What's to come....

"Do not be terrified by them, for the Lord your God, who is among you, is a great and awesome God." Deut. 7:21

"Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever."  Psalm 23:6

Had many asking how Mary Graham is doing and what are our next steps with her. The last couple weeks she has been doing really well, her hips are better and she just seems to be back to herself. She is THE best baby when she feels good....so content, so easy going-this is such a huge blessing. We have just been doing normal stuff and it has been really nice, I am just enjoying her so much. She seems to be growing, although is still very small and we are making some slow progress with her sitting up and getting stronger. On March 4th she will turn one, in some ways I feel like she should be turning ten because this year has been so full, on the other hand, I can't believe it's already been a year. There is much for me to reflect on but will save that for another day.

February is already here and seems to be flying by. We will take MG back to CHOP the week of February 26th and stay for a week. We have appointments each day, meetings with doctors and then also CT, MRI and pulmonology testing all under anesthesia. Then we will return home for a week and then back again for her spinal surgery March 13th in which she will have her veptr rods put in. She will also have a muscle biopsy during her spinal surgery to test for muscular disease. The surgery is 5-7 hours, with about 3-4 days in ICU and then 7 on the floor. I am anticipating staying for 2-3 weeks, but praying for no complications and for us to get to come home sooner.

Deep breath. Although I am anxious, fearful, etc, etc of what she will go through, I know it is time. Her scoliosis is still getting worse and her breathing is becoming more labored. So I know that by March it will be the right time for this. And we are so incredibly thankful for CHOP and the team of doctors, if MG had been born 15 years ago she would not have any options. Praise God for his perfect timing. And we have seen His hand through it all.

It is easy to focus on what this or that doctor has said, the complications many children face with these rods, what her future may look like and so on....but our God is greater and I am clinging to that.

I will continue to update throughout the traveling and surgery. As always, we covet your prayers.

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.

Merry Christmas!

Thank you for the prayers yesterday....Mary Graham got her new cast and stitches taken out. Everything went very smoothly at Children's and we were home by 10:00 am. The doctor said her incisions looked good and the xray showed that the hips were healing properly. We are very thankful for that. She has a cool tye-dyed cast now and her legs are even further apart. We will go in a few weeks to have the cast removed, hopefully, and then she will possibly be in a harness.

Above, the little "chair" was made by my dad and so it has been great for MG to be able to sit up and not have to lay flat all the time. She loves it!

Hoping you all have a blessed Christmas and we are always grateful for each of you.

Mary

For the Mighty One has done great things for me - holy is his name. His mercy extends to those who fear him, from generation to generation. Luke 1:49-50

The verse above is out of the mouth of Mary, for soon she would give birth to Jesus. This is Mary's song.....she was already praising the Lord and although she knew He was to be the Savior, she had no idea what was to come....the cross. She would suffer the loss of her Son, but then the joy would come. Sorrow and Joy - they are inseparable. My favorite part of the song Mary Did You Know? says, "Mary did you know?....the child that you deliver, will soon deliver you." There was so much uncertainty and confusion before His birth, and yet He still came. Now, even in the midst of the chaos that comes with Christmas time or just life itself, what a powerful thought to know that in the midst of all this too.....He has come. 

How I long to have a heart like hers.

Never had I truly read these words and understood. Or maybe God is just revealing more of Himself. As I think back to this year and the journey with Mary Graham, the dark times and the uncertainty that has lingered, I can't help but think the Mightly One has done great things for me. This Christmas is different than I had pictured it to look. In fact, this year has been nothing like I planned. Expectations have been blurred. Honestly though, looking back, He has exceeded my expectations. I did not expect to experience the God of all comfort and mercy. I did not expect to see the light so much brighter after a dark day. I did not expect to grow relationships, not just those already in my life, but old friends and new ones that God has put in my path. I did not expect to see such great compassion and prayer through those around me. I did not expect to come to accept this trial after asking Him to take it away so many times. I did not expect for God to use this baby girl to draw others to Himself. I did not expect to feel the peace that passes all understanding in the midst of my fear. And, most of all.....I know Jesus more, deeper, even though I wouldn't have chosen this way....and I was not expecting that.

So this Christmas may be a little different, but we are so blessed. I hope you find the heart of Mary in the midst of whatever trials you are walking through, and I thank you so much for being so faithful to walk with us even when your lives are very full.

Thank you for continuing to pray for Mary Graham and our family. She is doing so well and I know that is because of God's grace and your prayers. She will have her cast changed on Friday at Children's. We pray for smooth and easy procedure.

Merry Christmas!

Things are looking up

Mary Graham has really turned the corner today. She slept through the night completely last night. Her appetite is a little bit better. The only setback was one of her incisions had started bleeding yesterday and got progressively worse. I was up a lot checking it and spoke with our orthopedist two times in the night. He met me this morning at the clinic. He changed some of the bandages and said it was nothing too concerning, when you are dealing with cut bone and muscles (yikes, could have done without knowing that). So, I am tired, but MG is doing so well that I don't really care. I had to post this little video. Hope you can view it. She can't move, obviously, but she twirls her toes and hands when she is excited. And today we saw some smiles. Thank you for praying, I know it is because God has heard your prayers. Thank you for standing in the gap for us when we are too tired to pray.

We are grateful for your prayers of healing.