I have been holding my breath for about 5 years.
Holding my breath since I peed on a stick, found out we were pregnant with our second, and praying that whatever our baby would show up with, full hearing or no hearing, that we would be prepared for it.
Holding my breath when the nurses exclaimed that our baby had the same ‘birth mark’ as her daddy. Trying desperately to tell Ben with my eyes and my heart while lying stuck and unable to move on the operating table that I loved him, that I loved our new daughter, that I loved everything and everyone and we would get through this.
White forelock, just like Daddy.
Holding my breath when the first hearing test and every hearing test after told us what we already knew due to the white forelock just like her daddy – Lillian couldn’t hear. Nothing out of the right ear. A small amount out of her left ear.
I kept holding my breath, through her first hearing aid fittings at 4 months old, to her visits to Sick Kids for her cochlear implant, through the surgery and out again, through all the times she pulled off her ‘ears’ and popped them in her mouth.
Baby hearing aids for baby ears
I held my breath as we made the decision to keep me home as I couldn’t imagine anyone else having to deal with or wanting to deal with or being able to deal with Lillian’s ears like I could. I remember feeling gratified when I picked Lillian up from a babysitter to find her ears in her diaper bag because the woman just couldn’t do it. I remember holding my breath while we wrote up instruction sheets for every babysitter after, all family, never anyone but, until Lillian was old enough to help the babysitter put her ears back on because she was the expert.
Monkey Gear cap to stop her from eating her ears like candy…or toes
I held my breath as we went through extensive speech therapy, starting at 4 months old with her first of a handful of speech therapists, until we met the one that would bring the words out of Lillian’s mouth, the one that would sit there and watch me cry, the one that would tell me over and over I was doing a good job. I was a good mom. I was working hard and so was Lillian and it would be okay. Dear Heather, the speech therapist who I said I would invite to Lillian’s high school graduation so she could hear Lillian’s valedictorian speech, we love you. And are so grateful.
Just after her cochlear implant surgery…rocking the hair and the bandage
I held my breath as this year kept looming closer, knowing this was the goal – getting Lillian ready for school. Working on all the language that naturally comes so easily to so many babies, including my own Sophie and Isaac, struggling with sounds and concepts and shapes, repeating phrases and words and sliding my voice up and down to indicate with sound as well as with language what I was trying to say to my tenacious, stubborn, awesome, beautiful Lillian. Hoping and praying that the delay between Lillian’s and her peer’s development would never rear its ugly head, would be held off as long as possible. Enjoying evaluation after evaluation that showed her either average or above her age in speech development, even though her hearing age was stunted by the 13 months she went without being implanted.
Playing the piano with her implant turned ON for the first time
I held my breath as I watched my stunning, deep-loving daughter close up, clam up, shut down time after time after time in new situations, around new people, in any scenario remotely unfamiliar. I worried and fretted and talked to our social worker who had been with us since the beginning. I talked my head off to Heather, the woman who was on my team in this crazy, breathless trek to school. I was given oodles of advice. I was given oodles of support. I was given oodles of moments to breathe, yet still, I held that breath.
Lillian LOVING Isaac – after every walk from school, Isaac would flip out on the floor while I brought in the stroller. Lillian would hang out with him until I could pick him up. They’d lie there giggling and I’d fall in love all over again.
I held my breath as our home deaf teacher graduated us from the program because in a couple of months Lillian would be attending full-time, normal-kid school. I held my breath as she told me, dear Jaclyn, that Lillian was awesome, bright, funny, and would be fine. I didn’t believe her. I wanted to believe her. I held on.
Playing the piano with much longer hair…and more seasoned ears
I held my breath as I tried to explain school to Lillian, using all the vocabulary sheets we’d been given by Teacher Jaclyn, as Lillian called her, and Heather, My Heather, as she was fondly referred to, focusing on the fun! the excitement! the friends! we’d make. I took her back-to-school shopping with Sophie and tried to make it as fantastic as possible, finding her Spider-Man everything – backpack, shoes, boots, and lunch bag. We picked out a back-to-school outfit, although she has never been to school, and it didn’t have any Spider-Man on it, but damn it the skirt was red…like Spider-Man.
Her first ponytail! Which made her look older and showed off her ears that are normally hidden in her crazy hair.
I felt like the breath was going to burst out of my eyes and ears and heart and mouth as we went to her personal, special meet-the-teachers and classroom tour a full week before her fellow students would arrive. I watched as she had her first pee accident and prayed, PRAYED, that this wouldn’t set the standard, that she would swing going pee and going poop and wiping her own butt and not melting down every. single. time. like she did with me at home. I felt like I was going to explode as she went from shutdown kid to open, playing kid with one of her teachers, while we explained her ears to her other two teachers. I didn’t cry. But deep down, I wanted to bawl like a baby. Because this was the moment.
Spider-Man cape for a hill-climbing Spider-Man
And then, the breath got too big for me, so big for me, as we walked her up the hills to her very first full day without us. As Aunt Toni held her hands, and I watched trying to keep it together, as she wore her too-big-for-her backpack and looked determined in her Lillian way. I tried not to hold her too long or not long enough in our good-bye hug, breathing in her hair and smell and warmth one last time before I started sharing her every day with other people.
Day 1 before the walk to school. Sophie had a full day and Lillian was only going for a half an hour.
And as she walked into the school, the breath held on, dripping out only in a few tears in my eyes, as she waved and smiled and chatted with her dear friend Isaac, who we had asked to be in the class with her so she would have one person she knew.
First full day walk to school, holding onto Aunt Toni’s hand and looking so damn small and big and determined and worried.
The breath didn’t let go or calm down or reduce in pressure until we went to pick her up and noticed her on the monkey bars, swinging like the monkey she is, playing, wearing the same pants that we had sent her in, indicating no accidents, and then the bell rang and she came running, smiling, and hugging us when she was released by her teacher from her line, which she voluntarily got in, waited in, and fell in with. And then I felt lighter than light when she told us her favourite part of the day was the cheese in her lunch, that she loved her lunch, that she wanted the exact same lunch the next day.
In line with her BFF…no looking back, no tears, no more breath.
And the breath was gone, just like that, because we had made it. And we’ve been doing it now for almost two weeks. And the breath is still gone. And the successes keep pouring in. And my dear, sweet, Lillian, I couldn’t be prouder.