“I don’t let very many people into our lives, mostly because I’m spent. And one of the reasons is because of things like ‘at least.’ When you ‘at least’ me as a complex parent, I feel minimized. I feel unheard. I feel compared. If a person gives you a glimpse of their challenges, honor their experience. Validate them. Meet them where they are. And if you can’t think of anything else to say, ‘Can I get you coffee or tea?’ always works.”
‘At least he doesn’t…’ As a special needs parent, I hear this all the time. Each one takes a little slice out of me I can’t fill back in.’: Special needs mom urges you to ‘validate’ those who ‘give you a glimpse of their challenges’
‘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.”
‘He was so nervous. From the darkness of the hallway comes a little curly haired boy, weary of all these people.’: Couple adopts twin survivors of shaken baby syndrome, loses son just 2 years shy of being in his ‘forever home’
“We heard about twin boys with Shaken Baby Syndrome. It was a super stormy morning, we ended up having to pull off the interstate. I was dying to get to them. Everyone held back tears as long as we could. Malakai was scared. He had no idea who we were. He’d hardly look at my husband. He passed away less than 6 hours after saying goodbye to his siblings. I still would have driven to a teeny tiny town in the pouring rain to pick he and his twin up to bring them to their forever home.”
‘A 20-year-old suddenly appeared on our doorstep. He needed a family just as much as we needed him. His foster mom texted me, ‘I’m no longer able to provide care for him.’
“Joe had lived with a caring foster mother for the past 7 years. He has cognitive disabilities and required ongoing care, even though he was now an adult. I emailed friends, ‘I feel sad he is not with us.’ Less than an hour later, I got her text. We had less than a day to decide.”
‘I was told it was the ‘Cadillac of disabilities.’ His pediatrician even said, ‘Out of all the heartbreaking disabilities, his is also heartwarming.’ Down syndrome isn’t easy. We ARE special.’
“I’m here to call us out on all of our mild-mannered modesty. I’ve realized we ARE special, and we deserve that title. No, not everyone can do it. You are different. Your child is different. I am tired of wearing the martyr mask with an ‘aw shucks’ and a ‘not little ol me.’”
‘My doctor held my hand and started, ‘Tami…’ In that moment, I knew. I couldn’t breathe because I knew. Or at least I thought I did. My heart exploded with relief!’
“We were walking out of the house when a feather floated right in front of us. As we sat enjoying our morning coffee, another tiny feather made an appearance. On the drive home, I kept thinking … two feathers … what does that mean? But I had a hunch. I went straight to the bathroom and found a pregnancy test.”
‘He is coming!’ I was alone. I was in denial. My husband was deployed. I couldn’t possibly be giving birth without my two partners present.’
“Is my baby boy okay? All I wanted was my husband. Waiting for him to arrive at the hospital felt like a lifetime. When he arrived I collapsed into his arms sobbing. He asked what was wrong, but I could barely get the words out.”
‘Our beautifully ‘normal’-looking child just cussed us out and threw a chair. That isn’t your fault any more than it’s mine, or his really. He isn’t a problem, but he is HAVING a problem.’
“When Karen says, ‘Ugh, my kids are so hard! They just called me ‘mean’ in Target. I was so embarrassed!’ I want to shake you and tell you how easy you have it and to hug your kids because they are freaking angels!”
‘There’s no way! She’s crazy. I’d know if my baby had a genetic syndrome.’: Woman discovers son’s heart condition after chance social media message
“The doctor squeezed his little heart between his fingers. He came back, but my baby didn’t look like my baby. He was blue, but pale at the same time. Machines beeped. Alarms sounded. I looked it up to see other children’s pictures. You know that feeling where you’re so shocked you could cry, but nothing comes out? That’s where I was. I wanted to scream.”
