The Elephant in the Room

Does Sebastian have the same genetic condition as Lola?

Many wonder, but most won’t ask and I get it, I probably wouldn’t ask either. You don’t want to offend us by inquiring, but you’re curious and I would be too. We knew it was a possibility even before Sebastian was conceived and it was a thought in the very back of my mind when I was pregnant. But as of right now, we have no reason to believe Sebastian was affected by the same genetic condition as Lola. Heck, we don’t even know what that genetic condition really is, but he seems to be typically developing. He is still quite young, but thinking back to when Lola was his age – well there were plenty of signs that something wasn’t quite right, the most obvious being her eyesight. We were just too new of parents and perhaps a bit naive, but we had our inclinations…and we were right all along.

I’m sitting here looking at old pictures of Lola, particularly pictures from when she was the same age as Sebastian, who is now two and a half months old. I’m sitting here and I’m dissecting – reminiscing as well – but mostly dissecting. It’s almost eerie how quickly I can pick up that she is rarely, if ever, looking at the camera. In almost every picture she is looking anywhere but in our direction.

Lola - 2 1/2 Months Old

Lola – 2 1/2 Months Old

This is an instance when hindsight is indeed 20/20. It is so blatantly obvious our daughter couldn’t see, it makes me feel horrible as a parent that I didn’t push harder to have someone listen to me. I knew, my God, I knew.

I'm inches away from her face and she still couldn't see me.

I’m inches away from her face and she still couldn’t see me.

I knew the moment I gave birth to her that something was wrong with her sight. I chalked it up to being a first time parent, but something was tugging at me – mother’s instinct perhaps – telling me something was wrong with her vision. Rob and I discussed it several times, but she responded to light so she wasn’t blind, sometimes she would make eye contact and respond to our silly faces so maybe she could see. We’d ask others and they’d tell us perhaps that sense hadn’t fully formed yet – “give it time“, they’d say. Either they truly had never been around a baby or they just didn’t want to state the obvious because it’s awfully clear to me how well babies can see right out of the gates.

When Sebastian was born, he looked me dead in the eye the second he was placed on my chest and that longing look to be near me has never ceased. He watches as I enter and leave the room, he stares at me as I change him, as I feed him, as I sing to him – he never stops looking at me. In truth, it has taken some getting used to as we never had that with Lola. I’ll be doing something and I can feel someone staring at me, I’ll look over and Sebastian is fixated on me. It’s bizarre and wonderful all at the same time. Lola is making great strides in her eye contact, but faces are complex due to her cortical visual impairment (CVI). They have always been a challenge for her which makes those rare moments when we get to see her beautiful eyes even more special.

 

A simultaneous look!

A simultaneous look!

 

Sebastian's eyes are always finding me.

Sebastian’s eyes are always finding me.

In looking back now, I have so many emotions regarding Lola and her vision. It saddens me to think how scared she must have been coming into the world. It was already frightening enough being born, but to be born without cortical sight must have been even scarier. Lola cried a lot in the early stages of her life. We thought it was because she was hungry since she didn’t nurse well, but I truly believe it was more than that – the world must have been overwhelming given her inability to understand it through her vision. I’m sitting here shaking my head because it is as plain as day now thinking back. It is our one regret in everything we’ve done with our daughter. We just wish we had known sooner.

Lola

Lola

Sebastian

Sebastian

Would it have changed our course of action if we had known about Lola’s vision impairment earlier on? Not necessarily. We could’ve started therapy sooner and perhaps it would have helped explain certain oddities. It would’ve confirmed our suspicions – made us not seem so irrational in thinking something was wrong with our kid. And perhaps it could have prepared us for what was to come (seizures, delays, etc). Maybe spared a few major emotional meltdowns by yours truly.

You know, it’s remarkable to watch Sebastian take in the world and all of its complexities so easily. My three-year-old daughter is just now beginning to understand her hands and yet my two month old son has already begun to figure them out. What Lola will work so hard to strive to comprehend, Sebastian will do it with ease simply because he can see. I won’t lie and say it’s easy to witness. I’m hoping and will be happy if Sebastian continues to develop normally. He has a big responsibility to take on – he has to help take care of his sister. But it saddens me that Lola’s achievements will never come easily. She will always have to work harder, she will always need extra help, she may, in fact, always live with us. But that’s OK. As a friend recently said, “This is Lola’s path” and she’s right. We don’t get to choose our paths, we just have to continue to walk them gracefully. Her path may be challenging, but it will be simple. It may have limitations, but there will be victories. It may not lead where most go, but conformity is overrated.

In truth, I’m thankful Lola came first. To us, Lola is our normal. Therapies, doctor appointments, medicine, orthotics – all of it is just routine to us. As overwhelming as it sounds, our normal is ridiculously joyous and constantly full of surprises. Lola defines when milestones should be met which makes each day an unexpected adventure. We threw away the books specifying should be’s a long time ago. And even though Sebastian will most likely meet many milestones on time – some probably even before Lola – the pressure is off. Sure we want him to thrive, but growing up isn’t a race. Will it matter Lola didn’t walk until she was three when she is 25 years old? Sure it’s a great story to tell, but it won’t define who she is. Lola’s first physical therapist, Moises, always said “It’s not about when she gets there, it’s about how she gets there.” This is a motto we’ve always lived by and it’s the truth.

I learned a long time ago not to compare kids abilities so I’m going to try my hardest not to do it with my own. Sure the mundane things like Sebastian spits up all of the time whereas Lola never did. Sebastian is a horrible sleeper whereas Lola always slept like a champ. Sebastian hates pacifiers and bottles whereas Lola took them with ease. Sebastian will hold on to you for dear life whereas Lola’s little hypotonic body will bend in your arms like a flimsy rubber band. The differences are vast yet their similarities are uncanny. They both love the water, they both love to be around people, when they are upset their lower lip can bend in ways I didn’t know possible and they both sleep with their mouths wide open giving the trail of drool a perfect place to trickle down.

Individuality is my point. Regardless of a tiny genetic abnormality, both of my kids will go on to be unique individuals – alike and different, similar and strikingly opposite. Two bright, beautiful, amazingly awesome kids that I feel lucky to call mine.


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