"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Friday, February 28, 2014

Happy Birthday to TWO

One reason I love this blog is that it allows me to sit and capture exactly where we are at at different times in our life, and today, we're celebrating a birthday over here! Our sweet Meghan is 2. Oh, how my heart ached last night as I gave my baby a bath, knowing it is likely the last time I will bathe a one year old. We are entering full on into toddler-ville, and let me tell you, Meghan is excited to be two. Our neurologist told us by the time she was two we would have a pretty good idea of where she will fall on the "spectrum"- something you cling to when you are the parent of a neurologically challenged child. It's a birthday that I have looked forward to not only because it would mean that we get to celebrate another year of her life, but also because I thought it would bring some degree of certainty to all the "wait and see's" we heard over the first year of her life. Now that we are here, there are a few things I am certain about. I love this kid beyond my wildest comprehension (and her big sister too). She loves singing more than just about anything, except maybe the dog. She cannot walk at 2- and that is totally ok. She knows her ABC's. Her most favorite thing to do is open and close- anything, repeatedly. She trusts me to clean her feeding tube, repeating "almost" as I do it because I always tell her I'm almost done. She says "I'm sorry" or "It's ok" when she's hurt, mostly because it's what I've always told her when anyone has to do something painful to her while she's awake. She loves to be outside, and to feel the wind on her face. She knows most all her animals, and Meghan saying "ee oo ah ah monkey" is maybe the cutest thing, ever. Her big sister got to take a "walk" with her last week- for the first time ever. This was big big stuff. She loves to dance- especially since our version of dancing is me holding her in my arms and skipping and twirling around the living room. She also loves to hug- if you see her scrunching up her face, pursing her lips and leaning into you, feel blessed. This is how she hugs. There are so many things about Meghan at two that I want to bottle up forever, and this is the bittersweet adventure of parenting. It's our job to help them grow, and we celebrate each new adventure, all the while wanting to cling to what is passing for just one more minute.

So she's two. Now that we have arrived at what they said would be an important birthday for developmental reasons, I could honestly care less what that means. More important than discovering where she's "at" at age 2, we love her just because she's Meghan, and that is more important than letting 2 be defined by her abilities. Here's to another year of adventure, of love, and of having the privilege to watch her grow!
Swinging with Daddy

This folks, is my cheese face.

Trying out the big kid stuff!


New transportation! We just ordered one (pending insurance approval) and are very hopeful to be taking some "walks" this summer!!

Had to add one of my big girl. Meghan wouldn't be Meghan without her Addie.

You have searched me, Lord,
    and you know me.
You know when I sit and when I rise;
    you perceive my thoughts from afar.
You discern my going out and my lying down;
    you are familiar with all my ways.
Before a word is on my tongue
    you, Lord, know it completely.
You hem me in behind and before,
    and you lay your hand upon me.
Such knowledge is too wonderful for me,
    too lofty for me to attain.
Psalm 139: 1-6

Thank you Lord that you know Meghan completely, and love her more than we will ever be capable of loving. Thank you that you have gone before her this next year. You know what is ahead for her, and what she will need. Thank you for the blessing of having this sweet life in our family, and in your wisdom, changing us to fulfill your purpose for our lives and hers. We praise you for your faithfulness.

Saturday, February 8, 2014

Say It's So

Happy New Year! We're inching through these last weeks of winter, and ever closer to Meghan's second birthday. Apart from being cooped up in the house other than outings for therapy we've had a really great few weeks. On the medical front, she just saw her GI and dietitian and we're upping her calories to see if we can get her to put on some weight (she's still in 12 month pants!). She is so active lately! We're also looking into a blenderized diet for her (whole food nutrition through her g-tube), but we have to work closely with the dietitian to make sure she gets exactly what she needs. Other than that we've been working hard in PT to strengthen her legs. She's very motivated to stand, and reach objects that were previously unavailable to her- including- joy- the toilet lid (why does every toddler find fascination with this??). She also got to try out a gait trainer (think walker, for very tiny people), but as you can see, Meg was not exactly a fan...

We are told she'll get used to it:) 

The last couple months Meghan has continued to add words to her vocabulary. She can name more objects now than I can count, and has several phrases such as "hold you", "sit on the couch", "hi sweetie", and "more chicken!". Last night I had given her a bath and was holding her while we brushed her teeth (well, I get one swipe and she says "you try!" and grabs the brush). Out of the blue, she looks at me, leans in and gives me a Meghan hug (the arms aren't part of the hug just yet:). Then she looks up and says "I love you so much". Quite possibly the first five word phrase I have heard her say. Be still my mommy heart. For this sweet little girl who has the scariest brain MRI report I have ever read to be able to say that to me is a miracle. Every single child born is born with a purpose, regardless of their given abilities. So much of Meghan's life remains uncertain, and I don't know what plans the Lord has in store for Meghan for her future, but I am now absolutely certain that Meghan's purpose includes having a voice- and with that voice, we will teach her to praise the one who gave it to her. 

"I praise you Lord, for I am fearfully and wonderfully made"
Psalm 139:14

Here's a little sample of what she's doing recently. This is Meghan's Grammy:) Thanks to ALL our family who are in her face teaching her just as much as we are!