Letting go

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.

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

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

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

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

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.

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

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.

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

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.

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.

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.

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.

~ Julia

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Three years and countless battles

Three years ago, I was 41 weeks and 1 day pregnant with a stubborn, stubborn baby who refused to come out. And if you think for one moment that that 1 day is insignificant, you have never been pregnant.

Her name is Lillian. And three years ago on this day she was born.

She was high up in my rib cage, far away from any exit strategy, and had made zero progress or move to come out. She was happy in there. Coming out was not her idea. And therefore, she would not participate or help in any way. This should have been a sign of things to come.

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Lillian has always forged her own way, doing things in her time on her schedule according to her plan. Always.

The doctor who performed the C-section to get her out of my belly said she had never seen a baby who was so overdue that high up before. She literally had to reach up into me to pull her out. After hanging out with Lillian for three years, I’m not surprised in the least that was the case.

She had a striking white patch in her black, black hair, just like her daddy. We knew this meant she had been born with the same genetic disorder Ben has. It was the talk of the nurses in the delivery room, our family, and anyone who met her. All I knew was all that hair was the cause for all of my heartburn during my pregnancy with her.

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She needed hearing aids and got them when she was just four months old. We were so new at the whole baby-with-hearing-aids thing that we had to be told by the audiologists that we shouldn’t let her have them in while we were driving because she’d probably eat them. They were right. She did.

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She also took them off and threw them, hid them, chewed them, lost them, delivered them to us, and generally gave us countless panic attacks around them (you try putting thousands of dollars of equipment in a baby’s ears and you tell me how calm you are).

She also rocked them. They were pink and she was and still is a rock star at every appointment, sitting still while molds are formed, while tests are run, while tubes are cut and while adjustments are made.

And she used them as an act of defiance when she was mad at us, looking us straight in the eyes while pulling them out and throwing them. Luckily they were attached by a cord and for a while tucked under a cap that made her look like she was a 1920’s bather or an old-school pilot, but still no one could lose her ‘ears’ like Lillian could.

Lillian was a candidate for a cochlear implant, giving her the potential to have near perfect hearing. Since she was completely deaf in her right ear and had a mild loss of hearing in her left ear, this was miraculous. It has since proved to be just that.

During the operation she was amazing, even collecting a Dr. Seuss as her anesthesiologist (at a children’s hospital! Seriously!). But afterwards she was true to form, pulling out three different IVs. And while I would have milked that operation for all it was worth, she was up and bouncing around like her normal self in no time afterwards.

Lillian has always been her own person, quiet and reserved in a new place, loud and rambunctious where she feels safe. Roaring like a tiger or ARGHing like a pirate at the top of her lungs. Lauding every fart or burp that comes out of her little body or anyone else’s for that matter. Reveling in chaos yet thriving in comfortable situations. Refusing to smile for posed pictures but cackling for anyone’s phone camera.

She is the buttliest of butts and I mean that in the nicest, kindest, most loving way possible. She has taught me the art of negotiation, the art of patience, the art of snuggling on the couch until she can’t sit still anymore. She has taught me that bravery often comes in the smallest of packages and that even though she was handed an extraordinary set of circumstances she is a completely normal kid.

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Today is her day and I’m so glad she is mine. Ours. In our family and in our lives.

Happy happy birthday, Lillian!

Love, Mama (a.k.a. Julia)