Prayer

Yesterday I received a package in the mail for me and Mary Graham. Opening it I found two beautifully hand woven shawls, a blue one for me and a yellow one for MG. I cried when I saw them. Also was a card from a sweet couple, The Millers (very good friends of the Sheppards). The Millers are from Texas and their church has been praying daily for Mary Graham and our family since this journey began. I have received numerous cards from them and have been so moved by their love and support....they are overflowing with the love of Christ. The shawls were made by members of their church in Texas and this is what was said about them....

The person who created your shawl prayed for you while knitting. That person may or may not have known your name or your circumstances, but every stitch was combined with prayer specifically for you. Whether in times of distress or moments of joy, let your prayer shawl be a reminder that God loves you. Remember when it rests on your shoulders that you are covered in prayer.

I have felt covered in prayer. Thank you to the church family at St. Matthew's Episcopal Church for taking the time to make these shawls and for praying for all of us, especially Mary Graham. These will be such a source of comfort and peace, especially when we are traveling and have long stays in the hospital. Thank you for the reminder of God's love through his people....the dedication and faithfulness of your prayers means more than you know.

God continues to use his people to bless us over and over. A precious friend, Kristin Prickett (who started a prayer pager ministry after losing her baby girl, Olivia, to SIDS over a year ago) gave me a prayer pager several months ago. When the pager number is called and we hear it go off someone, somewhere is praying for MG, and we don't even know who. My kids love it and every time it beeps they say, "someone's praying for Mary Graham."

MG is doing really well, getting better and stronger....your prayers and God's peace are carrying us through each day. We are so very grateful.

Mary Graham and her prayer shawl

Little frog

Yay!

Mary Graham got her cast off yesterday and she looks like she is "stuck" in the froggy position.  It really is amazing that her legs use to only hang straight and now look at her. I'm so glad it off and to have my baby back, but she's in pain. After having been in a cast for over 5 weeks, not having bent her knees, she is very stiff and weak. Anytime I move her, change her diaper or pick her up she screams because her muscles are so sore. The doctor said this would take a couple weeks to improve. She is happy to be back in her bouncy seat and I'm sure she will improve each day. We will be doing lots of physical therapy, with her VEPTR surgery just 2 months away. Pray, pray, pray for her to get stronger and put on some weight over these next 2 months. We praise God for her healing and that the hip surgery is behind us-thank you for praying with us. God is at work, hearing our prayers and I look forward to Him doing great things, I know He loves MG so much.

Looking Up

Yesterday we took Mary Graham to the neurologist for the first time. Our pulmonologist and genetics doctors thought that a neurologist might provide some valuable insight in trying to better understand Mary Graham.  As our neurologist put it, it is somewhat of a puzzle and we are trying to put the pieces together. He wants to look more into a possible neuromuscular condition based on her rigid hips and spine and delays. These are disorders of the muscles or nervous system and there is a wide range of these conditions. He wants MG to have a muscle biopsy that will show more... not sure when this will happen, possibly during her surgery in March. None of the other tests she has had up to this point would have shown these kind of conditions. So, more tests and more waiting.

On another note, Mary Graham is doing really well.  She has been such a trooper in her cast, even having developed strep over the holidays - her sweet spirit is refreshing. I believe God gave her this temperament to better endure her challenges. Those of you that know her well, I'm sure would agree. Her cast will hopefully be coming off next Wed. Jan 11th.....thank goodness - I'm probably more ready than anyone. The holidays have been quiet for us this year, some days rather long with all the kids home and not being able to go many places...but even though it's been a little different, it's been good. It is during these quieter times that God allows me to hear him.

Hope the holidays were good for each of you. What are your new year's resolutions? Lee and I were talking about resolutions and I laughed thinking, I will probably drink more diet coke and exercise less this year :)
At the start of a new year I have heard many say they are "looking ahead to a new year" Honestly, I'm not so sure I want to be looking ahead. In fact, as I look ahead to 2012 there are some difficult things we will face with Mary Graham ... some I am dreading. The more I have thought and prayed about this, I have thought that God maybe wants me to see things differently. Then, yesterday, after a long appointment with the neurologist,  I received a book in the mail from a sweet friend called Everyday Prayers by the pastor, Scotty Smith. When I opened it to the January 6th day, the verse read from Colossians:

Since, then, you have been raised with Christ, set your hearts on things above, where Christ is, seated at the right hand of God. Set your minds on things above, not on earthly things. For you died, and your life is now hidden with Christ in God. When Christ, who is your life, appears, then you also will appear with him in glory.

God wants me looking up, not looking ahead .....setting my heart and mind on things above, not on earthly things or my circumstances this day. Yes, just today. I have said before that the future is where the fear lies, but God gives me grace and mercy this day. So, this day we will remain hopeful in Christ.  After all, as the verse above says, he is our life.

Lucy, our 4 year old, ran in my room this morning, and it was right when I was feeling overwelmed with everything, and enthusistically said, "Guess what our bible verse is at school? Call to me and I will answer you." She then said, "we know that verse." We do. The one verse that has stood out to me from the beginning of this journey. Then later outside she was pointing to a little heart on her riding toy that plays music and said, "I'm going to push this heart, because God loves you mommy and he lives in our heart." Thank you, Lord, for speaking to me through the eyes of a child.

God has already carried us through darker days and given us so much to be thankful for including the progress Mary Graham has made. My fears begin to melt away with just looking at her and looking back and seeing how God has worked in me and our family and the blessing Mary Graham has brought to us.....blessings that I could have never experienced if she had been born differently. Because of her and the way God has used her condition, I am changed, still being changed daily, and no longer see the world with the same perspective. And for this, I am thankful. And I hope and pray that by looking up I no longer focus so much on my circumstances, but seeing God's work all around me. God is so much bigger than I can even fathom and no matter where we are in life, this is His best.

No matter what the doctors say and no matter what/when/if she gets a diagnosis....we trust Him.  I hope to choose to walk by faith and not by sight each day this new year that is put before me, no matter what may come, or how hard it will be to trust or understand this plan.....I know He will not grow tired and weary and his understanding no one can fathom. I look forward to seeing God do great things and to focus on the joy that is set before me.We remain hopeful this day. My new year's resolution.....looking up.

We ask for your continued prayers for Mary Graham's....for her hips to continue to heal. Please pray for our travels to Philadelphia in February and then again in March for her spinal surgery. Pray for the testing and a hopeful diagnosis. Pray for her growth and development. And pray for us to continue looking up and praising Him for all he has done and will continue to do. I will continue to update as we get closer to her spinal surgery and all that is involved. Thank you again for coming along beside us and continuing to pray for Mary Graham, we are so grateful.