Amelia’s type of CP (Spastic Quadriplegic) affects all of her limbs. Her muscles have spastic movements which makes it hard to find her calm. To simply relax. To center herself. Simple tasks are really hard for her and requires deep focus. Sitting without flailing straight back into lie down position is inconceivable right now. Her body wants to move involuntarily and she has to fight those movements in order to steady herself. She has to counteract her body, to do any task. 

As you can imagine, this tires her easily. 

 

And now we know why just about every time we are out in public we get comments that she looks tired. 😴 “She must be ready for a nap.” 

But she would actually be fresh off of a nap (the best time to go out!) - and we agreed with the commentators...she did look exhausted - despite being a really good sleeper…we couldn’t make sense of it. 

IYKYK. And now we know! She is exhausted by simply living her life. 

 

Despite these challenges she is truly living her best life: playing with her stacking ring toys, enjoying her peek-a-boo books, swinging on her outdoor swing that hangs on our back porch, watching the (fascinating) Ms. Rachel on YouTube, going on bike rides with mom & dad, stroller walks with her dog Cocoa trotting beside her, and getting two naps a day! And her long, almost 12 hour sleep overnight. 

 

Her weeks fill up with therapies and Drs appointments but we manage to get into plenty of fun and some downtime too. 

 

She’s entering toddlerhood in full force. We’re beginning to see frustration when she wants to be able to do something but she can’t achieve that task quickly enough. 

What’s making her stronger and resilient is also doing the same to me - as I learn to best support her. ❤️ 

 

I'll be back in a couple of days with a mini snapshot into our birth story, where this journey began for us.