Unfolding Grace

"So we are not giving up. How could we. Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good, the lavish celebration prepared for us." 2 Corinthians 4:16-17 (The Message)

Easter Sunday family pic

Eating at our fav place at the beach

The beach was beautiful for spring break

We have taught our Kids the art of putt putt :)

MG having a check up at the ortho-the fact that she can sit like that on the table and is smiling shows she's come a long way!

Turning 5 years old

Hello blog readers, are you still there? I have really fallen behind lately :(

It will be one year since MG's big hip surgery on April 9th-part of me can't believe it's been that long and part of me can. It has truly taken almost the whole year for her to heal and she is still making progress. She can definitely walk better independently and yesterday I told her to stop jumping on the couch! But she still is very tight through her hip and works hard at PT twice a week to stretch it and strengthen. And the lift for her shoe has helped some. How thankful we are for how far she has come in the last year.  

MG turned 5 years old in March. She was super excited, she told everyone she just felt 5, she felt bigger :)

 All day thinking back on the last 5 years, she's been through so much and still exudes joy. It makes anxious as I watch her get older and become so much more aware of herself, aware of her differences, her disability as she begins to ask me a lot do questions, like "when can I run fast like my friends?" "why do I have surgeries on my back?" And so on.

I watched her at a birthday party recently at a place where there were lots of high things to climb on and jump and slide. Some things she could do with my help, but I watched her frustration as some of her friends were enjoying those things and she just wanted to play with them, to join in, but she watched.  She fell a couple times and I felt like she just faced so much disappointment that day. But as we were getting in the car to leave, I was teary and thinking about her and of course she pops her head up from the back seat and says "that was so much fun!" She has such a great joy and confidence that I pray she doesn't lose as she gets older.

Lucy walked out of gymnastics the other day with a total look of disappointment, one I had not really seen so greatly on her face. She didn't pass the test to move up and her friend did. In her 8 year old mind this was a big deal. I was sad for her, but then I thought more about how this was a good thing for God to use in little ways to teach her about failures and disappointments in life. 

It's hard to watch your child go through a disappointment, and I'm sure they get bigger as they get older.  But God has shown me that through those disappointments and failures is when they begin to have a need, one that I can't fill....a need for something greater and to realize they can't get through life alone. They need a Savior. They need Jesus. Just like I do. Every. single. day.

The beauty is seeing God's unfolding grace in each of our lives if we begin to look for it. I love these verse above from The Message bible. Not a day goes by without the unfolding grace and we (and hopefully our kids) realize that none of this can compare to the coming good that awaits us. 

Mary Graham has been very busy....

This was a sleep study at Children's hospital in town a few weeks ago-she had to sleep in all of that! I couldn't believe how well she did. A sleep study will be a common thing for MG as we want to make sure her lungs and diaphram are still strong with her muscle disease. She is having some apnea episodes during the night they discovered and may need to start sleeping with oxygen. We are still exploring this right now though and going to see her pulmonologist at CHOP next week.

She was doing really well up until this point

Then they finished all the wires and hooking up-I can't believe she actually slept!

And, have any of you seen this video of this little girl? I watched it and it reminded me of MG and would love to see her have a service dog one day. I think it could be so cool!

http://abcnews.go.com/WNT/video/special-bond-young-girl-rare-genetic-disorder-service-34980708

Also, she's trying out a new power wheelchair that will help her with long distances, especially when she goes to kindergarten next year. It was a little overwhelming for her (and us) at first, but she's done well with it. This is a loaner and we will have to purchase our own soon. They weigh almost 300 pounds so we are still figuring out the logistics with it. MG says she wants a pink polka dot one :)

here's a little video (she's visiting Lucy's classroom)...

In other news, Loftin and Lucy are doing well, enjoying this spring weather and ready for summer. Loftin is playing soccer and turned 10 in March-that is unbelievable to me, he seems so old. Lucy loves school, piano, ballet and gymnastics. Last summer was so hard for all of us, with MG being in so much pain, it was hard for her to ride in the car, sit on the beach, change clothes, really doing anything hurt. So, as we are finally being able to breathe again, i'm really looking forward to a painfree summer. 

But first, more surgery....we are going to Philly next week for an expansion of her rods on April 14th. We would love your prayers for a smooth procedure and safe travels. I'm always so grateful for all of you that are praying. Our pastor yesterday talked about the story when the man who couldn't walk was lowered by his friends through a roof so he could see Jesus. He said that the friends in this story play such an important role. They were helping this man, supporting this man and bringing him into the presence of the Lord. I thought of our "tribe" and how all of you are lifting us up and walking with us through this journey. 

The other day MG over heard me saying to someone, "she has special needs" and  she turned and looked at us and said "I don't have special needs. God made me special." 

Yes, indeed. 

Thanks for your prayers over the next week with surgery and for reading this long post :)