So I read it. All of it. Cover to cover.
And it changed my life.
I don’t think my views are wrong about not wanting Addie to go through limb lengthening, but they are my own. They are not something I even feel like sharing anymore.
After reading Dwarf, by Tiffanie DiDonato, I can tell you that her parents had differing styles, she has a great relationship with both parents, but, again, different. And, I can tell you, I envy her.
After reading the beginning, I was appalled. Granted, I was learning. For starters, Tiffanie does not have achondroplasia. Where at (almost) two, Addie can reach to almost the top of her head, and certainly her ears, Tiffanie could not. Is it crucial to reach your ears? Go a WHOLE day not touching your ears (I didn’t last 20 minutes before my glasses slid down my nose as I read and I started to lighten up). Anyhow, Tiffanie has diastrophic dysplasia. It’s a whole different ballgame than what I know. It comes with other issues, joint and development. I’ve mentioned before, dwarfism is not a diagnosis, it’s an umbrella term.
Do not think that one person is like another because they are an LP. When you assume, you make… well, you know the saying.
So how did Dwarf change my life?
After judging Tiffanie’s mother to the core, wondering what her motives were, crying page after page as she described her father’s reluctance to the surgeries, I stopped reading for a few days. In those days, a local business to Rhode Island, a business I love and support, was lambasted for a meme they posted supporting all mothers. I reflected on this. I took it all in. I remembered the awful things people have said (and still do) to me about fighting to educate and eradicate the m-word from common vernacular. I remember the thought: You don’t know me. You don’t know my situation.
And here I was, trying to justify my judgements about another mother.
There is no justification. Tiffanie is not my child. She is my peer. She is a fellow New Englander (I’m still a Philly girl at heart). This argument of who is right here? It’s the mother of the child. She’s the parent. Tiffanie asked for this, with the education of her mother. As I’ve said a million times, I am the best parent for Adelaide. That’s fact. So, we move on.
My judgment ended. I’m just a mom, I’m not a god.
Yes, this book changed my life.
Upon reading Dwarf you may encourage yourself to put the book down and seethe, or cringe, or say Oh I would never, but that is (most likely) because you never had to. The person in Tiffanie’s life I most related to? Mike. Read the book. Ask me questions about my life, and why I would relate to Mike, but know that everyone makes their own decisions and sometimes we won’t know why, we won’t be able to relate, but we are no one to judge. We are all but mere mortals.
I broke in two after reading about Tiffanie’s father driving an hour and a half each way to her college to clear off her car. I sobbed. Addie cradled my head in her arms and kissed my hair. She called for Dave, who didn’t hear her, so she just sat with me. She is two. She is stronger and wiser than I give her credit for. I turned my head into my blanket and cried for my own Dad. My first love. My best friend. I cried for the past 16 years I’ve missed his making everything perfect. I missed his protection. I missed him at every school event, graduations. I missed him at my wedding. I missed him holding his granddaughter. I grabbed Addie’s little body and pulled it into my own. I told her how lucky she was to have a Daddy that would be there for her…
And I stopped.
I kissed her face and she smiled at me. I smiled back and read on. I finished the memoir about 15 minutes later.
And finally, I took a deep breath.
I remembered the letter I got telling me I was an idiot and dumb and yadda, yadda, yadda… sent by some obvious genius. I say obvious because the grammar was incorrect. I remember people launching hate at me from news websites, via Facebook, the blog. It seemed never ending, and after a while, it stopped stinging, because unless you live my life, you don’t judge my life.
End. Of. Story.
Reading Dwarf has given me the opportunity to learn a different point of view, and like many before me, I choose to educate myself more. While I don’t believe the adaptive aspect is necessary for Addie, we are not there yet. The conversations we have about limb lengthening are rare. Right now, we are teaching her how to use step stools safely… and she loves that independence. She’s getting in the car on her own, getting on the bed by herself and able to reach all the things a two year old needs to. At some point using a step-stool will wane on her. She will become an angst-y teen. Perhaps she will not love her body, but I always will. We all have our cross to bear, and while I will never understand dwarfism from the perspective of an LP, I hope I know enough to support Addie and help her adapt the world, educate, advocate for more dwarfism-specific ADA laws, and not feel that she must adapt her body.
Dwarf is a must-read for everyone. Learn something new. Learn that what you don’t agree with isn’t wrong, just different. Learn what a person goes through when they give up years of an average experience for one of an extreme dependence and loneliness to gain a new independence and achieve their dream. Thanks for the great read, Tiff.