Inchstones. How I wish I had heard this term two years ago when we started this journey.
When you’re having a baby and especially during that child’s first year, you could drown in the amount of times you hear the word, “milestones”. It’s freaking conversational even. I guess you don’t know what you don’t know…however, I know and am so much more sensitive about this word being used at me since Jack was born. Jack didn’t roll over until he was almost 6-months-old. At 5 months old, I had to remind the few people who were actually allowed to hold Jack that his head should be supported like a newborn. When we were told by a Neurologist that Jack was going to die, I even became pissy about cute baby clothes. I absolutely loathed those stupid Carter’s Baby’s FIRST Christmas/Halloween/Whatever outfits. I distinctly remember having a little meltdown to my mom about those outfits one day when we still thought Jack was dying. I was so mad at those outfits and said, “I wish they made Baby’s ONLY Christmas outfits”.
Sorry to all those who think I handled Jack’s medical issues with grace. I do try, but the sadness and bitterness creeps in, even now. I have to actively work on keeping the bitterness at bay. I will say that being a part of the powerful special needs community online really helps me keep the shitty thoughts out. That being said, I want to give a shout out to an amazing non-profit organization helping medically complex/special needs kiddos: Go Shout Love (https://goshout.love/). I have only been following them for a few weeks, but the organization has already touched my heart. I read a post about the kiddo of the month, Sofia, and how her family celebrates her inchstones as she goes at her own pace. Oh man, I loved that so much.
I have always silently celebrated inchstones, but didn’t know what to call them. We’ve had such a hard road that I’m always waiting for the other shoe to drop. I feel like I will jinx it if I celebrate a few words or a few steps here and there. Many times Jack will make huge strides in one area (PT for example) only to fall farther behind in another area (Speech for example). Just because Jack does something one time does not mean he will repeat it. Seriously, this makes it challenging and confusing to celebrate Jack’s little accomplishments. I know people think I am so hard on Jack because I don’t stop and celebrate his inchstones, because instead I am pushing him on to that next one. But Sofia’s story has reminded me to slow down and celebrate Jack’s inchstones. They are meaningful, they are important, and they don’t come without blood, sweat, and tears (hopefully not blood too often), so let’s celebrate!!
We will let Jack take the lead and we will go at his pace, reaching both inchstones AND milestones.
If you want to learn about Sofia, Go Shout Love, or purchase one of these amazing “Hang on to Hope” Sloth tees to support Sofia, visit (https://goshout.love/). I found a little inspiration here so thought I would share & shout love for Sofia! Look, no hands!!! ❤