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Rocky, 16 months old.

Rocky has taught me so much over the past sixteen months. We knew that having a fourth baby would change our family, but obviously didn't anticipate his diagnosis of Tuberous Sclerosis. I almost feel foolish knowing that I had wished away moments in the past. That I had wasted time. That I thought I was cherishing each day, but really truly wasn't. I'm sure that I sound like a broken record by now, but it's true. I was never living as simply or as intentionally as I had thought.

Looking back on my Instagram account even, everything was so fussed with. I had elaborate birthday parties for the kids, I never posted photos of myself with the kids if I didn't like how I looked in them. I had constant room makeovers to blog about or share; just trying to keep up with the latest trends. I posted selfies with really pointless quotes under them. Goodness, so much wasted time. I'm so thankful that Rocky has shown me what truly matters in life. Of course, that doesn't mean that I'm only showcasing incredible things and that my life is more meaningful now, I just mean that I appreciate the really small things now. Like, the really really small things. I live each day with intent. There is no "next time" or "one day". I have now. That's it.

Tiny baby grins used to be taken for granted, and now I know that they are to be treasured. Toddler babbling was sometimes hushed in the past, and I'd give my left arm for Rocky to babble. First steps made me panic over babyproofing and cleanliness, when I should have taken more videos of those little toddling legs. Really, everything I used to complain about or stress over should have been enjoyed and appreciated.








I love that he has slowed me down. That I allow him to nap on me instead of a bed every chance I get. That I enjoy making his meals and putting thought into every ingredient. That I focus on putting him in clothing that is either 100% organic or made by small shops (or both!). That bedtime is only a word and not a routine. That I thank him for every.single.smile. because I know that some days he may not smile at all. That every time he looks into my eyes, I make sure to tell him that he is loved.







Living in the moment allows us to appreciate everything that as parents, we once overlooked. Even the tiniest of details, like making sure that his clothing is as soft as possible against his skin, is taken into consideration now. (Burt's Bees Baby is one of my favorite brands right now since we can focus on nurturing him naturally. Their organic cotton clothing line is so cozy, and really makes those baby and toddler snuggles extra special.) Soak up those cuddles every chance you get. I know that we sure do.

I'll be cherishing these little outfits for years to come knowing that his sixteen month photos were taken in them. I love knowing that he tries so hard to reach new goals and milestones right now, and that I have the photos to look back on. Watching him learn and explore is our daily gift.

Life is so beautiful if you peel back all of the chaos and take it for what it is. Life is really truly all about love.



Under construction.

It's 3:09 AM and I think I have broken my blog. What was supposed to be a quick blog makeover in my spare 30 minutes for the day, turned into a bit of chaos. Please excuse the madness.

Me and my good ideas.

All the eye rolls.

A little Rocky update.

I feel like everything I post on social media is so confusing. One day I post a smiling baby* photo, and the next day I post an update asking for prayers and good vibes.

*Rocky is referred to as the baby; probably both because he is the baby of the family, and also because he doesn't walk or talk at 15 months old. Yes, according to age, he is a toddler, but I'll likely always refer to him as a baby.

So, the thing with Tuberous Sclerosis is that every single day is different. The disease is kind of like a combination of all of the really Big Scary Diseases. Brain tumors, heart tumors, seizure medications, blood tests, ekg scans, eeg scans, skin lesions, vision issues, nystagmus, kidney problems, etc- this poor guy has his entire body fighting him. It's very rare to have all of those things in-sync. So some days, he may only have one or a few of those things causing issues; resulting in sweet baby photos. Other days, he may have many of those things causing issues, resulting in doctor's appointments and hospital visits.

Every.Single.Day.Is.Different.

Right now, his seizures are still under control (9 months! praise hands emoji) although he has some neurological issues that sometimes make me think that a seizure is around the corner. We are hoping that his seizures will stay away under his current medications.

He is making more cooing sounds. Sometimes he will even yell or shriek! From a non-verbal child, any noise is seriously music to my ears. If he only ends up screaming or cussing me out, I would probably be thrilled. Funny to think that I took babbling and talking for granted with my other three children. This little guy makes me appreciate everything; and I mean everything.

At 15 months old, he can crawl and pull himself up to a stand. He will cruise the furniture at a very very very slow pace. (We compare him to a chameleon or a sloth when he is in motion. His movements are very intentional and deliberate, and he moves very slowly while he is focusing on the task at hand.) He loves to play pat-a-cake, and he will grab my hands randomly and clap them together for me to play. He also loves peek-a-boo! He's obviously behind now in many aspects compared to his peers, but being the last baby, it's been so enjoyable to savor this baby stage for so long.

We have no doubt that he will catch up one of these days. And until then, we will continue to fight for the very best care for him, and love him to pieces.