason I stopped comments on that video:

This was day 1. The same day that what was meant to be a feel-good article, was taken to a level I could not have imagined. What goes through the mind of a parent when they see this? I cannot tell you. My mind was blank. I got hot and cold at the same time. I wanted to make the world a better place and people were wishing harm on Addie. I disabled the comments and I stopped looking at my phone.

When the vibrating wouldn’t stop, I picked it up again. TheXtremeWRATH: “MIDGET PICKLES” and 3asi1y: “your kid looks like a midget” on different videos on YouTube came up as notices in my email. I disabled all comments on videos with Addie.

I read my girl her bedtime stories and we said our prayers. I put her down in her crib and she fell asleep. At 2:30am I was still awake- my heart was racing. I was scared that someone was going to break into my home and harm my child. People were making such vitriolic comments about a 10month old. I truly feared for her life. I crept into her room, lifted her from her crib and brought her in with us. I fell into a pattern of wakeful sleep for 3 hours that night.

Finally, the next morning, emails came flooding in from supporters. Emails and blog comments from strangers who have NO connection to dwarfism, and so many more from people who do have a connection- whether it is a family member, friend or themselves. These people chose to not fight “trolls” on Facebook or another website, but to contact me personally and thank me, support me, or to tell me that while they do not feel the same way- they encourage me to do what I think is right an ignore what they see as personal attacks. Parents, friends, strangers who are inspired to make a difference for what they believe in- things that have nothing to do with dwarfism, and everything to do with being proactive. People have cited this story in conferences and meetings, not to hurt, but to encourage others to seek change. One person can make a difference.

Then there were the few who found me off of these article pages- where on most, I’ve never read one comment- and into my email account. Thankfully, I have a junk email address that I can respond from and so I did. I want you, Reader, to know that I stand by my motto. To not be reactive, but proactive and educate. I will not let someone hurl insults at my daughter. Adult bullying is sad enough, when someone wishes to bully or harm an infant, that’s a whole other psychological issue I am not qualified to respond to. All the people who have commented about my husband, please save it- you’re only embarrassing yourself.  We have been married since 2009. If you’ve ever met Dave, he is a quiet, reserved man who loves his family. He works 7 days a week and provides all the love and support we could ask for.

I have been told I am what is wrong with this country and to focus on important things, like the economy. Dave, a small business owner, now spends his weekdays in a position over 50 miles from home, and his weekends at his shop. Does he want to work 7 days a week? No. But, he has a wonderful job that he got as the economy was crashing down around us, and his business was no longer enough to support a wife and child. I focus on the economy so much, that I am often stressed and lose sleep about how we will have enough retirement, can we sell the house, how much college will be, will we be able to have another baby, or what adaptive items Addie will need that we might not be able to afford, like an adjustable chair that seems like a wonderful piece of furniture for her… at $400 a pop. While there are other items we can get instead, you understand my point. I worry. I do not think the naysayers to my actions are what’s wrong with this country, I do not think I am either… but between some civil comments and some not, I think this will give you a better view- a more personal insight- as to what change I meant to bring, and what was perceived. There were many comments on the blog, specifically on the About page, as well as under multiple posts, including Let’s Change the Worldand The Dust Will Not Settle– you’re welcome to read them and my replies. I am including only the least offensive private messages, as I just bombarded you with the evils of YouTube vernacular. In light of this, actor Danny Woodburn made the remark:

Understanding the origins of words and how they have been used to dehumanize often escapes those that use the word for what they think are other reasons, other identifiers. Acknowledging under represented minorities has historically been a hard won change. I commend her for doing this through open communication and commend Gedney for their understanding. Anyone who can’t see or refuses to see what this means comes from too casual an understanding of this kind of societal indifference.

What scares me are the adults who post and think that I should be “ridiculed and more”. Or the people who think I compared Addie to pickles. What were they reading? There are people who think that the m-word on a jar doesn’t hurt anyone, but from the people who are hurt, I hear different. Just as many people were not hurt by a certain candy name in the 50’s and 60’s, other people were. Finally, please know that the people who want to “sue me” for using the song on the Cains’ YouTube video… I created the video using Animoto’s library, which gives me the rights. Please Remain Calm and Stop Being So Legal-Jargon Driven. I did not “take on” any company. I’m not sure why the attacks, but please read ahead. I thank you, once again, for all of your support (not necessarily agreement).

Lastly, I ask… just because I do not agree with you, does that make you wrong? Didn’t think so…

Thank you for reading.

There are so many to choose from, but two these seemed to be the most gentle. Thank you for sticking with me through this. I will be running a series about other changes and bullying in the next few months. Together, we can make a difference for all children.