“We were told, ‘Bring him back in a few weeks to re-test.’ When Cooper was diagnosed as deaf, I was pissed. I refused to even say the word for a few weeks. I hated it, as if hating a word have any effect on what we were going through. Now I don’t see it when I look at him. I see my perfect, perfect baby.”
‘He didn’t pass his mandatory newborn screening.’ I was angry we hadn’t gotten the child we’d planned for. Woman gives birth to son with Waardenburg syndrome, ‘he teaches you more than you ever imagined’
‘Mama, this is the guy from the airplane I made friends with!’ She called Greg her BFF. Only 4 months later, she was dead.’: Mom wants others to know the impact of ‘difference makers’ after daughter dies from heart surgery
“Our precious Amie was approaching her next open heart surgery. ’Wanna play hooky from school?’ She excitedly said, ‘Yes!’ I secretly handed the next note to one of the most amazing difference-makers ever. He wanted to introduce the ‘celebrity’ on board. The look on her face was beyond amazing. This would be the last adventure we would ever be able to take together.”
‘What happens to my girl when society realizes it’s not ‘cute’ anymore? How do I make people see the beauty I see?’: Mom to daughter with autism urges us to challenge our idea of beauty
“When she was 2, she didn’t talk. She said one word, ‘Hi,’ over and over. I was worried, but most agreed it was so cute. At 4, she stuffed food in her mouth messily. Gosh, it was cute. At 6, she was diagnosed. Everyone agreed she was still cute, but followed with smiles of pity. Now, she’s 11. She picks her nose, sits with her legs wide open. She has body odor, speech delays, and drools. What happens to my girl when society decides it’s not ‘cute’ anymore?”
‘All they see is ‘locked in his room’ and immediately jump to ‘savior’ mode.’They call CPS without knowing the damage it can do.’: Mom of bipolar, autistic son advocates for mental health, ‘Each victory makes us stronger’
“He has been up till 2:00 a.m. every night the past four nights. I can see the exhaustion in his eyes, but his brain is on rapid-fire mode. I feel like a horrible mom sitting on the floor in the hall outside his room, which is locked, listening to him.”
‘Is this normal?’ My husband watched me jump into that black hole in an effort to pull her out.’: Woman tells how autism affected her marriage, ‘I could only see what was visible in my autism-centered world’
“She withdrew into her own world. I would stand right in front of her, screaming her name. She didn’t even acknowledge I was there. The doctors called it autism. It was still up to me to figure out how to make it better. I pushed everyone away, including my husband. A mother is only as well as her sickest child.”
‘I have a live-in nanny and I’m a SAHM. People enjoy bashing that. I can be in bed by 8′: Stay-at-home mom of autistic child says, ‘I have MS but MS does not have me’
“I can look drunk. I may walk into a grocery store and barely stumble out. I was even accused of thinking I was ‘better than everyone else’ or I ‘don’t have children’ because of what I do for my husband. I choose to stay positive.”
‘Out of left field, the man asked, ‘Ma’am, will she ever be normal?’ Fighting back tears, my 5-year-old climbed on A.J.’s wheelchair and look him straight in the eye.’: Woman adopts child with cerebral palsy, ‘Life has never felt more complete’
“I got the phone call that would change our lives forever. ‘Her mother was found deceased this morning.’ We asked, ‘How would y’all feel if A.J. stayed with us forever?’ The two girls’ bond is like I have never seen. She doesn’t see A.J as ‘different,’ she just sees her baby sister. I don’t think any of us could imagine life without her.”
‘I have to remove his top lip.’ It had turned black. Half his face was gone, it reminded me of a zombie.’: Boy battles leukemia, mouth infection, now in remission and mom says ‘we still continue to trust in God’
“A nurse grabbed me, saying, ‘Pray for your son NOW, and pray he makes it.’ She asked me if I needed to leave the room. ‘No, I’m NOT leaving my son.’ Every day I felt like I was dreaming. I don’t know how I was still standing.”
‘Tell me if it’s a boy or girl! Why does a doctor have to call me?’ This news changed our entire life.’: Mom is pressured to terminate Down syndrome baby, realizes she made the right choice and feels ‘guilt for fearing him’
“‘So, just because he has Down syndrome, you offer termination?’ She became quiet. ‘I will have to talk to the doctor and have her call you.’ Ummm..say what?”
‘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’
“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.”
