shine on!

it is SUNNY!!!! yesterday was so gorgeous out, blue sky, sun shine, the girls played and played, until we had to get ready to leave to play at Nana's with their cousin Flower. Nana just had knee surgery yesterday, a total knee replacement on her left knee, to match her total knee replacement on her right that she had before xmas.


today is really sunny too. absolutely gorgeous. but neither girl has wanted to motivate to head outside. just play dressup, my little pony, dolls, arts and crafts, and laze about. something about the weekend makes people want to chill. even if we dont follow a traditional mon-fri 8-5 week. :)

we are just about to make a giant get well soon card for Nana, and will bring her flowers and hugs.


but in the mean time Bean is stimming on ripping apart the foam that was lining a dress up hat. We are having a very.... out of it... day today with Bean. she is talking manic, and talking at, instead of to or with, people. she is glazed over. these days happen. and we endure.

i could make it all sparkles and unicorns, but to be honest, being her mom is HARD. not just the actual parenting, and being present, and engaging, and making sure her sensory diet is exactly what she needs, etc. someone recently said, on a space for parents of ShinyKids, that as parents, we have this idea in our mind of who our children will be, before they are even born, we have visions of all the things they will do in life, all the milestones they will meet, all the things you will do together, all the fun adventures, and snuggles, and happy sunshine flower farts. and then your child is born, and this little person, is their own individual, and we still hold on to that vision. as they grow, and develop, and become more independent, we see that our visions arent always spot on. this is the case for me. Bean is her own person. she has her own ideas, feelings, plans, and desires. she is not neurotypical. she doesnt meet the same milestones as neurotypical (NT) kids. some she meets earlier, like with her speech, it was EARLY, and now at 6.5 she has a vast vocabulary. language is definitely a strong spot. and she meets some milestones later, or not at all. like, using that amazing vocabulary to express her intense feelings when they happen, instead of lashing out with violence. she is socially awkward. she wants SO much to have friends, for everyone to like her for who she is. but the NT kids just dont get her. she is so bright, and exuberant, she has so much to give a friend. she is loyal to the end, a strong champion for fairness, and has such a strong energy for FUN. and these kids are really missing out on having an amazing friend in her. even though she wont always look at them, or if she does, it is staring. even if her volume is only one level, LOUD, even if she cant do the physically challenging activities that they want to do because of her low muscle tone and weak core, and has fears of falling, tipping, and not having total control of her space in the world. she is an amazing child. truely one of a kind. there is not one single easy moment when it comes to being her mom. as much as i love her, as head over heels in love with the amazing child she is, she isnt the child in the visions and hopes and dreams. and... to be honest... i still grieve. and i am working through it. sometimes when she sleeps i watch her, still and silent on her pillow, dreaming her amazing dreams, calm, at rest, and my heart swells with love, and breaks into a million pieces knowing how hard life is for her now, and how it will be in the future.
my sweet Bean.

Bug has been into doing the OT therapies at home with Bean, so after Bean gets brushed down, and gets "bone crushers" Bug asks for her turn. Bean will stick her nose into pots of scent, and Bug will follow. Bean will go to town on a bowl of flour with hidden beads and gems, and Bug is right next to her, digging in her own bowl for treasures. I think it helps them both. Bug gets to spend time with her big sister that she looks up to, and gets to do these things that big sis does. and Bean gets to feel.... normal. she sees that she isnt the only one that enjoys these things. she has a partner to enjoy these things with her. and that is important.