Max and Addie's developmental issues are among my least favorite topics. I tend to much prefer to talk medical stuff to milestones. I would rather talk to you about tube feeding than about how Addie is doing with talking. Explaining peritoneal dialysis is way easier than explaining that at nearly two Max can not hold his head up. Developmental milestones can be a sensitive issue for any parent. I know I have friends who get worried when their perfectly normal child just doesn't do something on the same timeline as their friends kids. And in the world of Social media, we always know when everyone's kids are doing things so it can lead to this panic of why isn't my baby doing what my Facebook friends' babies are doing?!?
So I think the concern over development is far from unique to me. And really, I try not to get hung up on it. After all, developmental milestones are important to help you catch if something is wrong and we already know why Max and Addie are doing things differently. And developmental milestones are designed with a normal childhood experience in mine and not one where the child has had 13 surgeries and nearly a full year of hospitalization by age 2. It would be ridiculous for me to expect my children to do everything just like their healthy peers when their bodies have had other priorities. I don't think about milestones and worry or stress about them because I know our situation is unique.
But, I still want to see them hit these milestones and I still feel such relief when they do. Second to wanting Addie transplanted and healthy, I think there are few things I wanted like I wanted to see her walk. I knew all the reasons why she wasn't walking but when your 18 month old is still army crawling around and people ask you all the time 'is she walking?', you just long to see those steps. So when at 20 months, Addie took off walking, I think it was one of the most joyful moments of my life. I felt such pride and happiness and relief. And I still do. I marvel at her walking around. I am amazed by her and by what all she has been through and I love seeing her now running around the house. She suddenly doesn't seem younger than her peers anymore and she is starting to totally seem like a little 2 year old.
Addie's mobility is something we are extra thankful for because Max is not mobile. While Addie clearly had developmental delays, Max has developmental disabilities and that is a world of difference. With Addie we always knew it was a question of when. With Max, it is a question of if. Which is a harder situation. When we dwell on milestones with Max, it can become disheartening. So I read this great term on another blog and love it- 'celebrating inchstones'. Max may be a long way from some of his milestones but he is making huge progress for him. He's making all these little inchstones. And they are so exciting to see. And eventually they might add up and reach a milestone. But they may not and that's ok, because we can celebrate each inchstone for the miracle it is. We don't need to keep our sight on the mile markers because if we do, we might miss seeing and rejoicing in his inchstones. Like lately we have noticed Max tries to wave back at us when we wave at him. It's so exciting to see him be able to control his arm. And he can grab at his toys in his crib sometimes. And while he does not have head control, his trunk is so much stronger and we're finding he can stay straight and hold a sitting position when propped for photos. He pushes up when on his tummy. He uses his legs and pushes himself down his crib. He can make his hand reach yours and give you high fives. If you were to look only at the key milestones you would see he is not rolling or sitting or crawling and you might think then that he isn't developing. But he is. He is doing lots of little amazing things and we're learning to celebrate those.
I'm thankful today for every single bit of developmental progress my kids are making, for the milestones they hit and for each inchstone as well.