The Lantern Against All Fears | A Special Needs Story that Stirs
My Kabuki Girl
[{'start': '0.400', 'end': '6.879', 'text': 'So, I met Minnie several years ago on'}, {'start': '3.520', 'end': '10.000', 'text': 'the standup comedy circuit. She is a'}, {'start': '6.879', 'end': '12.000', 'text': 'pocket rocket, like an absolute dynamo.'}, {'start': '10.000', 'end': '15.120', 'text': 'I remember her being on stage with a'}, {'start': '12.000', 'end': '18.279', 'text': 'guitar going, "This woman has talent,'}, {'start': '15.120', 'end': '20.960', 'text': "has energy, has heart. She's"}, {'start': '18.279', 'end': '22.840', 'text': 'amazing." And since we performed'}, {'start': '20.960', 'end': '26.960', 'text': 'together and shared stages around'}, {'start': '22.840', 'end': '29.679', 'text': "Sydney, she's had a massive life shift."}, {'start': '26.960', 'end': '31.840', 'text': "And I've been watching her go through"}, {'start': '29.679', 'end': '36.399', 'text': 'this this thing that she will be telling'}, {'start': '31.840', 'end': '39.360', 'text': 'you about with utter awe and in and and'}, {'start': '36.399', 'end': '43.719', 'text': 'feeling just incredible inspiration. So'}, {'start': '39.360', 'end': '43.719', 'text': 'please give it up for Mini Mini.'}, {'start': '43.760', 'end': '51.039', 'text': 'Thank you, Monica. Hello.'}, {'start': '48.200', 'end': '54.000', 'text': 'Hi. My husband and I have been together'}, {'start': '51.039', 'end': '56.399', 'text': 'for more than 21 years, right? And for'}, {'start': '54.000', 'end': '58.879', 'text': 'the most part of it, we were really not'}, {'start': '56.399', 'end': '61.079', 'text': "interested in having children. It's not"}, {'start': '58.879', 'end': '63.559', 'text': "that we didn't like children. We love"}, {'start': '61.079', 'end': '66.159', 'text': 'them, most of'}, {'start': '63.559', 'end': '68.600', 'text': 'them. We always thought that when you'}, {'start': '66.159', 'end': '72.240', 'text': 'become a parent, your priorities'}, {'start': '68.600', 'end': '74.439', 'text': 'change. And we truly we loved our'}, {'start': '72.240', 'end': '77.360', 'text': 'projects and we truly believed'}, {'start': '74.439', 'end': '79.600', 'text': "that we'd rather not be parents at all"}, {'start': '77.360', 'end': '83.280', 'text': 'than be irresponsible or careless'}, {'start': '79.600', 'end': '86.960', 'text': 'parents. Maybe it was CO that slowed'}, {'start': '83.280', 'end': '90.080', 'text': 'down our artistic projects. Or maybe as'}, {'start': '86.960', 'end': '93.119', 'text': 'we turned 40, we could really hear that'}, {'start': '90.080', 'end': '95.040', 'text': 'clock ticking. But anyway, at a certain'}, {'start': '93.119', 'end': '98.880', 'text': "point, we looked into each other's eyes"}, {'start': '95.040', 'end': '101.119', 'text': 'and we said, "What are we doing here? If'}, {'start': '98.880', 'end': '102.720', 'text': "we're not going even to try to have a"}, {'start': '101.119', 'end': '103.799', 'text': "child, we're going to regret it for the"}, {'start': '102.720', 'end': '109.119', 'text': 'rest of our'}, {'start': '103.799', 'end': '113.119', 'text': 'lives. Let\'s have a baby. We are ready."'}, {'start': '109.119', 'end': '113.119', 'text': 'life heard us and said,'}, {'start': '114.600', 'end': '120.399', 'text': '"Ready." It didn\'t even take us a long'}, {'start': '117.119', 'end': '123.360', 'text': 'time to conceive. But at the morphology'}, {'start': '120.399', 'end': '126.719', 'text': 'scan and 20 weeks of pregnancy, we found'}, {'start': '123.360', 'end': '129.280', 'text': 'out that the baby had heart defects and'}, {'start': '126.719', 'end': '132.440', 'text': 'a few organ abnormalities. And when she'}, {'start': '129.280', 'end': '136.720', 'text': 'was 3 weeks old, we found out the final'}, {'start': '132.440', 'end': '138.760', 'text': 'diagnosis. She has Kabuki syndrome.'}, {'start': '136.720', 'end': '143.440', 'text': 'You know when you choose to become a'}, {'start': '138.760', 'end': '146.800', 'text': 'parent, you know that your world is not'}, {'start': '143.440', 'end': '149.920', 'text': 'just expanding. You are going to learn'}, {'start': '146.800', 'end': '152.879', 'text': 'skills in completely new fields. Your'}, {'start': '149.920', 'end': '156.400', 'text': 'brain is going to be rewired. Your whole'}, {'start': '152.879', 'end': '158.959', 'text': 'set of priorities and responsibilities'}, {'start': '156.400', 'end': '163.560', 'text': 'will shift to cater to the needs of a'}, {'start': '158.959', 'end': '166.000', 'text': 'new life. Your world becomes a'}, {'start': '163.560', 'end': '167.160', 'text': 'galaxy. But when you become a special'}, {'start': '166.000', 'end': '172.160', 'text': 'needs'}, {'start': '167.160', 'end': '174.599', 'text': 'parent or girl, you enter the realm of a'}, {'start': '172.160', 'end': '177.599', 'text': 'comic book'}, {'start': '174.599', 'end': '180.480', 'text': "multiverse. Those multiverses don't"}, {'start': '177.599', 'end': '182.599', 'text': 'abide by the laws of physics, right?'}, {'start': '180.480', 'end': '185.440', 'text': "They don't have any scientific"}, {'start': '182.599', 'end': '188.560', 'text': 'explanation. And yet, you have to accept'}, {'start': '185.440', 'end': '191.440', 'text': "the premise that that's how it works"}, {'start': '188.560', 'end': '194.239', 'text': 'whether you like it or not. like the'}, {'start': '191.440', 'end': '196.000', 'text': "Green Lantern. I know it's not the most"}, {'start': '194.239', 'end': '198.640', 'text': 'popular comic book, but I like the'}, {'start': '196.000', 'end': '201.760', 'text': 'story. And also, green is the color of'}, {'start': '198.640', 'end': '205.040', 'text': "Kabuki syndrome. So, that's the comic"}, {'start': '201.760', 'end': '208.000', 'text': 'book I want to mention. The ring of the'}, {'start': '205.040', 'end': '211.280', 'text': 'Green Lantern makes you do incredible'}, {'start': '208.000', 'end': '213.920', 'text': 'things, right? You become superhero when'}, {'start': '211.280', 'end': '215.920', 'text': 'that ring as and you can move the'}, {'start': '213.920', 'end': '219.519', 'text': 'mountains as long as you accept the'}, {'start': '215.920', 'end': '221.280', 'text': 'rules. You believe in it. And now and'}, {'start': '219.519', 'end': '225.120', 'text': 'then you go back home to recharge it'}, {'start': '221.280', 'end': '228.319', 'text': 'with the lantern. So a mix between Santa'}, {'start': '225.120', 'end': '228.319', 'text': 'Claus and the'}, {'start': '228.760', 'end': '238.400', 'text': 'Tesla. In the same way asking myself'}, {'start': '234.599', 'end': '241.519', 'text': 'why why did this syndrome have to happen'}, {'start': '238.400', 'end': '245.840', 'text': "to us doesn't even doesn't really have"}, {'start': '241.519', 'end': '248.439', 'text': 'any answer that makes sense.'}, {'start': '245.840', 'end': '253.120', 'text': 'I have to'}, {'start': '248.439', 'end': '254.360', 'text': 'accept the premise that my daughter has'}, {'start': '253.120', 'end': '258.000', 'text': 'Kabuki'}, {'start': '254.360', 'end': '260.560', 'text': "syndrome even though as a condition it's"}, {'start': '258.000', 'end': '261.800', 'text': 'pretty rare. Even though my husband and'}, {'start': '260.560', 'end': '264.800', 'text': 'I are not'}, {'start': '261.800', 'end': '267.360', 'text': 'carriers, even though the chances of'}, {'start': '264.800', 'end': '269.680', 'text': 'conceiving someone with this syndrome'}, {'start': '267.360', 'end': '273.120', 'text': "don't increase with the age of the"}, {'start': '269.680', 'end': '276.160', 'text': 'parents like Down syndrome for example,'}, {'start': '273.120', 'end': '280.560', 'text': "even though during my pregnancy I've"}, {'start': '276.160', 'end': '282.680', 'text': 'been the healthiest and most cautious'}, {'start': '280.560', 'end': '286.840', 'text': 'mama on'}, {'start': '282.680', 'end': '290.479', 'text': 'earth, it was a spontaneous genetic'}, {'start': '286.840', 'end': '294.160', 'text': 'mutation. a lottery ticket if you want,'}, {'start': '290.479', 'end': '297.680', 'text': 'a random occurrence that has absolutely'}, {'start': '294.160', 'end': '303.080', 'text': 'no scientific explanation whatsoever.'}, {'start': '297.680', 'end': '307.000', 'text': 'And yet that has completely reshaped our'}, {'start': '303.080', 'end': '309.759', 'text': 'lives, our expectations, our'}, {'start': '307.000', 'end': '315.199', 'text': 'identities forever.'}, {'start': '309.759', 'end': '319.160', 'text': 'The complexities and the layers of um a'}, {'start': '315.199', 'end': '323.199', 'text': 'rare syndrome multiverse are so'}, {'start': '319.160', 'end': '325.280', 'text': "uh intricated that 10 hours wouldn't be"}, {'start': '323.199', 'end': '326.639', 'text': 'enough to describe them all. I only have'}, {'start': '325.280', 'end': '330.639', 'text': "10 minutes otherwise they're going to"}, {'start': '326.639', 'end': '333.600', 'text': 'kill me. So tonight I only want to focus'}, {'start': '330.639', 'end': '338.560', 'text': 'on a specific topic which is actually'}, {'start': '333.600', 'end': '340.199', 'text': "the Green Lantern's villain fear."}, {'start': '338.560', 'end': '344.720', 'text': 'I have been'}, {'start': '340.199', 'end': '346.800', 'text': 'scared so scared for the past well three'}, {'start': '344.720', 'end': '350.000', 'text': 'years really.'}, {'start': '346.800', 'end': '353.440', 'text': 'I have been scared and perplexed at that'}, {'start': '350.000', 'end': '356.560', 'text': 'morphology scan which lasted two more'}, {'start': '353.440', 'end': '358.960', 'text': 'than two hours and a half and they had'}, {'start': '356.560', 'end': '361.680', 'text': 'to repeat over and over again every time'}, {'start': '358.960', 'end': '364.720', 'text': 'with a more senior technician until the'}, {'start': '361.680', 'end': '367.759', 'text': 'owner of the radiology center came'}, {'start': '364.720', 'end': '371.840', 'text': 'visited me and concluded'}, {'start': '367.759', 'end': '374.080', 'text': "um your hearts your baby's heart has to"}, {'start': '371.840', 'end': '376.880', 'text': 'be seen by a cardiologist in a hospital'}, {'start': '374.080', 'end': '380.240', 'text': 'as soon as possible.'}, {'start': '376.880', 'end': '382.160', 'text': 'I have been worried and scared'}, {'start': '380.240', 'end': '385.919', 'text': 'throughout the rest of the pregnancy'}, {'start': '382.160', 'end': '388.520', 'text': "pregnancy as I didn't want to cause to"}, {'start': '385.919', 'end': '390.440', 'text': 'my baby any further'}, {'start': '388.520', 'end': '395.120', 'text': 'complications. I'}, {'start': '390.440', 'end': '397.759', 'text': 'was worried and scared that perhap well'}, {'start': '395.120', 'end': '400.880', 'text': "with birth and that's why I insisted"}, {'start': '397.759', 'end': '404.199', 'text': 'many times for an elective ceseria but'}, {'start': '400.880', 'end': '406.960', 'text': 'the medical team denied it. Girl, do you'}, {'start': '404.199', 'end': '409.080', 'text': "understand? It's so much better when you"}, {'start': '406.960', 'end': '411.680', 'text': 'give birth'}, {'start': '409.080', 'end': '413.759', 'text': 'naturally. Vaginal birth is always'}, {'start': '411.680', 'end': '416.000', 'text': 'better than a cesarian, especially in'}, {'start': '413.759', 'end': '416.000', 'text': 'the'}, {'start': '417.479', 'end': '427.440', 'text': '1950s. So naturally, I got induced at 39'}, {'start': '423.280', 'end': '430.720', 'text': 'weeks. I ended up in labor for 12 hours'}, {'start': '427.440', 'end': '432.520', 'text': 'with no epidural and still I ended up'}, {'start': '430.720', 'end': '435.039', 'text': 'with an emergency'}, {'start': '432.520', 'end': '438.120', 'text': 'cesarian. So I experienced the best of'}, {'start': '435.039', 'end': '444.639', 'text': 'both worlds. Lucky'}, {'start': '438.120', 'end': '447.199', 'text': 'me. Uh I was so sad sad and scared when'}, {'start': '444.639', 'end': '448.960', 'text': 'they immediately took her away from me'}, {'start': '447.199', 'end': '452.720', 'text': 'to put her name in Nikki where at the'}, {'start': '448.960', 'end': '456.120', 'text': "children's hospital where at 8 days old"}, {'start': '452.720', 'end': '460.240', 'text': 'she got her heart'}, {'start': '456.120', 'end': '462.199', 'text': 'surgery and that my friends have been'}, {'start': '460.240', 'end': '465.840', 'text': 'the most'}, {'start': '462.199', 'end': '468.840', 'text': 'terrifying the hardest day of my life'}, {'start': '465.840', 'end': '471.680', 'text': 'and I still remember it as if it was'}, {'start': '468.840', 'end': '474.560', 'text': 'yesterday being in that corridor as a'}, {'start': '471.680', 'end': '478.000', 'text': "children's hospital with her in one of"}, {'start': '474.560', 'end': '480.960', 'text': 'those life support incubators with all'}, {'start': '478.000', 'end': '484.080', 'text': 'those doctors and emergencies around us'}, {'start': '480.960', 'end': '487.400', 'text': 'with their operation theater scrubs'}, {'start': '484.080', 'end': '490.000', 'text': 'handing me a document that I had to sign'}, {'start': '487.400', 'end': '493.440', 'text': 'stating that they would have to'}, {'start': '490.000', 'end': '496.039', 'text': 'reconstruct her whole aartic arch and'}, {'start': '493.440', 'end': '498.960', 'text': 'imagine her heart was the size of a'}, {'start': '496.039', 'end': '500.039', 'text': 'walnut try to fixed two holes in two'}, {'start': '498.960', 'end': '503.800', 'text': 'different'}, {'start': '500.039', 'end': '507.520', 'text': 'ventricles and that I was'}, {'start': '503.800', 'end': '510.039', 'text': 'accepting the chances of her dying on'}, {'start': '507.520', 'end': '512.800', 'text': 'that operation the'}, {'start': '510.039', 'end': '515.680', 'text': 'table and that those chances were double'}, {'start': '512.800', 'end': '520.120', 'text': 'the standard mortality rate due to how'}, {'start': '515.680', 'end': '520.120', 'text': 'complex her situation was.'}, {'start': '521.120', 'end': '528.040', 'text': 'did six hours of open heart surgery and'}, {'start': '524.600', 'end': '532.519', 'text': 'bypass where my heart stopped with'}, {'start': '528.040', 'end': '535.279', 'text': 'hers. Every single muscle of my body was'}, {'start': '532.519', 'end': '538.080', 'text': "shaking. I couldn't rest. I couldn't"}, {'start': '535.279', 'end': '540.720', 'text': "breathe. I couldn't even talk. I tried"}, {'start': '538.080', 'end': '543.600', 'text': 'to call my sister, but over the phone I'}, {'start': '540.720', 'end': '547.200', 'text': 'could only cry and so on. She was'}, {'start': '543.600', 'end': '551.720', 'text': 'repeating, "You have to be strong. You'}, {'start': '547.200', 'end': '551.720', 'text': 'have to be strong for her.'}, {'start': '551.920', 'end': '555.640', 'text': 'The surgery was'}, {'start': '553.640', 'end': '558.959', 'text': 'successful,'}, {'start': '555.640', 'end': '561.000', 'text': 'although it needed a fix with a heart'}, {'start': '558.959', 'end': '564.320', 'text': 'patheter after a few'}, {'start': '561.000', 'end': '567.519', 'text': 'months. But the first year of her life'}, {'start': '564.320', 'end': '569.920', 'text': 'has been one fear after the other, one'}, {'start': '567.519', 'end': '573.160', 'text': 'hospitalization after the other, one'}, {'start': '569.920', 'end': '576.760', 'text': 'test after the other to try to figure'}, {'start': '573.160', 'end': '580.640', 'text': 'out all her aspiration and reflux'}, {'start': '576.760', 'end': '583.839', 'text': 'issues. And in general, um, the'}, {'start': '580.640', 'end': '588.120', 'text': 'beginning of her life has really been a'}, {'start': '583.839', 'end': '591.519', 'text': 'fight against a multiverse'}, {'start': '588.120', 'end': '594.440', 'text': 'superb. And to this day, we are still'}, {'start': '591.519', 'end': '596.959', 'text': 'facing lots of fears and'}, {'start': '594.440', 'end': '599.040', 'text': 'uncertainties. Will she need a second'}, {'start': '596.959', 'end': '602.920', 'text': 'open heart surgery this time for the'}, {'start': '599.040', 'end': '607.120', 'text': 'lung artery? And if so,'}, {'start': '602.920', 'end': '608.040', 'text': 'when will when is the hip surgery going'}, {'start': '607.120', 'end': '610.560', 'text': 'to'}, {'start': '608.040', 'end': '614.120', 'text': "happen? And what's going to happen with"}, {'start': '610.560', 'end': '618.120', 'text': 'her hearing loss? And what about her one'}, {'start': '614.120', 'end': '621.839', 'text': 'kidney? Will she ever somehow become'}, {'start': '618.120', 'end': '624.240', 'text': 'independent? And most of all, the'}, {'start': '621.839', 'end': '628.600', 'text': 'question that no special needs parent'}, {'start': '624.240', 'end': '631.360', 'text': 'wants to voice. Will I uple my'}, {'start': '628.600', 'end': '634.160', 'text': 'child? Those and more are the questions'}, {'start': '631.360', 'end': '637.360', 'text': 'that accompany me in my everyday life.'}, {'start': '634.160', 'end': '642.160', 'text': "And what the Green Lantern didn't get"}, {'start': '637.360', 'end': '645.200', 'text': 'right is that many times willpower is'}, {'start': '642.160', 'end': '647.920', 'text': 'not going to help you against fear'}, {'start': '645.200', 'end': '650.880', 'text': "because it doesn't matter how much you"}, {'start': '647.920', 'end': '654.200', 'text': "want things to get better. It doesn't"}, {'start': '650.880', 'end': '657.360', 'text': 'matter how much you advocate, plan,'}, {'start': '654.200', 'end': '660.880', 'text': 'organize, coordinate the efforts, look'}, {'start': '657.360', 'end': '664.240', 'text': 'for answers. The life of a special needs'}, {'start': '660.880', 'end': '668.320', 'text': 'parent is a roller coaster where most of'}, {'start': '664.240', 'end': '672.200', 'text': 'the times you feel completely powerless.'}, {'start': '668.320', 'end': '675.839', 'text': 'You live in survival mode and you'}, {'start': '672.200', 'end': '681.279', 'text': 'witness your kid being dragged down by'}, {'start': '675.839', 'end': '681.279', 'text': "this syndrome that they didn't ask for"}, {'start': '683.000', 'end': '689.760', 'text': 'deserve. Willpower will not supercharge'}, {'start': '687.040', 'end': '691.240', 'text': 'you against fear.'}, {'start': '689.760', 'end': '696.560', 'text': 'Love'}, {'start': '691.240', 'end': '698.920', 'text': 'will love nurtures my soul every single'}, {'start': '696.560', 'end': '702.320', 'text': 'moment I spend with my'}, {'start': '698.920', 'end': '704.720', 'text': 'child. Love makes me patient every'}, {'start': '702.320', 'end': '708.079', 'text': 'single time I have to drive her back and'}, {'start': '704.720', 'end': '711.279', 'text': 'forth to the many weekly therapies in'}, {'start': '708.079', 'end': '715.440', 'text': "Sydney's traffic."}, {'start': '711.279', 'end': '718.720', 'text': 'Love makes me reach out and ask for help'}, {'start': '715.440', 'end': '723.200', 'text': 'and find beautiful people who will do'}, {'start': '718.720', 'end': '726.480', 'text': 'their best to listen and support us even'}, {'start': '723.200', 'end': '729.200', 'text': 'if most of the times they have no clue'}, {'start': '726.480', 'end': '732.399', 'text': "of what we're going through."}, {'start': '729.200', 'end': '736.079', 'text': 'Love between me and my husband is saving'}, {'start': '732.399', 'end': '739.200', 'text': 'our marriage. Because when we decided we'}, {'start': '736.079', 'end': '740.600', 'text': 'were ready to become parents, we did not'}, {'start': '739.200', 'end': '744.320', 'text': 'sign up for a'}, {'start': '740.600', 'end': '747.920', 'text': 'syndrome. And yet we chose and we are'}, {'start': '744.320', 'end': '753.160', 'text': 'choosing every single day to cope with'}, {'start': '747.920', 'end': '753.160', 'text': 'all the challenges and fears together.'}, {'start': '753.519', 'end': '759.560', 'text': "It's not an easy life, but it's"}, {'start': '756.480', 'end': '762.839', 'text': 'definitely special and filled with'}, {'start': '759.560', 'end': '767.720', 'text': "love. And I couldn't be more proud of my"}, {'start': '762.839', 'end': '772.680', 'text': 'daughter, who to me is the greatest'}, {'start': '767.720', 'end': '772.680', 'text': 'superhero of all universes.'}, {'start': '779.920', 'end': '785.600', 'text': 'read blunt and bug'}, {'start': '781.880', 'end': '788.959', 'text': 'me. I will end my story now uh by'}, {'start': '785.600', 'end': '791.120', 'text': 'addressing all of you guys. Please,'}, {'start': '788.959', 'end': '794.000', 'text': 'every single time you encounter someone'}, {'start': '791.120', 'end': '797.839', 'text': 'with disabilities or complex needs,'}, {'start': '794.000', 'end': '801.360', 'text': 'please remember that most likely that'}, {'start': '797.839', 'end': '804.800', 'text': 'day they had to recharge their ring many'}, {'start': '801.360', 'end': '808.880', 'text': 'times to face yet again another deal on'}, {'start': '804.800', 'end': '810.800', 'text': 'their path. And every time you listen to'}, {'start': '808.880', 'end': '813.519', 'text': 'them, every time you help them and'}, {'start': '810.800', 'end': '816.560', 'text': 'support them, you are going to recharge'}, {'start': '813.519', 'end': '819.120', 'text': 'their lantern with love. and he will'}, {'start': '816.560', 'end': '823.120', 'text': 'forever be one of the good guys in the'}, {'start': '819.120', 'end': '823.120', 'text': 'mountain verse. Thank'}, {'start': '830.839', 'end': '837.200', 'text': 'you. Wow. Wow. Wow. Wow. Wow. Give it up'}, {'start': '841.639', 'end': '846.959', 'text': 'for watch journey since her pregnancy'}, {'start': '845.120', 'end': '849.440', 'text': "and I've been holding my breath the"}, {'start': '846.959', 'end': '852.959', 'text': "whole way. And I'm telling you, if you"}, {'start': '849.440', 'end': '855.120', 'text': 'follow my kabuki girl um with the K, you'}, {'start': '852.959', 'end': '858.240', 'text': 'will see what I mean. This woman and her'}, {'start': '855.120', 'end': '862.000', 'text': 'husband and her daughter, unbelievable.'}, {'start': '858.240', 'end': '865.279', 'text': 'Like h incredible, inspiring, amazing'}, {'start': '862.000', 'end': '867.839', 'text': 'human beings. And personally, I believe'}, {'start': '865.279', 'end': '869.920', 'text': 'um souls choose their parents. And I'}, {'start': '867.839', 'end': '872.399', 'text': 'think she chose you guys because she'}, {'start': '869.920', 'end': '875.279', 'text': 'knew you guys would just have her back'}, {'start': '872.399', 'end': '878.480', 'text': 'and just let her thrive in this world.'}, {'start': '875.279', 'end': '880.320', 'text': "So, I believe she's chosen you. And I so"}, {'start': '878.480', 'end': '882.079', 'text': 'appreciate you sharing your story with'}, {'start': '880.320', 'end': '885.079', 'text': 'all of these amazing people. Give it up'}, {'start': '882.079', 'end': '885.079', 'text': 'for'}]