Laines World

I don’t think that anybody that’s not a medical parent and especially a bereaved parent will understand how often we think about our kids dying. It’s constantly in the back of our minds. Every day. Every hour. Almost every time I look at him.

We need to talk more about how strange it is to stop being a medical mom overnight.

One day your entire life revolves around medications, tube feedings, suction machines, therapy appointments, oxygen levels, specialists, insurance calls, adaptive equipment, emergency plans. You know medical terminology better than some professionals. Your hands move on autopilot changing trachs, drawing up meds, lifting, transferring, comforting. You are needed every second of every day.

And then your child dies… and suddenly the world expects you to just exist normally again.

But you don’t know how.

Because caregiving wasn’t just something we did. It became who we were. Our routines, our purpose, our identity, our nervous systems. We lived in survival mode for so long that “normal life” feels foreign afterward. Quiet feels wrong. Free time feels wrong. Even rest feels wrong.

People see the grief, but they don’t always see the loss of purpose that comes with it too. The deafening silence after years of machines, medications, schedules, and constant care.

You spend years learning how to keep your child alive… and no one teaches you how to survive after them.

Thank you, Chance Taylor, for making me a mom. I miss you and who you would be, every single day.

We hate putting this out there, but have come to realize that it’s necessary to ask for help. While we got 8 amazing months at home, we are still behind on bills from our previous admission. With Laine being admitted again right now, that puts us even more behind. We don’t get paid to be his caregivers while he’s admitted. We spent most of the beginning of our day door dashing, but with gas prices right now it’s barely worth it. Thanks for reading and understanding. I hate that we’ve had to ask for help so much…

Haven’t had to do something like this in a long time but as you all know by now we’re back at luries for the 9th or 10th admission in a year. I absolutely hate asking but I want to give Justice the Mother’s Day she deserves.

Happy Mothers Day! 💐

Laine and his nurse surprised me with this sweet gift bag while Josh & I stepped out. It’s so bittersweet being here. We genuinely love these people… Julia, one of our favorites, stopped by to see us. There have been a few people that have come by to say hi already and it’s still the weekend! I’m sure we’ll be seeing even more familiar faces tomorrow.

So far we’ve found that he does have a UTI. I wouldn’t be surprised if that’s all that it was that’s causing all this drama. It wouldn’t be the first or second or maybe even third time that we’ve been admitted over a UTI. It’s exhausting for sure, but we’re hoping we’ll be outta here in no time if that’s all that’s going on.

Thank you all for your thoughts and prayers! 🫶🏼

Almost 8 whole, continuous months that we made it at home! That’s something to be proud of. We know we will still run into hiccups every once in a while. Lets hope this is his only admission for the rest of the year! 🤞

He was requiring 100% o2 support here & there and occasionally needing to be bagged. He’s been off for a few days now, but we aren’t comfortable with having to bag him up from the 70s, no way Jose. We got him stable and made sure he stayed stable enough for us to safely transfer him to Luries.

I’m grateful we were able to avoid an ambulance and Rockford hospitals. I’m grateful we didn’t wait any longer. I’m grateful to be here. Pray for our boy please. It shouldn’t be a terrible stay (knock on wood!!)

Laine loves his new baby uncle!

We went to see his rehab doctors today. They recommended and put in a referral for intensive therapies, as they always do.

So, we will be spending our third summer in a row out here.

Last summer he was inpatient & bedridden in the ICU the entire summer. The summer before that, however, he spent doing intensive therapies & we all had lots of fun with it. It feels bittersweet. We were looking forward to a summer at home, but we’re so excited to see what he will accomplish with these therapies. He’s had some regression this past year with his long admissions, so we’re hoping to get him back to where he was (give or take). We can’t wait to see his therapists again! & now that we have a van, it’ll be so much easier going home once a week or so.

New summer pictures and memories coming soon!

My baby brother & Laines new uncle is here!! So excited to meet him & for Laine to hold him. They’re gonna have the best snugs

Super excited our automatic gate opener finally got delivered! The instructions are pretty unclear and might take a few years to figure out how to use it but what a relief this will be.