Although our twins are nineteen months of age, we can’t help but sometimes feel as if Eleanor operates very much as an only child. While Eleanor is a healthy, energetic, and spunky toddler, Andrew is blind, developmentally a newborn, and has an intensive therapy schedule; all of which makes for a difficult play partner. But to our delight, in recent days, Eleanor has been making the best of the situation in the following ways: we’ll find her snuggled up next to Andrew on the floor, she loves pulling off his socks, and kisses him tons. She presses his belly button (or what’s left of it, long story) and says “beep,” and loves to rock his chair. When he cries, she yells, “NO!” and “WHY?” and sometimes grabs his hand and pulls it to her cheek. Eleanor carefully watches what Andrew’s therapists do with him and when they leave, she takes his therapy toys and gadgets and mimics what they do. All in all, she is a fine twin sister and it is in these moments that we can sometimes forget the grief that can come with the two not being able to play together in the way that most siblings do. Here is a video of the two. Please excuse the mess! “Bbo-bbo” means “kiss” in Korean:
Eleanor loves Andrew because we, as parents, love Andrew. Generally speaking, when it comes to interacting with a special needs sibling, children take queues from their parents. We’ve noticed this outside of the family as well: if a parent acknowledges that Andrew is there and models warm and loving interactions with him, the child tends to follow suit. This is awesome when it happens. With our own family, we hope that Eleanor continues to watch us model our deep love for Andrew and that her experience as Andrew’s twin sister will help mold her into a more kind, loving and understanding individual.
Recently, our family had the privilege of meeting another family who has been on this walk much longer than we have–27 years! Like us, they also had preemie twins and one twin became severely disabled after a devastating infection that occurred while in the NICU. The lengths this family has gone to incorporate their severely disabled adult daughter into daily family life is inspirational, and the mother shared how having a special needs sister had shaped each of their three other children in a positive way. We even got to meet one and she seemed pretty awesome! Below are just a couple of the many photos we took of home adaptations made to accommodate their daughter’s needs. Not included are photos of a two-car garage that was converted into a lovely first floor suite, too. Having never met another family with a child similar to Andrew, it was a treat to meet and talk with somebody who has been there, is still there, and has lived to share her experiences–the good and the bad–with sincerity and a smile.
And this is just the outside!