“When you ask a special needs parent how they’ve been and they roll their eyes, yawn, and say, ‘Eh, it’s been rough, honestly.’ It might be our pride or that we feel guilty. If you have been wondering how you can help, know that it is simple. Show up. Keep showing up.”
‘Please, sit with us. Text us. Stop by and insist on taking our kids for the day because I promise we won’t ask for help. But mama, we need it.’: Mom says all a special needs parent needs is for you to ‘show up’
‘My spouse’s needs were put to the side. I focused solely on my child’s needs. So, we ended up getting a divorce.’: Woman grows apart from husband after daughter’s rare genetic disorder diagnosis, enters 40s with ‘my best foot forward’
“I got married, moved to a different city, had a baby, moved back to my hometown, made new friends, lost old ones, and got divorced. I was given news that would change my life, my daughter’s life and my ex-husband’s life forever. She was diagnosed with a rare genetic disorder. The expression, ‘you need to put your oxygen mask on first,’ simply does not apply. My husband and I got divorced.”
‘We need to talk. Your baby’s head is BIG. His fingers look like a starfish.’ WHAT? He passed the Kleenex. I lost it.’: Mom births son with Dwarfism, ‘he was made special on purpose’
“I thought he was joking. ‘Ohhhhh, I was hoping to walk in and see that you two were just very short. Have you ever seen the little people shows on TV?’ What the heck? He was convinced our son was a dwarf. He double checked measurements. He was actually serious! ‘What will our friends think?!’ I couldn’t breathe.”
‘The baby is going to suffer. We can take care of this right now.’ They told me to abort him.’: Mom says she came to ‘peace’ with her son’s Down Syndrome diagnosis, he became a ‘warrior’
“’I don’t know what’s wrong, but please fix him!’ She was treating my son like a mole that could simply be removed and thrown in the trash. I knew I had to protect him. Handing him over to the surgeons knowing I may never see my baby boy again was the hardest thing I’ve ever done. We are better people because of Eli.”
‘Addie will never walk,’ they said. She took 4 steps at a time. ‘She is WALKING!’: Mom says her daughter is an ‘incredible miracle’ with a ‘fighting spirit’ despite Hydrocephalus diagnosis
“You don’t know God! You don’t know what He can do!’ I know doctors have knowledge, but maybe, just maybe, God has other plans. And they were wrong! I am proud of Addie and her fighting attitude.”
‘What drugs did you take while pregnant?’ I locked us indoors and REFUSED to bring her out.’: Mom describes daughter with limb difference as ‘devastating’ at first, then ‘her biggest joy’
“’What a freak. Stay away from that little weird girl.’ People can be cruel. But my husband said, ‘Look at her. You have a beautiful daughter.’ She gives her siblings a run for her money. She is different, not less.”
‘He has what? Will he walk? Talk?’ I mourned the life we were supposed to have.’: Mom gave up on ‘life she imagined’ as son battles undiagnosed genetic disorder, eye condition
“The more severe cases pass away by the age of 1. ‘What? Pass away? Not my child.’ I was devastated I wasn’t going to have the life I imagined. But there is such power in accepting this new life.”
‘What the hell did you do!’ He looked at me. ‘You’ll likely be planing a funeral.’: Mom describes years of ‘medical issues’ with son, but he still ‘beats all odds’
“’We did find a few things wrong.’ They rushed him into emergency surgery. ‘There’s something wrong with the baby’s heart.’ Once again, we were faced with the possibility of not bringing him home. Once again, he beat all the odds and baffled all the doctors.”
‘The doctor sat down and began to cry. ‘It could be nothing,’ she said. But we knew it was something.’: Mom describes shock of finding out her son’s ‘life-changing’ genetic disease
“One of the nurses came in the room and said to me, ‘If you guys were my kids, I would tell you to go straight to the children’s hospital. Something is wrong with your baby.”
‘I have 2 bio kids, 2 adopted, 3 special needs foster children. I wanted nothing to do with the ‘white picket’ American Dream.’: Special needs mom cherishes the ‘beautiful chaos’ of ‘meeting the needs of others’
“‘Your baby has a large mass. Prepare for the worst.’ I was learning how to be married, live in a city where we knew no one, being first-time teachers and parents to a baby who may or may not be okay. The older, wiser folks warned us to slow down. And yet none of this chaos ever silenced the call we felt to pursue adoption and fostering. Our life is absolutely crazy. But I look through my dark-circled eyes at this beautiful mess and know I’m right where I need to be.”
