By Katya Skiba
...Achondroplasia. Dwarfism. These are the words that came into common use in our family suddenly and forever. From the very beginning, I knew I would share our story.
At the end of my pregnancy, during the last scheduled ultrasound, the doctor got confused. As she was looking at the screen, her face was getting more and more worried. Then she took a book from the shelf and started to look carefully into fetal size charts. The baby’s body measurements didn’t match.
They suspected Alisa had a rare genetic condition, a skeletal dysplasia. We had not seen it coming. Neither had the doctors. Here we were: two healthy parents, a smooth pregnancy, and a spontaneous gene mutation.
I’m not going to get into detail about the whole “investigation”. Eventually, having done a bunch of ultrasounds in the hope that the growth delay was just a big mistake, we figured that we’d better get ready to have a really little girl.
So the thrill and excitement got squeezed out by fear and awful pain. We desperately struggled not to build our hopes up, but we did. This struggle never stopped during the last two months. The doctors turned out to be right.
The good news is that, theoretically, this condition does not threaten Alisa’s health and life. There is a visual aspect, of course: short legs and arms, big head, and really low stature. Besides, her motor milestones lag by several months.
However, there is a range of possible complications, such as sleep apnea, ear infections or obesity. Btw, in January, Alisa had spinal stenosis decompressive surgery which I’m happy was diagnosed early (Alisa is 11 months old).
Anyway, we will keep monitoring her health with special attention so that we don’t miss anything and either prevent complications or mitigate their impact. Always keeping our fingers on the pulse is something we should get used to.
I could go on and on about how devastated I was back then. You know all these denial-anger-bargaining-depression-acceptance memes? Now I really know what it’s all about.
It’s like you are suddenly pushed into another reality by a violent gust of wind and get knocked down to the ground.
You wish you could wake up. You don’t understand. You feel helpless. You’re angry. With whom? Just with the life and how things suddenly went terribly wrong. With the doctors who are pretty harsh when delivering the news to you. And every single word would resonate through your body with a ferocious wave of fear, relentlessly destroying all the amazing things that you have felt just recently. You keep asking the universe a million questions but there are no answers.
The agonizing feeling that this is so unfair. But then again, what’s exactly unfair? No one deserves that. But it happens. We are not unique.
I don’t believe that people are destined to face certain challenges because they did or didn’t do this. Neither do I believe that the universe only throws us challenges that we can actually handle. It just happened. An inborn condition is a lottery ticket. However, this does not change the fact that we can gain A LOT here. As long as we have won this ticket, I want to make it a lucky one.
Besides, I do realize that what happened to us is no disaster. There are much more challenging things in life, health-wise. I’ve been familiar with the issue for many years. I know what many kids, adults, and their families around the world have to go through every single day. I admire their courage and commitment. They are my heroes. A role model.
However, at some point, I figured that I didn’t feel comfortable finding my relief in that things were going worse with someone else. It’s not exactly ethical and, besides, sometimes it doesn’t help anyway. Because when this kind of thing happens to you, you don’t compare your situation to how much more awful it could be. You think about where you used to be and where you are now. It’s “before vs. after” that hurts at that moment. And that “before” was about joy and happy images of parenting. Sorry, but there was no place for the words “abnormality”, “disorder” or “inborn condition” in those dreams.
Given that, such an “after” came as a huge shock that I was not ready for. I had always thought that my knowing people with disabilities and my volunteering experience would make me ready for such a turn of events. Well, I was wrong. Somewhere deep inside we always hope that this kind of experiences will pass us by. That’s probably the right way to go.
And yet our parenting experience is filled with joy and happiness all the same. It’s just that there are more challenges.
The main difficulties are going to be the need to monitor Alisa’s health really closely, learning to do some daily tasks where her height and short legs or arms might get in her way, as well as teaching her to love herself and not care about being different. That’s the way we see it now. I’m sure there is more. There is definitely a lot that we have no idea about yet.
Concerning height-related difficulties, they are quite specific and clear, more or less. I also really hope that most of them are fixable.
When it comes to looking different though, this issue is probably much harder to handle. But this is all about adults’ eclectic attitudes and paradigms. Do kids care? No. However, they adopt behavior patterns of the adults. And this is exactly the message I’m trying to deliver here.
It depends on us, you and me, what society our kids will be growing up in. It’s up to us to shape a sane, conscious, and thinking society. Where everyone feels comfortable. Where there is no fear to be different. Because it’s not so much the circumstances themselves that scare us. It’s rather the how-would-the-others-react stuff. Well, this fear shouldn’t exist in the first place.
Please, talk to your kids about these issues. Talk to adults, too. About how people are different. About how many of them turn out to be different when they are born. About how many of them choose to be different. It’ll make it easier for all of us, you know. Because let’s face it: you don’t need to have an inborn genetic condition or unusual looks to be bullied, disregarded, or isolated.
Let’s make the world around more open-minded. Let’s encourage the world where there are no sidelong glances and embarrassment at the sight of unusual people and no hasty attempts to change the subject when these issues arise in a conversation. Then, in the future, we won’t get paralyzed with fear at the very thought that our kids could fail to fit into other people’s picture of what is right. No matter whether it’s how one should look, think, or react.
This journey has made me learn and realize a lot.
I realized that optimism is not a gift. It’s hard work. It’s not so much of blind faith that everything is going to be okay, but rather a fighting spirit.
I’m honing the skill not to compare my life to anyone else’s.
I realized (again) that my family and friends are the most important thing in my life. Thanks a lot to everyone who showed their support. I appreciate it so much. I couldn’t be more thankful to my husband who took everything rationally and philosophically from the very beginning. And no matter how hard it was for him too, my every outburst of discouragement would be encountered by yet another joke.
Humor, irony, and SELF-irony. Those are very strong antidotes. There are moments when our jokes might seem a little harsh. But we have the right to joke this way because we know the backstage of these jokes.
…I’m not going to give a big speech and ham it up about how there is always light after the darkness. As much as I am an optimist, I’m not sure that’s always the case. But that was the case for us. Yes, this light was not about finding out that the diagnosis was a mistake. It’s our dear daughter whose laughter is worth all the pain that we’ve had to go through 🖤. It’s a new chance to see what amazing people we’re surrounded by. To get to know yourself. To see that you’re stronger than you think. That tears and despair are not signs of weakness but a fight.
And of course, it’s a new inspiration to make a change for a better world.
It will take time to completely accept what happened to us. I would be lying if I said that I’m already there. But that’s exactly what life is about. Change and turbulence. There are no even emotions.
It took me six months to write this post. Even though I feel okay opening up to people, there is a lot more personal here than I normally feel comfortable sharing. But I know that what I do is important. And now that I’ve finally clicked the Publish button, I feel relieved.
You know, being sympathetic, indifferent, and striving to make a change is what I think has always defined me as a person and what I’ve always appreciated most in other people. Now, that I have Alisa, my values have only got stronger.
I want more people like us to share their stories. We need to stop taking on this overwhelming air of tragedy and mourning when we hear about disabilities. It’s this awkward silence that makes us feel something odd has happened to us and make it harder to embrace the reality. People's all too sympathetic looks. Their dread to ask any questions. That is why I want to talk about it and I will.
You can find Katya and Alisa on Instagram @skibonchikkk.