Sunday, February 20, 2011

brains and body...

Hi Friends (:

We saw the scan results from Evie's MRI on Thursday... and in the doctor's words, her brain looks beautiful! No pressure, no extra fluid, lots of healthy wrinkles, and her little bulge just happens to be the way her skull formed together after surgery #1. GREAT news! No repeat skull surgery in the near future (:

Evie made some huge physical progress this weekend. First, I put her in her crib to play. When I looked over she was on her knees, pulling herself up with her arms. She is FINALLY understanding what those legs are for! Later, while playing with her cousin Henry, she decided she wanted his binky SO BAD that she actually used her legs and arms to pull herself across the floor in a sort of clumsy Army crawl! She made it about 3 feet before she tired out, it was AMAZING... and she got the bink before he did (: Now I just need to find something she wants that bad again... she seems to have my competitive spirit, for the sake of Evie's crawling Henry better be ready for some more playdates!

The weird thing about these new experiences is they break my heart in good and bad ways. I'm sure every parent of a special needs kiddo has felt this way, but this is the first time I've felt it so intensely. Watching Evie try to crawl is so exciting and praiseworthy and celebratory. It's such a huge step for her. It's also really hard to watch her struggle SO HARD to do something that most kids do months earlier with much less effort. She and I watched kids her age run the hallways at church today, and she waved her arms in excitement just watching them explore. It was gut wrenching for me to see. It makes me wonder what she's mentally ready for that her body just can't do, and if I'm giving her the opportunities she needs to grow. It's a lot of pressure to wonder if I am doing enough.

When I posted about planning a few posts ago, I meant to write this verse - "Now listen, you who say, 'Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.' Why, you don't even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, 'If it is the Lord's will, we will live and do this or that." (James 4:13-15). This is a passage that used to bring me a LOT of anxiety. I thought failing to plan was planning to fail, so what did it mean if we weren't supposed to have plans?? I thought that this passage meant that God's plans were different than mine... What I have learned is that God's plans are BETTER than mine. Just under two years ago, I was planning a funeral, but God was planning a first birthday party. He knows how Evie will progress, and I can trust his will for her. It is already better than any doctor hoped in the beginning.

Love you friends (: Evie is still sick, but 'if it is the Lord's will she will have surgery a week from tomorrow.' We have a very low-key week so I will try to get some pictures up. Thanks for praying for us!


  1. This made me cry...I have never met Evie, but from the pictures you have posted I can totally picture her waving her arms & smiling when those kids were running around. It made my heart smile to read that she's working on pulling herself up & army crawling around :) So good to hear. I will be praying for her to get to feeling better so she can get that surgery!

  2. A friend of mine gave me your blog address. I totally understand your feelings of joy and sadness at progress. My son is the same way. He just started walking at 17 months because his muscles were too weak before. He is really slow, but he toddles along now. He also gets really excited when other kids his age run around even though he can't keep up with them. But I love seeing his attitude, even though he isn't at the typical developmental stage for his age he still has the greatest disposition and it sounds like Evie does too!

  3. Try chocolate next time if the binky doesnt work :)

  4. We have been keeping up with Evie's progress from pregnancy thru today. My daughter, Becki works for your sister. We have been keeping Evie and your family in our prayers since day one. I can't even begin to tell you the joy, happiness and many tears that we have shared with you even though we haven't even met. Your family has been the greatest inspiration to us and so many others. I can't even begin to thank you for sharing something this personal with the world. Just know that Evie is a miracle that all of us, thanks to you, have experienced. That, in itself, is a blessing, but more importantly, this miracle gives each of us a little more faith in our own faiths and G*d! "Thank you for sharing your "little miracle" and bringing joy, love and faith into each of our hearts. G*d Bless you Evie - we all love you!