My feet are strong, my eyes are clear
I cannot see the way from here
But on we go, He knows the way
And in His arms, He keeps me safe.
Fear not, keep on, watch and pray
Walk in the light of God’s highway
~Sandra McCracken
I've been wanting to update since school started and now it's November! Summer flew by for us. It was a good summer, the kids did camps and we went to the lake and beach and MG (jumping in the pic above) was able to gain more and more strength in her hip and and now Mary Graham has started Kindergarten, Loftin is in 5th grade and Lucy in 3rd. Someone once told me time really starts to fly when your kids all get into grade school and I believe it. And, as you can see from the pictures below we added a little baby to our family named Scarlett. She's a goldendoodle and the sweetest dog in the world, we may be a little biased. But we love her. So, just when all my kids went off to big school I have a new friend to take care of -but she keeps me company while everyone is away during the day.
Mary Graham has had a really good start to kindergarten. She has Lucy's same kindergarten teacher, whom we love and she has the sweetest aide who is with her much of the day. Also, she has a new "ride," her hot pink power wheelchair. This helps her keep her endurance up through the day and keep up with her classmates, especially in such a large environment. We have had a few bumps, a few times she has fallen in PE or recess and hit her head, so this has been tricky because when she falls, she falls hard, without lots of strength to catch herself. So we have had to insist she use her wheelchair more when she's with all the other kids on the track....she hasn't been happy about that. It's like a switch went off in her and she decided to become Miss Independent. She has told me she doesn't like it when kids stare at her in her wheelchair. MG has always had so much confidence and still does. As I have watched her the last couple months we are entering a new phase for her and us. I have seen her make tons of new friends, she is loved so well at this school. Her teacher laughs that everyone knows her-she gets so much attention everywhere she goes at school. I love hearing that, but I know when she is asking her aide not to stand by her or to want to run with her classmates and refusing her wheelchair, she just wants to be like everyone else. All the kids are so kind and love her-but I think she just wants to blend in. And I get that. Also, I think she likes not having me around so much and is so determined to just do and be like her peers. That determination will carry her far.
For these last 5 years we have carried the burden of her disease and all her surgeries ourselves and for the first time I am watching her begin to carry this burden herself. She's growing up, becoming so aware of everything and everyone around her. Part of this has been hard to watch, but another part of me is seeing God shape her and letting me step back some and see Him guiding her journey. Because really this is her story, and I have been able to to be a witness (and document) all that God is doing in her life. Now my control (no sure I had that much) is starting to really diminish and I know it will only continue to do so. Of course, we will always walk beside her, helping her and advocating for her. But some of the hard things and pain she is going to have to carry herself-but my prayer is that she will only turn to God for help. This is what I want for all my kids, when they experience pain or embarrassment or disappointments in this life, they will turn to Jesus. What a challenge to me to have to loosen my grip, to hand them over to Him who loves them more than me.
Now, it's that time again....surgery. I think have mentioned since her last expansion last April that Mary Graham was a possible candidate for these magnetic rods, called MAGEC (pronounced "magic" which MG loves) rods to replace her current VEPTR rods. And that's exactly what they are. Instead of having to surgically go in and expand her rods every 4-5 months, she will have them expanded in the orthopedics office about every 3 months with a magnet that is laid on her back. So after she gets these rods, no surgeries, no incisions, no week long stay in Philly and no risk of infections or time for healing for an expansion. The expansions will be closer together than we are used to, but it will only require one night trip up to have this done. This is huge, I almost can't even believe this is possible for her. I know from experience that nothing comes without bumps or complications. But we pray this is the best decision we are making for her and have spoken many times with her doctors. It's hard starting something new, but we hope this is a really really good thing for her.
We head to Philly this weekend and ask for prayers for our travel and for this big surgery next Tuesday. Because they are replacing both rods, and the MAGEC rods are more bulky, we aren't sure how she will respond, but I imagine more pain and a little longer recovery. She is excited right now about going to Philly (we hear there is a new American Girl Doll store), but when the surgery comes and she sees those masked doctors and nurses it gets very scary for her. Yet, another positive reason for these rods, her fears and anxiety. God has walked with us and I know he will continue to no matter what. We pray for her pain and recovery and for these MAGEC rods to be a very good thing in her journey.
Just like the words of this song, "my feet are strong, my eyes are clear" and I am confident that Christ has my feet firmly in Him and my eyes are clear as I know the Truth of his promises. The harder part is the next line...."I can not see the way from here." But isn't this the way it is in all our lives. On this journey with MG and other circumstances we don't know what's just around the corner, but God tells that "on we go, He knows the way, and in His arms, He keeps me safe." There is great comfort in this.
Thanks so much for praying for MG and for us and I will keep you posted this week!
Mary Graham has had a really good start to kindergarten. She has Lucy's same kindergarten teacher, whom we love and she has the sweetest aide who is with her much of the day. Also, she has a new "ride," her hot pink power wheelchair. This helps her keep her endurance up through the day and keep up with her classmates, especially in such a large environment. We have had a few bumps, a few times she has fallen in PE or recess and hit her head, so this has been tricky because when she falls, she falls hard, without lots of strength to catch herself. So we have had to insist she use her wheelchair more when she's with all the other kids on the track....she hasn't been happy about that. It's like a switch went off in her and she decided to become Miss Independent. She has told me she doesn't like it when kids stare at her in her wheelchair. MG has always had so much confidence and still does. As I have watched her the last couple months we are entering a new phase for her and us. I have seen her make tons of new friends, she is loved so well at this school. Her teacher laughs that everyone knows her-she gets so much attention everywhere she goes at school. I love hearing that, but I know when she is asking her aide not to stand by her or to want to run with her classmates and refusing her wheelchair, she just wants to be like everyone else. All the kids are so kind and love her-but I think she just wants to blend in. And I get that. Also, I think she likes not having me around so much and is so determined to just do and be like her peers. That determination will carry her far.
For these last 5 years we have carried the burden of her disease and all her surgeries ourselves and for the first time I am watching her begin to carry this burden herself. She's growing up, becoming so aware of everything and everyone around her. Part of this has been hard to watch, but another part of me is seeing God shape her and letting me step back some and see Him guiding her journey. Because really this is her story, and I have been able to to be a witness (and document) all that God is doing in her life. Now my control (no sure I had that much) is starting to really diminish and I know it will only continue to do so. Of course, we will always walk beside her, helping her and advocating for her. But some of the hard things and pain she is going to have to carry herself-but my prayer is that she will only turn to God for help. This is what I want for all my kids, when they experience pain or embarrassment or disappointments in this life, they will turn to Jesus. What a challenge to me to have to loosen my grip, to hand them over to Him who loves them more than me.
Now, it's that time again....surgery. I think have mentioned since her last expansion last April that Mary Graham was a possible candidate for these magnetic rods, called MAGEC (pronounced "magic" which MG loves) rods to replace her current VEPTR rods. And that's exactly what they are. Instead of having to surgically go in and expand her rods every 4-5 months, she will have them expanded in the orthopedics office about every 3 months with a magnet that is laid on her back. So after she gets these rods, no surgeries, no incisions, no week long stay in Philly and no risk of infections or time for healing for an expansion. The expansions will be closer together than we are used to, but it will only require one night trip up to have this done. This is huge, I almost can't even believe this is possible for her. I know from experience that nothing comes without bumps or complications. But we pray this is the best decision we are making for her and have spoken many times with her doctors. It's hard starting something new, but we hope this is a really really good thing for her.
We head to Philly this weekend and ask for prayers for our travel and for this big surgery next Tuesday. Because they are replacing both rods, and the MAGEC rods are more bulky, we aren't sure how she will respond, but I imagine more pain and a little longer recovery. She is excited right now about going to Philly (we hear there is a new American Girl Doll store), but when the surgery comes and she sees those masked doctors and nurses it gets very scary for her. Yet, another positive reason for these rods, her fears and anxiety. God has walked with us and I know he will continue to no matter what. We pray for her pain and recovery and for these MAGEC rods to be a very good thing in her journey.
Just like the words of this song, "my feet are strong, my eyes are clear" and I am confident that Christ has my feet firmly in Him and my eyes are clear as I know the Truth of his promises. The harder part is the next line...."I can not see the way from here." But isn't this the way it is in all our lives. On this journey with MG and other circumstances we don't know what's just around the corner, but God tells that "on we go, He knows the way, and in His arms, He keeps me safe." There is great comfort in this.
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| Scarlett |
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| Kids think she's a stuffed animal |
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| Off to 5th and 3rd grades |
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| Ready for kindergarten |
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| Quick trip to the beach last weekend |
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