Každá budúca mamička dúfa, že jej dieťa sa narodí zdravé a bez akýchkoľvek komplikácii. No nie vždy tak tomu je a budúci rodičia sa niekedy musia pripraviť aj na neistú budúcnosť svojho nenarodeného dieťaťa. Takéto skľučujúce momenty si zažila aj Aubrey, ktorej ešte vo štvrtom mesiaci tehotenstva lekári zvestovali smutnú správu.
„We’ve come so far my dear, look how we’ve grown. And I wanna stay with you until we’re grey and old.“ Back where we dedicated our lives to each other more than a year and a half ago! #GainingAGann #CleftStrong #SummerBaby
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Prvých 17 týždňov tehotenstva bolo po Aubrey a jej partnera úplne bežných – zariaďovali detskú izbu, vyberali mená pre dieťatko a chodili v stanovený čas na ultrazvuky. Všetko sa však rázom zmenilo, keď sa rozhodli ísť na ultrazvuk aby zistili pohlavie dieťatka. Namiesto toho sa od gynekológa dozvedela, že na ultrazvuku zistili, že ich dieťatko má rázštep pery a “iné možné vrodené chyby”.
Today is World Birth Defects day! 3-6% of infants worldwide are born with a birth defect (1 in 700 are born cleft affected). Hearing that Christian would be born with a cleft lip was terrifying. I can still remember driving to and from work everyday throughout my pregnancy, listening to @ptxofficial „How Great Thou Art“. I listened to it multiple times a day, singing it through tears and sobs. Some days I felt the words of the song to be true; other days I felt like the song was a lie. Just the other day my music shuffled to the song. And I started singing it like I have hundreds of times. This time, with no doubt in my mind of its truth. And then a little voice from the backseat started singing it too. She wasn’t singing the words, obviously, but Christian was BELTING it out with passion. My little girl, who’s birth defect made my own faith shaky, singing along with me about how great God is. She is living proof in how great He is. Two years later, back in the car and listening to the same song, but singing it with my sweet daughter. With tears of joy instead of tears of fear. My 1 in 700 – I’m so grateful for her and humbled by this journey.
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The month of July is Cleft & Craniofacial Awareness month. The whole reason I started sharing Christian’s story was to raise awareness – so that cleft families would feel less alone & to educate people on what it means to be born with a cleft. I feel like I’ve kept it real and raw and shared the beautiful and difficult things of Christian’s journey from my perspective. One of the hardest things I hear from people who just don’t get it is something along the lines of „at least it’s just a cleft“ „well that’s an easy fix“ „it could be much worse“ „that’s just one surgery“. Well…they’re so wrong. The hardest part for me (and there have been many), is walking into post-op after a surgery. I’ll paint a picture of what it was like for palate repair this time last year: we got Christian dressed in her hospital gown and handed her over to a nurse. We watched the nurse take her into the OR as the big doors closed behind them. Three hours later we get a call that she’s out of surgery. We wait in a small room for what seems like forever, and the surgeon finally comes in to tell us how the surgery went. He leaves, and we wait another eternity for a volunteer to come in and tell us she’s awake from the anasthesia and we can go see her. He takes us into a big room with hospital beds lining the walls and different patients waking up from anasthesia. We have to wash our hands at the entrance as my eyes search the room for my baby – the only hospital bed that’s built like a crib. I walk across the room in a daze as I anticipate what I’ll see. There’s Christian, groggy and waking up, with blood crusted around her mouth and nose, a rubber tube in her nostril, and a stitch in her tongue with the string taped to her face. She’s in pain and scared and confused, and there’s nothing I can do about it. I pick her up as the nurses help position and move wires and tubes. I talk to her, sing to her, and stroke her face to try and calm her down. She’s groaning and bleeding on me and crying. And I’m crying too. They put me in a wheelchair so I can hold her as they take us up to her room – where we spend the next 6 days until she’s finally willing to take sips of water. *Cont. below*
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“Cítila som sa akoby mi na hruď spadla tona tehál. Nemohla som dýchať,” opísala Aubrey. Nasledujúce týždne tehotenstva tak strávila na stretnutiach s doktormi, tímami chirurgov a hľadaním materiálov, s ktorých sa naučí ako sa najlepšie postarať o ich dcérku. “No väčšinou som bola plná strachu z neznáma,” dodala. Malá Christian Grace sa narodila 6. júla 2018 a lekári jej oficiálne diagnostikovali úplný rázštep pery a podnebia.
A smile-versary. Just another term I never had used or heard of before becoming a Cleft Mom. A year ago today, my sweet girl got her forever smile. As a cleft parent, it’s sometimes hard to find the balance between wanting your child’s cleft journey to be something they’re proud of but also not wanting them to ever feel like it defines who they are. That first year, our life was centered on it. Cleaning her NAM every night, changing her tape every day, pumping because she couldn’t breastfeed, doctor appointments once, twice, sometimes even three times a week. Three times on anesthesia. Two major surgeries. Now we’re in a new phase, where we don’t say „cleft“ every day. There will be weeks or months in the next decade where the cleft feels back at the center, but thankfully a big part of the journey is behind us. I would never want Christian to feel ashamed of how she was born. Her cleft is one small thing that has helped shape her (and will continue to shape her) into who she is. She is strong, she perseveres, she’s positive and joyful, she’s beautiful. So today is a day we celebrate her bravery. We remember the first smile we fell in love with. We think back on the hardships she’s overcome. And we’re grateful for how far Christian has come. Our little warrior girl. Happy smileversary! #cleftstrong #cleftproud
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In response to @wendyshow bullying: There were a lot of things about Christian’s cleft diagnosis that scared me. The surgeries, mainly, and the other possibilities like hearing loss, failure to thrive, feeding issues, etc. But something else that kept me up at night was the way she would look and her eventual scar. Not because I was worried she wouldn’t be beautiful – I knew she would be. But knowing down the road, when she started school maybe, people would start asking her about it. I hated the thought of people using her scar/nose as a reason to tear her down, to make her feel less than, to try to make her feel anything but beautiful. I imagined first dates, first days of school, trips to the playground, job interviews in which she felt self conscious or didn’t see her true beauty. I know how mean kids can be. I was a kid. I’ve worked with middle school kids. But you want to know what’s worse than a mean kid? A mean adult. Bullies in school usually grow up to be bullies in the adult world. They make fun of people for their differences and they belittle people. They don’t think about how their words and actions may hurt others , or worse, they just don’t care. @wendyshow recently spoke about Joaquin Phoenix. Her ignorance of the diagnosis was obvious, and she went on to gesture with her hand/face a „hair line fracture“, which was a poor coverup for her almost blurting „harelip“ which is a derogatory term for a cleft lip. The crowd laughed as she mentioned a cleft, and she continued doing it. It makes me cringe to think that one day someone might do this same gesture to Christian. One reason why I share her story is because I want Christian to grow up in a world that’s more inclusive and kind. She deserves it. She deserves to not be judged by the way she looks. Christian is beautiful, strong, and confident, and I hate to think the bullies of the world will hurt that. Be the person that’s kind to someone who is different. Be the person who speaks up for the little guy. Stop being mean and stop silently watching while others are mean. When given the choice between being right and being kind, choose kind. #cleftstrong #cleftproudandstrong.
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Komplikácie, ktoré by pri tejto diagnóze mohli nastať sa týkali kojenia, dýchania, rozprávania alebo sluchu. Ešte v septembri toho istého roka ju čakal prvá operácia, ktorá bola zameraná na opravu pery. Tá sa podarila a malá Christian sa zmenila na nepoznanie. Síce ju do jej 18-tky čaká ešte niekoľko zákrokov no už teraz má ona a jej rodičia dôvod na úsmev. Okrem iného je Christian dokonca aj veľkou sestrou, keďže zhruba pred dvoma mesiacmi Aubrey porodila malú Heidi Blake.
Sisters. So alike but so uniquely themselves. Like different flowers from the same garden. 🌻🌹
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Red, white, & TWO years old ❤️🤍💙
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zdroj: littlestwarrior.com