The Jones Crew is finally home and taking a vacation from our many vacations. We had a great time on all our adventures but it was a reminder of how much things have changed. It has been extremely hard to watch Carter physically diminish week after week. He is unable to do pretty much anything without assistance these days. Poor Carter has gained roughly 20 pounds since this all started and it makes it even more challenging for me to assist him as easily as I used to. I praise God for keeping me as strong physically and mentally as he has but I’m not going to lie, it is getting harder and harder. I have to lift him quite a bit now and it is beginning to take a toll on my body. The other big challenge for me has been the fact that he wants only me. I love that he wants mommy but mommy is wearing thin. This has also been challenging for James, to have his once extremely outgoing, athletic little boy who always wanted Daddy, now barely able to move and always asking for mommy. James has been a tremendous help but I can tell he wishes he could do more. Landon has also been struggling with all of this. He began crying the other night when I put him to bed saying “I miss playing with Carter the way I used to. It’s just not the same.” His next MRI is scheduled for July 29th. Based on that scan we will be making some very tough decisions. For now we are just taking things one day at a time and we will be continuing to meet with the doctor every Wednesday to adjust meds as needed and have his weekly blood draws. I pray every moment of every day that God will work a miracle and heal our precious angel. I don’t understand why any child should ever go through this much pain but trust in the fact that our God is in control and has something planned for him that is greater than my understanding. Please continue to pray for us all. We need it more than you could ever know. Music has really been comforting to me these days. I was listening to K Love today and heard “Pray” by Sanctus Real that really spoke to me. I bow my head to pray, I don’t know what to say I’m not sure how to fix the things I am dealing with I’m in a desperate place, I need to share the weight But I just don’t know how, to let it all pour out Though I’m silent, my heart is crying Cause I was made to come to You So I pray God I need You more than words can say Right here in this moment You know my heart, You know my need You know every part of me So even if it’s just to speak Your name I’m gonna pray
Posted on: Mon, 08 Jul 2013 02:36:48 +0000
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