Virginia Speer

@virginia-speer | contributor
Virginia’s daughter, Bella, was born at 32 weeks with Cornelia de Lange syndrome, a rare genetic syndrome that affects her arms, hearing, growth, development and feeding. She’s now a happy 18-month-old and learning something new every day.  
Virginia Speer

Why We Weighed Our Baby in Grams During Her First 18 Months

When you’re pregnant, you have amazing dreams about your roly-poly baby with cute baby fat rolls and chubby cheeks. But when reality sets in, those dreams change. Bella was born tiny. In fact, she was one of the smallest babies on the neonatal intensive care unit floor. When you’re in the NICU and have a baby who is growing unbelievably slowly, ounces can seem like mountains. So you hope for grams. That was the unit of measurement we used to weigh Bella during the first 18 months of her life. A gram is about the weight of a paper clip. We were ecstatic when Bella gained 10 grams in a week, while other parents got upset if their baby didn’t gain a pound in a month. Trips to the pediatrician were uncomfortable and odd. Other moms sitting there got upset because they thought their 3-month-old babies seemed small at 12 pounds. They would me ask how many weeks my baby was. I told them Bella was 9 months old and weighed 6 pounds. The looks I would get made me laugh. You know you’re in a very special group when you need to continue to weigh your baby in grams after you leave the NICU. There aren’t many of us. Most people use ounces and pounds before they leave the NICU. Staying in grams doesn’t mean anything bad, it just means you get to keep that little baby a bit longer. No one should feel singled out for it. When we decided at 18 months to start using ounces and pounds to weigh Bella, it seemed weird. Learning to convert became a new skill for us. Bella has reached a point now where until she fluctuates within a few ounces most of the time. This is fine with us and her doctors. She is healthy and proportional for her size, so everyone is happy. A version of this post originally appeared on Our Tiny Fighter. The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Virginia Speer

Cornelia de Lange Syndrome: When People Say 'I'm So Sorry'

This post is meant to give the bare-bones raw truth for what myself and my husband, as well many other parents to differently-abled children, think and feel. I hope everyone can understand. When we go out in public with a child with special needs, we meet many people. Seven out of 10 will address us with something like, “Oh she is so cute,” “How adorable,” or “She’s doing so well and looks great.” These people are polite and tend to show a genuine concern. Two out of 10 people are the rude and disrespectful ones. Their comments go more like, “What is it?” “What’s wrong with it?” or even “Why did you have it?” These are the ones we can completely do without. We’ve learned to just say, “God bless” and walk away. The last type of person is the “I’m sorry” person — the one who walks up to ask how old our baby is and then immediately says, “Oh, I’m so sorry.” This is the comment that actually still hurts. These people feel sorry for us; they pity us. Why? Telling me you’re sorry is like a slap in the face. You’re sorry because I was given a gift, a special loving baby who I got to keep after I begged God to let us keep her. You’re sorry because she doesn’t have 10 fingers or two whole arms. But technology today can make bio arms better than anything we’ve ever seen. You say sorry because she’s small, but we get a ton of use out of clothes, and we get to keep our baby smaller longer, like every one always wants. You say sorry because you assume she’s sickly and dying. News flash! Not every human who looks different is terminal. Yes, you don’t know our story, but it hurts when someone assumes we’re burdened with this sick kid, that we cant enjoy life because of our baby. We love her! We don’t see her as a burden; she’s a joy to have. We go places and do things with her and have the time of our lives dong it. She’s a happy, healthy little girl who you choose to mourn when she’s sitting right in front of you. When we first began hearing “I’m sorry,” we’d smile and say thank you and then move on, but after so many times, you realize you cant just let it go. Saying, “No, don’t tell me you’re sorry. She’s happy, healthy and growing,” has become a first reaction. Sometimes I’ll even ask a person, “Why?” to see what their response is. Normally, they stumble or even come right out and say, “Well you daughter is like that, and it must be so hard.” I always tell them, “No harder than it is for your kids.” My daughter is a kid. No child is perfect. Every baby and child has flaws — colic, purple crying, not wanting to sleep, mood swings, not wanting to eat, wanting to eat too much, acting out, having social delays, etc. So why should my daughter be looked at differently than anyone else’s child just because she is unique? I know people will always look at her differently because of her arms and size, but why look at her with pity and sadness? How would you feel if someone walked up to you in public, put their hand on you shoulder and said “Oh, I’m so sorry.” You’d be left feeling lost and wondering, “Why? Was it something I said? Is it something I’m wearing? Did someone tell them something about me?” That’s how we feel when this happens. You assume something about my daughter before you even know her name. So please, the next time you see a unique, special, differently abled, atypical, exceptional, adorable, unconventional and original baby, child or adult, do not say you’re sorry. Ask a question if you want to know something, but don’t assume their life is unfulfilled. You don’t know them. Thank you. This post originally appeared on Our Tiny Fighter. Sign up for what we hope will be your favorite thing to read at night .

Virginia Speer

The Moment That Showed Me My Daughter's True Strength

I have to admit that I used to feel pity when I saw someone who was visibly disabled. Then I found out that my own daughter was going to be born without fully formed arms. I went down the guilt road, believing that it was somehow all my fault. Then when she was born, we found out that not only were her arms different, but that she also has a rare genetic disorder that causes delayed development. She would be extremely small for her size. I continued down the path of feeling sorry for myself and guilty for way too long. Then after all of the struggles, the tears, the sleepless nights, and the wondering what her future could really be, she smiled at me. It took six months for her to smile, but something so simple held so much promise. Now I had loved her since we found out about her, do not get the wrong idea about that! But a small tiny smile made my whole world change again. That was when I knew she didn’t give up on me, so I could never give up on her. She made me strong and I was not going to let her down. I was not going to give up on her and I was not going to let her give up on herself. We were told by doctors that “normal” for her would be sitting up by age 2 or 3, and that if she ever did stand or walk, it would be years after that. Well we decided that their normal was not an option. She was stronger than they gave her credit for and, well, a syndrome is more of an overview, not a blueprint of how each child must act and grow. After many days with PT, OT, and ST, she has thrived. Sitting up alone on her first birthday and standing with minimal assistance shortly after. Now at a little over a year and half old, we are working on standing alone and even taking steps, with a little balance assistance. She is still tiny, mind you: 10 pounds at 21 months and only 22 inches tall. She has learned to do things her way and with minimal help from us, and she plays with her toys and knows how to get your attention very quickly. Now I get irritated when people tell me they are sorry or feel bad for me. For WHAT?? You feel bad because I have an amazing, one-of-a-kind angel I get to play with and snuggle with every day? I feel sorry for all of them because they don’t! Instead of feeling guilty, I feel that I was blessed to be chosen to be her mommy. I was given my personal angel to hold and keep with me. This is my little love, my Bella Marie! Want to end the stigma around disability? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

Virginia Speer

What I Wish I'd Known When My Baby Was Born the Size of My Hand

If I had the opportunity to turn back time, to give myself hope when I didn’t think there was any left, I’d do it in the blink of an eye. I’d stop the clock right before the doctors took away our tiny, different bundle and tell myself she’s OK. Yes, she’s small for 32 weeks — 1 pound, 12 ounces is unreal for that age — but she’s breathing on her own, and even though you can’t hear her, she’s crying. I would hug myself and keep saying, “Just a bump in the road.” But mostly I’d sit down with myself and have a talk about her syndrome. Cornelia de Lange syndrome. Yes, it’s rare, and yes, there are many stories we’ve found and pictures that tell sad and difficult stories. That doesn’t have to be us. We know she can’t hear us, but she looks at us, and she snuggles when we hold her close. I would tell myself, “Don’t take for granted when she eats. G-Tube surgery at 9 months for a 5-pound baby is terrifying, but we make it through. Hearing aides and a prosthetic arm will give her opportunities to do more. Don’t let doctors and other parents get in your head; she will do everything you help and push her to do. She will love you no matter what. She doesn’t feel that her being different is your fault. She’s just a happy baby. You will learn to celebrate milestones other parents take for granted –sitting up alone, lifting her head during tummy time, even every small sound she makes. Your normal will never be the same, and so many people will not understand. But that little one will be your whole world.” I’d make sure I understood that my daughter being born early, severely small with arm anomalies, deaf, and with a rare genetic syndrome was not a punishment. It’s an amazing adventure with a one-of-kind handmade personal angel. I’d let myself know that things can change and doctors aren’t always correct. A determined little girl will do whatever she wants, regardless of what people say she can’t do. She’s still tiny — 18 months old and only 9 pounds — but she’s sitting up alone, trying to stand alone, taking steps with help, babbling like crazy. She has improved hearing in one ear. I would want myself to know that a diagnosis is just words — words that don’t and will not define who my daughter is and will be. For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .