Make a Connection
Two weeks into our stay in the neonatal intensive care unit (NICU), I bumped into my daughter’s doctor in an elevator. The doors opened, he walked in, recognized me, and said “I just got your daughter’s cranial ultrasound results. She has a 6% chance of cerebral palsy.”
This was only somewhat of a shock because, despite her first cranial ultrasound two weeks earlier not showing anything ominous, I had been overwhelmed by a feeling that Elise’s path was going to be different at the moment of her birth.
Was this her path?
I numbly walked back into the NICU where my dad waited for me. I sat with him in silence and then said, “Dad, what are we going to do if she has cerebral palsy?” He didn’t miss a beat responding, “We are going to love her. Maybe just a little bit more.”
I’ve spent all the years since reflecting on this. What did he mean “love her a little bit more”?
Having a child with special needs is a commitment to appointments that you weren’t expecting. It’s having a child that may not “give back” or connect to you easily or communicate with you in the conventional way. It’s having to adjust your expectations and vision of what you thought life was going to be.
Here’s where I’ve landed on what my dad meant by loving her, “just a little bit more”.
We will do everything we can to give her an abundant life. We will accept her and our shared journey. We will fight for connection. Even when it’s hard.
When I reflect on how I have loved my daughter, I recognize that at times, responsibility has been more present than connection. There are so many challenges that get in the way of connection – the lack of complex communication between us, the hardship of her physical limitations, the niggling pressure to be spending time working on skills – but commitment to providing that abundant life, to our journey and relationship forces me to step back and make moments for connection.
I have made a conscious effort to slow down and give myself the chance to just be with Elise instead of always feeling the need to be teaching her something. I used to roll a ball back and forth with Elise with therapy at the forefront of my intentions (sitting up, gross motor, etc.) and now we roll the ball together because it’s a way to spend time together that brings her joy. It’s not easy ditching “therapy brain”, but there is a time for everything. There will always be value in letting go of the agenda and allowing yourself to simply delight in being with your kid.
Another reminder I often give myself is to intentionally reduce barriers to connection. For Elise and I, it’s important to choose an activity that isn’t physically difficult for her. I’ve also learned to pay attention to, and appreciate the ways she does communicate. Elise has a special wave and greeting she shares with another family member that just tickles them both; it brings such genuine connection between them.
Yes, the responsibility of making therapy appointments, decisions about education, and basically ensuring nothing is missed can feel completely overwhelming. Above all of the seemingly endless responsibilities though, I believe making a connection with your child should be top priority; it brings something to both of you that can’t be achieved in any therapy session. I haven’t always done this well as I have fought to improve my daughter’s skills, but I believe connection is inherent to love and so now I fight for connection, just a little bit more.
