Five, Fierce, and Absolutely Fabulous

F1D9365C-5D1C-4141-A41D-11BB81CDBDB7Sophia turned 5 years old this February and it finally set in that she isn’t a baby anymore. With us still working on head control, sitting, babbling and a long list of other developmental milestones, it just hadn’t really set in. Five is just, sort of… monumental. So, let me tell you about this fabulous five-year-old.

Although Sophia is considered nonverbal, boy, does she have a lot to say. She communicates “no” very clearly with an adamant head shake  or a growl of distaste… and gives her approval with the brightest smile or an impatient “uhuh.” It feels extremely odd for me to have to say she doesn’t “talk” yet because we have conversations with her daily. There might be many things she hasn’t quite got down yet, but we can check off for the sassiness.

She’s in her second year in a Functional Skills classroom at a local elementary school. We absolutely love her teacher and all the activities the class does. My fears of Sophia sitting, slumped over in her wheelchair all day were completely obliterated and replaced with the peace of mind of knowing Sophia is in an atmosphere of love and faith.

Last year, we had the miracle of her seizures coming to a halt… this year, even with only two weeks left, I’m still believing for her to walk into school. She still hasn’t been taking steps in her gait-trainer, but whatever… if I misheard God’s timing, then that’s okay and we’ll push on believing for it next year. I absolutely know it’s not a matter of “if” but only of “when.” God’s just going to have to show me the “not yet”  for this year school year before I settle for it.

The things we have achieved so far this school year include moving off of a bottle and improvements in vision. So, Sophia was on a feeding tube until right before she turned two. Then we got her to drink all of her food by bottle… which was a miracle in itself. Then this year, we were able to transition her to spoon feeding and a sippy cup! I didn’t think it’d matter much to me but it made me emotional, packing bottles away. It reminded me that God’s timing is intentional and perfect, and that she was doing all things in her time.

Sophia, still considered legally blind, has also shown progress in her vision. She might still not see how we see yet but again, “when” not “if.” Cortical Vision Impairment (vision issues based from abnormalities in the brain) is not supposed to resolve completely… ever. I just can’t deny the overwhelming feeling of “all things” that constantly brushes my spirit when I start feeling doubtful. At one point Sophia would not react to anything visually except light. Now she interacts with her iPad and other toys, reaching and activating them. That’s a big deal for us.

It’s challenging to explain her progress because many of the advances are subtle… well at least to the naked eye. Some moments are tough as I think how much we’ve yet to check off, but looking back always eases my mind and places things into better perspective. God’s perspective. Plus when I’m still and don’t allow the noise of the world to distract me, His promises are more truth to me than anything else. I don’t mind looking idiotic or in denial because I know that I know that I know…

As Sophia’s growing, it is getting more challenging to carry her. I remind myself that this 35-pound, 40-inch “baby” was once under 2 lbs and barely a foot long. That seems to make it a bit easier… even if I do only have a foot and a half on her. 🙂

One thing I think people who are regularly around Sophia would agree on is she is SO full of joy and laughter. She is absolutely the silliest little girl, ready to laugh at a silly sound at any moment. Lately, my deep-voiced “Yum, yum, yum, yum, yum” has her laughing hysterically. Those moments, the sky could fall, and it wouldn’t even matter.

We love Sophia for Sophia. If nothing was to change, developmentally, from today, we would still celebrate her and feel overwhelmingly grateful to be her parents. I also feel because of my love for her, that I can’t settle for anything less than what God has placed in my spirit about her life.

Sophia. WILL. Change. This. World…

and I’m excited to see how God unfolds that in the years to come.

Dream big. Believe big. Live big.


One thought on “Five, Fierce, and Absolutely Fabulous

  1. Sophia is a wonderful girl, she has a great personality and lots of laughter as you stated. She will have more development of growing in her life. I believe as you do that she will conquer many things. She bring lots of joy to everyone who know her she is a sweet person. I love Sophia as well, I love to see her light up a room.


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