When a headline begins with Teen Mom Leah gets more bad news about baby Ali, I feared the worst. Let’s be honest, it’s trash TV, but I cannot help my freakish addiction to these sad teenagers who can’t seem to get their stuff together. I am no Mother Theresa, but seriously ladies, what the heck is going on in your heads? And why, Netflix, did you decide to have this in your instant queue option?!
Watching episode after episode of Leah wondering why Ali is not keeping up with her sister breaks my heart. Her emotions seem tangible and I can taste her tears as my own. But reading these words below, makes me feel sad. Sad for me. I knew Addie had rapid head growth- I feared hydrocephalus. At one point, at Hasboro, I said to my husband: “It doesn’t matter what the doctors say, I’ve already diagnosed her as a hydrocephalic dwarf. So I’m prepared.” And I was. I embraced the news that she is not hydrocephalic like a champ, and I will forever be attempting to navigate life for her as an achondroplastic. I love my baby girl, and I will never let her suffer.
From the internet:
Enough with the mixed messages! First we have Corey contrasting a camouflage cap with a neon T-shirt, then Leah’s geneticist is trying to scare all our happy away. Just last week we were celebrating baby Ali’s “normal” test results and first time standing; tonight Leah was told her young daughter might actually suffer from skeletal dysplasia — or dwarfism. Whatever her condition turns out to be (and recent pictures show a very stark contrast between Ali and her twin sister’s development), we know their coal-mining fairy tale does not come true.
Can we start with the word suffer? Addie won’t ever dunk a basketball in the WNBA, but I hardly think that she’s going to, or is, suffering from achondroplasia. It’s a diagnosis. An explanation as to why she is so “wee”, but she is amazing. She is beautiful. She is Adelaide Eileen. My child is a dwarf, but she does not suffer. In fact, she thrives- AND, she lives to tell George all about it!
There are a ton of issues with the multiple brief accounts of “Leah and Ali”, but my main “beef” lies with the suffering, sadness, fear, and delayed commentary. Addie is not suffering, and neither are Dave nor myself. We have no sadness, and no fear. We are aware of some of the challenges she may face, but we do not fear them. And as far as delays go, Addie is on track with the AH (average height) children, so we have no worries there. But, should she fall behind, there is a chart specifically for HER!
This is my PSA: being a dwarf does not mean you suffer. There can be many scary situations ahead for Addie, but there are an infinite number of possibilities for all of the amazing experiences that lay ahead for her, too! Good luck to baby Ali- may you be little or may you be big, you don’t have to suffer for anything.
Thars why I bought Louba the shirt, “and though she be but little, she is fierce!” she’s going to move mountains one day.
you always amaze me, i want to be the first to buy your book. you have an amazing spirit and so will addie, she is very beautiful and i think she will be amazing like her mother.
This post echoes similar thoughts I’ve had recently regarding the word disability to describe skeletal dysplasias. Rather than write them out here, I’ll just give you a link to my post: http://lafamiliafig.blogspot.com/2012/07/more-thoughts-on-disability.html
Anne Spencer Ginn says
As mom to a 26-year old who happens to have achondroplasia, I applaude your testimony! The children who ‘suffer’ from dwarfism seem only to do so in the eyes of others who are not so fortunate as to be able to nurture a child with this dx. Despite many medical interventions, Beau has grown to be a strong, amazing young man. Was he delayed in reaching many of the usual childhood milestones? Of course! Being a preemie alone set him back 6 weeks developmentally and then the skeletal issues added another layer to the processes. But in the final analysis, Beau has attained young adulthood within the timeframe suggested by today’s societal mores, strengthened and sensitized to others with disabilities.
I encourage this family to take advantage of the many opportunities & resources available to people with skeletal displasias-from medical personnel skilled & knowledgeable about the 120+ forms of dwarfism to their local chapter of Little People of America. From these resources they will learn that, rather than a source of sadness or fear, these children can provide the same joys and frustrations as any average-sized child. Away from the ‘celebrity’ of reality t.v. this family might learn to embrace the normality of family life that comes with having children-and not BECAUSE of children.