Imperfectly Perfect

It has been a whirlwind of craziness these past couple of weeks. I had hoped to make time earlier on to put up another post, but between starting nursing school and home, time has been extremely limited. 

In between those long days and short nights that we call life, I have been pondering on where we are now with Aisllyn in comparison to where we started. It was only in mid-March of this year that we learned her diagnosis, but those days, weeks, and months have felt like an eternity. I struggle daily. And sometimes hard. With my faith, with my emotions, with questioning my abilities and choices I make for myself and my children. Mostly right now, with my faith. 

I never in a million years would have believed that our amazing littlest bit would be given a hand that is so unfair. Yes, she is making progress by leaps and bounds compared to where we were at before starting her therapies. But even with the strides Aisllyn is making, I catch myself feeling like she should be doing more. Or, more often, that I should be doing more for her.

I am angry with God for giving Aisllyn such a tough hand in life, for giving me the responsibility to care for a child that needs more than I feel like I can ever give her in a day, let alone the rest of her life. I struggle to understand why any child, any person, why MY child has to deal with such a crappy disability. Or any disability for that matter. And then I feel selfish, because there are many more children out there whose parents would love to have these little steps because their child is fighting for their life, or just not progressing as well as Aisllyn is. It is such a double edged sword!! 

But then I look at her... 

Today, we celebrated a HUGE accomplishment! My oldest daughter came into the kitchen around lunch and said she was hungry. Aisllyn came crawling right behind her around the corner. I got Taylor started on making her lunch, and Aisllyn started oohing and squeaking the way she does when she wants attention. I looked down at her and she took her paci out of her mouth and put her fingers into her mouth and smiled. I asked her if she was hungry, did she want something to eat. And she started bouncing up and down, putting her fingers into her mouth, laughing and squealing the way she does when she is excited about something! She told me exactly what she wanted!!! 

Last night, I laid on the floor, Thomas sat in the recliner, and Aisllyn made a game out of pulling up to standing in front of Thomas with her little bunny rabbit purse on her arm. She then cruised a few inches closer in my direction and held a hand out for me to hold so she could walk to me. After she made it back to me, she turned around (after kissing me on the mouth and waving bye bye) to make her way back to the recliner and start over again. I flashed back to Taylor and Hannah at around 2 years old, running into the room to grab their purse and sling it onto their arm, ready to run out again to go 'shopping' or whatever they made up that day, but not before a kiss and a wave. Aisllyn is right on track cognitively for the play that children do at this age, albeit slightly hindered from her inability to walk alone right now. And my heart broke again! Because she is right there, but just not quite able to make it over that hump yet. 

Tonight, as I rocked her to sleep, she sang and sang and sang her heart out. I sang with her, but I mostly listened to her la la la's and da da's that were so precious. She sang herself to sleep. And looking at her resting, so peaceful and content for the most part with her life and abilities, I saw nothing but perfection. She is imperfectly perfect. Just as we all are; made in God's likeness. 

I don't know why our family was chosen to shoulder this task. It's not a burden by any means; hard... well, yes. But life isn't easy, I suppose. And moments like we have had the past couple of days keep my faith going and give me hope that we are doing right by her. I pray for the strength to grow my faith. And for these hard days, where my emotions get the best of me, to become less frequent and eventually diminish.