8 years and Tallahassee



Eight years ago today, Lee and I said "I do"...although sometimes it seems like it should be eighteen years :) I mean that in a completely good way.....I hardly remember what it was like to not be married to him. God blessed me with an amazing man and I'm so thankful for him. I was reading back in my prayer journals from when I first met Lee and I prayed so many times, "dear Lord, please let Lee call me"...I remember seeing him for the first time when he picked me up for our blind date (which I wasn't not excited about, how many blind dates work out?!). When he came to the door, I immediately thought, I think I'm gonna like this guy and I did.

It's fun to think back to that time in our lives and how I love him even more today than I did on our wedding day. I kind of laugh when I look at this picture and see how in my mind I know I was planning our future, how I wanted it to look, how I thought it would look....but God had other plans, and His plans are better. When I look back over the last eight years, this journey has not been easy. But God has protected our marriage through all the ups and downs, and it has had many opportunities to be attacked....I would never want to go through any of these eight years without Lee by my side. He is a Godly man, a great father and devoted husband....if you know him, you know that he really is just that great. He is the best person for me. This is the verse inscribed on his wedding band and I continue to pray this....
^" I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."
Philippians 1:3-5
Happy Anniversary Lee, I love you!

Also wanted to share about our visit to Tallahassee this weekend where Lee's family lives. We had not been able to go visit with all MG has been through, but now was perfect timing. The best part was getting to go to the Sheppard's church on Sunday and bringing Mary Graham with us. How do I begin to thank this church and all the precious people I was able to meet, many for the first time, who have been so devoted to praying for her. I had so many come up to us and just tell me they have been praying, praying everyday for Mary Graham. When people don't know what to do or say to us right now, just telling me that you are praying is more than enough. We thank each of you for taking the time to pray for MG and God hears yours prayers and I believe he is going to do great things, He already has. Thank you for standing in the gap for us when we haven't know what to pray or even how to pray. I just read the verse in Luke on our way home, "Jesus spoke a parable to them, that men always ought to pray and not lose heart." It is easy to lose heart, so please do not cease praying. God is greater than all of our circumstances. We are honored and grateful for your love for us.

Summer, Loftin and Confessions

"Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart." Hebrews 12

So, summer began for us over two weeks ago and it has been kind of crazy......without boring you with the details, every child has been to the doctor, some more than once and ended with MG throwing up all over the waiting room floor of the after hours clinic. But, everyone seems to be on the mend and we have actually had some fun this last week. It was quite a slap in the face way to "ease" into summer with three kids home for three months. (I know some of you mommas can relate). Right before it all began I was thinking about true daily living as I looked at my calendar full of things to do this summer. My prayer is that I will live each day, enjoy each day, or rest in the fact that God will grant me grace to get through the harder days. Well, week one was quite the test :) This week then began with me getting the stomach bug, yay...hoping our sick days are behind us now for a few months.

MG was having a great deal of right leg and hip pain, mainly after being examined by the doctor for a possible UTI. However, after seeing the orthopedist, having xrays, and talking with the folks at CHOP about a possible MRI, CT, etc (maybe in Philly) she has actually gotten much better and her pain has improved. In fact, I feel like the last two weeks she has been happier than she ever has been.....I'm SO thankful, we did not want to do more scans right now, we did not want to go up to Philly right now, and we did not want her to be in pain....so we have just prayed for the pain to get better, and it has. We praise God that none of this has to occur right now and we are praying she continues to improve up until we go at the end of July to CHOP for her first expansion surgery. She has gotten stronger and is sitting up unassisted for longer periods of time. We are so thankful, that despite these setbacks, she is making some progress since her surgery. I have some video of her I will post soon.

I confess over the last month of letting everything sink in from what our neurologist told us, I have been researching and researching. Trying to figure out things on my own...trying to have the control. But where has that left me, fearful and sometimes hopeless. Loftin said to me the other day, "Mommy, it's really hard to believe in God because I can't see him...how can He be real?" (Talk about a loaded question)......I just looked at him and said "I know, it is hard." That's not all I said, but I could relate to his little 6 year old mind. He wants to see what he is believing, don't we all? He also confessed to me this month "I really think I love Star Wars more than God" and his face showed that he wasn't even sure he should have said that outloud. I told him that God loves him much more than Star Wars and left it at that. Again, I was reminded that I have no control over any of my children, really only God does. Although Lee and I laughed and thought maybe we should cut back on the star wars :) But honestly, it was a good moment for me to surrender this control over to Him. I love that Loftin is asking these questions, thinking more deeply about our Lord and challenging me to think more deeply also. My prayer has always been that my children would grow to love the Lord. But, I must surrender every day these children that He has given us to love and raise and train and grow the best we can....and then surrender again and again.

The verse above has followed me around the last few years, especially while pregnant with MG, God showed it to me so many times and I had written it down several times too. Looking back, there is so much God was revealing to me during that time, preparing me, that I am just now realizing and I hope to share someday. But the words "for the joy" have always been my favorite. Jesus knew he would endure the cross, but he did it anyway...for us....for the joy set before him. And that joy, I believe, belongs to us too. Especially on the days when I am sad, fearful, weary, losing heart about the future, God brings me back to that joy. The joy that there is nothing in this world for me, the joy that our only hope is in Christ, and the joy that we don't even know about yet. He is the one that is the author and perfecter of our faith, just as I see him beginning to work in little Loftin's heart, He is chiseling away at mine too.....sometimes more than I wish. But, although painful, I know it is good. Especially in a world where so many are suffering, and I have seen it more and more around me these days.....God is at work.

Thank you for continuing to pray for MG and our family....please pray for her growth and development, for her upcoming surgery in July, for us as we wait for more tests results and learning more about her muscular dystrophy. Pray also for daily surrender. Happy Summer!

The Mustard Seed

We heard a couple weeks ago from the neurologist....based on her muscle biopsy results, Mary Graham has a congenital myopathy, in other words, a muscular disease or type of muscular dystrophy. The doctor is uncertain at this time which specific kind, but is looking into a few very rare ones, and is waiting to do another test on the biopsy and then possibly a genetic blood test. These diseases are usually progressive, can be mild to severe, with progressive muscle weakness, loss of respiratory function, delays, and there is no cure. We are very saddened by this news, however, deep down have thought that this could be a possibility for her. Just when we thought we had a plan for her, this makes things much more difficult. It often is also hard to get a definitive diagnosis, and may take months before we know more specifics.

Please pray for us as we wait....pray for a hopeful diagnosis, a milder disease that doesn't progress quickly. The doctor said every child is different, even with similar diseases and sometimes you never know, it's a wait and see. Talk about just living for today? I have seen this past year God's grace poured out daily. Lee and I were saying how we don't know how we could handle this kind of news a year ago, but God has prepared us, never forsaking us every step and granting us strength and endurance when we have heard bad news, this probably being some of the hardest to swallow. God is very close to the brokenhearted and I know He is close right now. But, hearing from the neurologist last week, my faith has been shaken, tested greater than ever, I have questioned everything..... I thought of the mustard seed. That very day Loftin brought home a tiny mustard seed on an index card from school. Have you seen one? I never had, they are tiny. I looked at it and thought, "yep, that's about right." But God says that even faith that small can move mountains. He wants our complete dependence on Him. This is no surprise to Him, He's still in control. We continue to trust that God can move mountains, He can do immeasurably more than we can ask or imagine, and trust that this truly is His best for Mary Graham and our family, even if we don't understand. Although I believe in each of these truths about God, it is hard for my heart to catch up with my mind. I would never have chosen this for my child....please pray that God will use this for His glory. She is already such a joy to be around, she is a light with all this darkness, and I pray that she will be a light for Jesus and continue to point others towards Him. She is a blessing....God made her perfectly...and we love her exactly the way He made her. Looking at her helps wash away the fears of tomorrow, but they still linger.

We praise Him for how well she is doing now, for the surgeries she has come through and recovered and seems to be getting stronger. MG is really feeling good, so happy, eating well, seems to be growing and her little spirit doesn't seem nearly as afraid anymore. She had gained two pounds and grown two inches since the end of February. The doctor said we are doing everything we can right now to help her, with her therapy, veptrs and our team of doctors, and we will continue down this path.

Your prayers and faithfulness have brought her and our family through so much this year, thank you. Please continue to pray for Mary Graham, for her growth, development, and healing.

 He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” Matthew 17:20-21

Prayers and Pain Meds

Mary Graham has had a great last couple days.....I believe getting back on her pain meds more consistently and prayers have gotten her over the hump. She seems to be more like herself, babbling lots, eating great and smiling all the time....praise God for how far she has come. We are just continuing to monitor her hip pain and hope everything just needs more time to heal. Feels good to be doing more normal things and that her sweet spirit is coming through. So grateful for your prayers!

Life and Easter

Lots of baseball, choir programs, school parties, Easter egg hunts and trying to get a good family picture.....that's what's been going on in our life the last couple weeks as we are trying to adjust back to normal life. Mary Graham seems to be slowly improving - overall I know she is feeling better......although the last several days have been rough. She is still battling pain and we became concerned about pain in her hips... just touching them in a certain spots makes her scream. Physical therapy has been rough - yesterday she cried throughout the whole thing. So, the orthopedist wanted her to be seen (thankfully we are able to go see our doctor in Birmingham and not Philly) and we went today for xrays. Her hips are still in the sockets and her veptrs appear to be in the same position they were right after placement, thank goodness. The doctor explained the pain could be one of two things, either post op pain due to swelling around her hips because the veptrs are hooked to her pelvis, or because of the great amount of pressure the veptr rods are putting on her pelvis and hips. He said the latter could be worrisome, in that it could be shifting her pelvis so much and affecting those muscles in her hips. So, they want me to continue pain meds around the clock and see how the next two weeks go, also trying her on her tummy (most likely when she's asleep, so she's the most limp) to see how painful it is on her hips when/if they can be straightened. Which may be hard for me to decipher because she has never been able to tolerate her tummy because of weakness and her scoliosis and hips, so we shall see. If the pain continues, it could mean adjusting the position of the veptrs or another surgery. So please pray that this is still part of her healing and that we see improvments over the next few weeks. If you don't quite understand all that I just explained, just know that I don't really either....I have to always get the nurse to explain it over and over again to me.

Despite all of this, she is still giving us some smiles and is content, moving her seems to be what causes the most pain, and that's completely understandable! Also, another concern of mine has been how her little spirit is so afraid now. I mentioned earlier how in the hospital she truly would lose it when anyone even walked into the room. She has become so very aware of what's going on around her. She is great to smile and wave to others from afar, especially if she's in my arms, but when someone comes too close or tries to hold her, it's just too overwelming and she loses it. So, of course the orthopedist visit today was miserable and she has yet to warm back up to our sweet therapists. As a one year old, I know separation is normal, but I also believe all she has been through has affected her so much and I just pray for her fears to be calmed. It's hard for me to imagine all the times we will go back for surgeries and doctor appointments and for her little spirit to be shaken so much each time.

We are so thankful for how far she has come and know she still needs time to heal. Reading back over the posts from this last month, we have so much to praise God for....one huge praise is that her appetite has dramatically improved...she is eating everything I put in front of her. The doctor had said this might improve after the veptrs, but I just can't believe how much-so glad for this and that she is gaining weight.

Some days have been hard and I worry about her development and the longevity of all this, what her future holds...what mama wouldn't? A friend reminded me of the joy and sorrow that is intertwined together in this life, as it was on the cross. It gets hard to lay these things at the foot of the cross, to keep looking up, especially when I have a baby clinging to me :) I'm sure some of you can relate...

I read an update from a friend whose little boy has been sick in the hospital for three months now....what she wrote moved me, "On Easter, as I think about an empty tomb, I am reminded that things are not always what they appear and that God has plans bigger than us."



Lord, thank you for the empty tomb.

Before and After

This was a picture of Mary Graham's back and spine right before her surgery on March 13th. Then below is a picture of her xray before her surgery and then one after with her veptr rods.

 It is truly amazing that these rods are inside MG now. The main improvement has been that the rods were able to lift her ribs up and now her diaphram and lungs have more room to breath. It has been almost three weeks since the surgery and she is doing really well. She is still battling pain and her incisions have a ways to go, but she has definitely improved. Although she is very needy (wants to be held most of the time-which makes life interesting), I'm hoping this will get better over the next month as she continues to heal. We will start back physical therapy 3 days a week tomorrow, Please pray for her pain and development of her back and spine, but also her hips that we are still praying are developing properly since that surgery in December. She has lost some of the skills, like sitting up, and will have to work hard to adjust to her new body and work through the pain. It's all part of the process. 

Here are some recent pictures below and I believe she will continue to get better, we continue to be thankful for God's hand in everything, as these days have not been easy. Her progress is truly a miracle to me, to see how far she has come, and your prayers are such a part of this miracle.

Thank you, always, for your prayers!



Home and Spring

It is so good to be home! Everything is just better when you are home. Our sweet neighbors decorated our porch to welcome us. Our traveling went very smoothly, had a long layover in Detroit, but Mary Graham really did well (valium probably helped :), except for about the last 20 minutes of our last flight into Birmingham and i'm not surprised because of the lady in front of us was throwing up (very loudly) the entire desent...thought I was going to die, although it's pretty funny now. Loftin and Lucy and my parents met us at the airport and it was so great to see them all, and the realization of all we had been through alone, without family and friends near us, hit me hard. But, thank goodness for texting, email, and internet....your messages made us feel like we weren't so far away. And we were truly forced to depend on God completely, for He had so much to teach us about trust and still is.

Mary Graham is doing pretty well, she is up and down and really wants me holding her much of the time-she cries when she's put down. Kind of like having a newborn again :) I believe all that she went through was very traumatizing and will take time for her to heal, both physically and mentally. Although, I know many have said that she will not remember any of this, she still knows. She is and was very aware of it all. God can heal those wounds too though. She has smiled a little more, given us a few laughs and I know she will only continue to improve. Her incisions are looking better, and part of her back blistered up (which is normal they said) and it is starting to heal also. Thank you for continuing to pray for her healing.

Also, when we left Birmingham, it was Winter and now it's Spring and everything has bloomed-it was beautiful driving to our house from the airport and reminded me of the song, "Every Season" by Nicole Nordeman and she compares winter to the harder seasons in our life, how God is in every season, teaching us, growing us until we are ready for the next season. And there will always be a new season.
And then the end of the song....
 And what was frozen through is newly purposed, turning all things green, And so it is with You and how you make me new with every season's change, And so it will be as you are recreating me...summer, autumn, winter, spring.

The harder seasons make the new ones much more beautiful.

http://www.youtube.com/watch?v=r-JgsOMiqCs