So, how about that sibling?

Cindy, Vera and baby #2

I first connected with Cindy Angulo a couple years ago when she was a new epilepsy mama. Since then I have enjoyed watching her beautiful, strong and resilient daughter, Vera, grow into a spunky little girl. I could not have been more thrilled for the Angulos when they announced Vera was going to be a big sister but knew that behind the joy lay an anxiety I could only imagine. So, naturally, I asked Cindy to share their journey to decide to add to their family and what she was feeling now with baby #2’s arrival only days away…

Like most families, the pandemic’s stay-at-home orders gave us a lot to think about. Do we have enough seizure medicine stocked up if delivery is delayed and we can’t get to the pharmacy in person? Are we going to run out of milk or diapers before we get a grocery delivery time-slot? When do we resume childcare? Our daughter, Vera, has Sturge Weber Syndrome and experiences febrile seizures. We have kept her home out of safety but that also means that she has been without other kids to play with and to learn from. At two years old, Vera doesn’t know the difference but we can’t help but feel guilty about it. Then during the initial months of the pandemic, a recurring thought kept sneaking into our conversations: should we give Vera a sibling?   

Making the decision to have another child was tough. We toggled back and forth, questioning if we could handle it. By “handle it” I don’t mean physically, although having more than one child automatically opens us up to significantly more chaos in our lives. But in this case, I mean emotionally. Do we have the energy to go through an entire pregnancy again only to find out our child has a really tough life ahead of them? If the child does have a condition, do we have the mental capacity to endure that along with all of Vera’s diagnoses and treatments? Is it even fair for Vera to have to share the attention? 

For the first 18 months of her life, Vera wasn’t able to stand or walk independently, her speech was delayed and we battled regular seizures. So, at first, the decision was simple: we were going to give her all of our attention. Then on May 7, 2020, after a lot of therapy and tons of practice, Vera stood up and took her first steps. It was a huge breakthrough in her gross-motor development, but it was also a turning point in recognizing our abilities as her parents. She did it! We did it! We can exhale. So, how about that sibling?

We were fully prepared for Vera’s arrival. Or so we thought. We got the nursery ready early, we had her name picked out and filled out all the hospital paperwork weeks in advance. Even born four weeks early, we were ready for our healthy baby girl. Because there is no way to test for Sturge Weber Syndrome in the womb, there was no way we could have known what lay ahead until Vera was born and we saw the port wine birthmark on her face and the glaucoma in her right eye. The impending epilepsy announcement would follow with an MRI that confirmed brain damage. Our excitement and pure joy of meeting our beautiful baby girl turned to gut-wrenching anxiety within seconds.

During the next few days, weeks and months, new words were being added to Vera’s medical chart, conditions we didn’t want to know about but had no choice. Port wine stain. Glaucoma. Sturge Weber Syndrome. Epilepsy. Peripheral blindness. Hemiparesis. Cerebral Palsy. All of a sudden we had a whole lot of important, life-changing decisions to make on her behalf… as if being first-time parents to a newborn wasn’t overwhelming enough. 

When Vera made such huge progress last spring, we felt hopeful about having a second child. We would never feel fully ready, but we made the decision to be brave enough to try. I’m now nine months pregnant with our second child and dread every OB appointment that I attend by myself (due to Covid). Anxiety is built-in when you’re a parent of a child with special needs. But it’s more than that, isn’t it? We know what’s possible. Nothing is too rare. So, the anxiety builds as we wait. 

I know we should think positively and focus on the fact that we have a lot of amazing support that has helped us prepare for whatever comes next. But I also know that I won’t fully relax until the baby is born and I see for myself that my child is healthy. Even then, I’ll still probably rush to record any irregular movements or indications as our baby grows. That said, if there is a medical condition, we’ll handle it. We’ve done it before, we can do it again, right? We will wing it and do our best to make sure our kids are happy and comfortable, because that’s all we can do. And if that doesn’t work, there’s always wine.