02/04/2026
Surgery #8 for our brave girl today. Please pray for her! No matter how many times I see her come through, theres always a knot in my stomach.
I reflected as I nursed the baby in the middle of the night that, while we may get the most sympathy on surgery days, the hard days feel like…well, most days.
I’ve struggled to broach this topic because I don’t want to be perceived as a complainer. Many people won’t get it because they’re not living it. But I hope those who read this will approach with a listening heart.
Special needs parenting means overwhelming amounts of tasks: speech, occupational and physical therapy appointments. Never-ending phone calls. Appointments at all NINE specialist offices (I counted before I wrote this!), keeping authorizations current, letters of medical necessity, medical supplies ordered, nurse and insurance assessments, IEP meetings, orthotic fittings… it’s more than a full-time job.
That’s in addition to 6 G-tube feedings a day, sleep issues, and balance issues which make adequate rest impossible and getting around difficult and time-consuming. And then the odd surgery, or 8.
Taken separately, it’s not too bad. Taken together, five years of this has left me so, so weary.
I share this because I had no idea- NO IDEA- before I became a special needs parent, what this journey would be like. If someone had tried to tell me, I would’ve glibly thought “why is she complaining about making a few phone calls? It’s not that hard.”
I see people’s eyes glaze over when I try to explain, and honestly, I get it cos I used to be the same way. It’s like I’m speaking a different language. And it’s isolating.
I love my girl so much I’d do it all again. She always amazes me with her strength. She’s taught me so much about love.
If you know a special needs parent, give them a hug. They may be dealing with things they’re struggling to give a voice to. So many people have supported me in the past here, and I’m more grateful than you know. 💕
If you want to leave a comment below for Nora, I’ll read them all to her later when she’s awake and she’ll be thrilled.