When Eva died, she had so many big things coming up. She was getting her hips and eye operated on. She was going to get a G-tube placed so she could finally have the tape off her face and the NG tube out of her nose. She was going to have two cochlear implants placed which could have given her hearing. There were no guarantees with this of course, and even less so with CHARGE babies when the anatomy can be so different when surgeons actually get in there, but it was a chance and the surgeons wanted to take that chance for her.
In so many ways I am grateful that if she was going to die so young, she died before having to be put through all those surgeries. But even with that gratitude, I feel like I missed out on something. We missed out on something. We missed out on everything.
There’s a baby in the CHARGE community right now who reminds me so much of Eva. She shares Eva’s chubby cheeks and pointy chin. Her right ear curls in just the way Eva’s did. She even has the same wispy auburn hair. For awhile she had an eye patch and the comparison was just uncanny.
Since I found this family I’ve been following her progress, cheering silently from the sidelines. A month ago she had cochlear implant surgery. I let out a sight of relief when she came out of the surgery safely.
I saw today that the surgery was successful. They had the “switch on” day yesterday and she is responding to sound.
Like I said, there are no guarantees with CHARGE children and cochlear implants. Some of them cannot even have the surgery because their anatomy won’t support it. Some have the wrong kind of hearing loss and others will have the surgery but the implant will not work for them. Some will hear things but their brain cannot make sense of the noise. With all these odds stacked up against her, I can imagine the nerves and anxiety that filled this little girl’s parents as they sat in the audiologist’s exam room waiting to see if she would respond.
Would she be one of those children who we see on viral videos who smiles at their mother’s voice? Or would they switch on the implant, and nothing? Or would they switch it on to a big question mark about its effectiveness with only a “time will tell” to help steer emotion. It was a moment of anticipation that I was longing for and dreading with Eva. I had worked so hard to keep my hopes in check with Eva, but cochlear implants was somewhere I had lost total control of that hope. It burned in me and the thought of having it extinguished in one cruel moment in a doctor’s office terrified me.
For this little girl, it worked out. She can hear. They won’t know exactly what she is hearing for a while, but she responded to sound. That smile happened. The joy in her mother’s voice is unmistakeable.
I am beyond happy for this family. While cochlear implants may not be for everyone (and I respect the deaf community for their stance on this), for children with CHARGE Syndrome who have so many other sensory issues compounding things, having hearing is so important. Knowing that their daughter can learn to hear and may be able to communicate through that hearing is huge. I cried when I saw her mother’s post.
But I wasn’t just crying out of happiness. I was crying because I never got that moment. I could imagine that moment, that moment of switch on, but it would never be mine. This baby, who so looks like Eva, is going on and doing the things Eva never got to do. Her mother is having the experiences I will never get to experience. Feeling the buzz and exhilaration as your child smiles for the first time at the sound of your voice. I never got that with Eva.
It’s hard not to feel intolerably sorry for yourself in these moments. It’s hard not to wonder if I did something to deserve losing Eva, while this other family did everything right.
I know that’s not rational, I know it’s just life. It’s medicine not karma. But the weight of her loss feels particularly heavy when I think of all we missed out on and it drags my mind into places I don’t want to be.
I carry these feelings of joy for this family, and grief for myself in my heart together. They are not mutually exclusive and in fact they feed each other.
Losing Eva has made me realise that beauty and pain exist together. They are two sides of the same coin. It’s the reason I can laugh and cry while watching a video of Eva. The reason I can smile and wince when I watch this little girl, so like, Eva, doing so well, while my daughter is dead.
It’s not fair, and it’s brutal, but it’s also beautiful to understand just how happy this family must be right now and to know how much this could improve the life of their little girl.