Needless to say, it's taken me four months to get back here and update, but here I am, finally!
Griffin was discharged from our local hospital in mid-August, and has been at home growing and thriving beautifully ever since. I don't tend to be a superstitious person by nature, but I am hesitant to share the wonderous news for fear of jinxing it: this is now the longest we have ever been home! (I'll just sit over here crossing my fingers, saying a prayer, and doing a rain dance while throwing salt over my shoulder after throwing that out there into the universe.)
It's been such a wonderful time filled with so many beautiful moments, making memories, taking ridiculous amounts of photos and videos, and of course, lots of doctors visits. It is so hard to describe the depth of gratitude we have for this stage in our journey. It's overwhelmingly beautiful and wonderful and all the good things in the world. It's nice to feel all the other things out there after feeling all the things we had been for the first 5 months.
But there are two sides to every coin, right? While I am everlastingly grateful to see him thriving, home, and doing so, so well (and I really cannot overstate that) - it's also been a HUGE adjustment and learning curve for both myself and my entire family.
So, for the past three months, I have been learning how to be the mom of a kid like Griffin who gets to be home. I have been establishing care with all 13 of his specialists and providers; scheduling and arranging appointments for doctors, specialists, home health nursing, feeding therapy, and physical therapy; learning how to navigate the world of Medicaid and private insurance; developing a routine that ensures all meds, feeds, exercise, appointments, naps, playtime, and cuddles fit into our day as needed; learning how to get out the door in a reasonable amount of time with an infant who requires tube feeds, NG administered medications regularly throughout the day, and oxygen (along with the normal baby stuff like diaper bags, change of clothes, and stroller haha). I've also been learning how to balance being the mom of a busy almost-teen, attentive spouse and partner to my husband, housekeeper, cook, errand runner, and still practice self-care and keep something of myself alive, well, and all my own. It's been no small feat, let me tell you.
“I think that little by little I’ll be able to solve my problems and survive” – Frida Kahlo
But we are slowly and surely getting there, and now that things are starting to slow down and a routine developed I'm finally getting back to the blog. It got a facelift, I added a page that I hope will be a great platform for families like ours to come together and seek advice, share tips, and just be there for each other in all the good and bad days that come with a life like ours; and I will also be adding a page that shares some recipes and cooking tips I've found along the way that helps when you've got a busy schedule and really no time for four-course home-cooked meals anymore, and/or you're just exhausted and the thought of cooking makes you want to throw up or crawl into a closet and hide until it's bedtime (not that I would know these things from personal experience....) I have also been talked into sharing our story on Tik Tok, so stand by for that (and here's to hoping I don't embarrass Griffin too badly). Oh, and I decided to write a book/survival guide, so there's that too. I might get everything accomplished in the next 30 years.
So lots of things are in the works, a lot of things learned over the past four months and even more adjustments made, a lot of messes and tears, and (most importantly) a lot of blessings. It's been a long and loaded road, but four months ago I was not so sure we would get any of this at all, so to say I feel grateful and blessed, well, that's just never going to be enough to express it all. But, I'm going to do my best every day to try and express it, and I will never take a moment of this life in Griffinland for granted.
What a wonderful, fearful, beautiful ride it's been and it is yet going to be...
Photo Credit: Matej from Pexels
Comments