“I was using a breast pump, and noticed a lump. I shrugged it off. I took an electric toothbrush, holding it on the lump trying to break it up. I was stressing about being able to breastfeed two little humans. The office was empty. Everyone had left except for the doctor who was about to read the results. All I could say was, ‘What??’”
‘I was 25, pregnant with twins, and had a 21-month-old son. After the babies were born, I noticed what I thought was a Clogged Milk Duct from breastfeeding. Then my life turned upside down.’
‘My husband and I watched in horror. ‘Don’t worry, he’s going to be okay.’ I nodded, but all I could think was, ‘NO, my newborn just had heart surgery, NONE of this is okay.’
“Every day I wonder – is today the day we get the call there is a heart for Max? Is today the day my son gets a second chance at life? He is still fighting hard. We refuse to give up on him.”
‘Are you prepared to take care of someone with an EXTREME disability?,’ she asked while practically rolling her eyes. It wasn’t a question. It was more of an accusation.’
“His head was shaped differently, his ears were low set and he had an extra thumb on his hand. ‘Did anybody see this?,’ I asked. My midwife nodded.”
‘They called for another baby!’ Henry and his twin brother were born micro preemies. Sadly, his twin passed away. Henry was put into foster care. I stood there staring at the message.’
“We got the call when he 10 months old. At the time, my husband and I were fostering a baby girl suffering from shaken baby syndrome. We had already adopted 3 children, all who have special needs. I waited for my husband to get home and met him at the door.”
‘He was yelling down the hospital halls, ‘Best day ever!’ As happy as I was for my son, I felt such sadness for my daughter. She was diagnosed first.’
“Both of our babies had cancer. Even before their diagnoses, they were inseparable, best friends. We sometimes joke, he couldn’t even let his sister go through brain cancer without him.”
‘I sat on the line stunned. ‘There are only 34 cases ever on record. He is as rare as they come.’ I peered in at him and thought, they were wrong, somehow this was just a fluke.’
“I was anxious to make my way to the NICU. I walked into the very room our daughter had been in and instantly knew our situation was much different than before. The doctor didn’t waste a minute of my time trying to sugar coat the situation.”
‘When you hear, ‘twin one is fine, but…’ your life is about to change. When I finally saw him after his birth, I could hardly process the absence. It was a blank, featureless canvas.’
“When I woke hours later, my partner and I were met by the serious face of one of the pediatricians. There is no way to explain how I felt at that moment, other than devastated. I was convinced I must have done something during my pregnancy to cause this.”
‘Before the doctor punctured my belly, my husband looked to me. ‘Do you wanna know?’ My fairytale pregnancy was being ripped apart.’: Mom’s devastation over shocking Lymphatic Malformation diagnosis leads to ‘pure bliss’
“I had no clue what to feel. I was so devastated that something was wrong with our perfect little baby. The only thing running through my mind was, ‘Please don’t take my baby.’ I never once cried seeing how severe his malformation was. I just kept thinking, ‘That that’s my baby boy. I was so in love.’”
‘He looked at me screaming, helpless because he felt they were torturing him. All mommy could do was hold him tight, but not stop them. The room caved in on me. I wasn’t ready.’
“I took him to his pediatrician with no knowledge of what was to happen later that evening. The doctor walked in, looked at his stomach bulging out on the left side, and told me to go straight to the Children’s Hospital.”
‘I’ve been hiding our family’s ‘secret’ for years. I have been silent. Masking our smiles. Faking OK. A complete nightmare. I am so sick of living in fear.’
“The officer had actually committed suicide and faked his own murder. This brought out things in Ty I had never seen before. Our family has been in nonstop crisis.”
