I hesitated about posting it, even though it is only 13 seconds, it is 13 seconds longer than so many children diagnosed with CDKL5 or other various causes to their medical complexity have been able to do. While it by no means can count as hitting the milestone, I am feeling a pang of milestone guilt for the other mother's who have not experienced these 13 seconds. I still cannot leave her on the floor to play, sit alone on a couch, put her in a shopping cart, or place her in any other situation that the majority of parents of 6-8 month children get to celebrate doing, it is 13 seconds longer than I expected at this point in her life, and 13 seconds longer than some of my special needs mommy friends haven't been afforded.
4 years into this life and I feel like I am still figuring out how to make it all work. The desire to celebrate milestones met by our children's friends, yet silently mourning the fact that our child can't or won't meet them. The desire to want to celebrate our child's accomplishments without making another parent cry themselves to sleep because of it. The doubt we feel about what we are doing to support our child when another parent says all that he or she has their child participating in. The wondering if what we are doing is ever enough. The confusion of if our choices are right or wrong, and if those choices are the causes of the negative outcomes that ensue. And the ever-present, always lurking question of despite what we may or may not have our child try, despite them ever officially meeting any standard milestone, does everything we do at least add up to a desired quality of life.
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