I am not a bitter person. I do not feel angry at God for giving me a child with severe disabilities. I am ever grateful to have Miss Madeline in my life. For her, I do wish that she could have use of her legs and not struggle with lung disease and the many other complications that are a ripple effect from spina bifida. For my sake, I don't wish anything to be different, because through this precious little girl, God has worked miracles in my life and has blessed me abundantly. And when I am tempted to worry, my Scarlet O'Hara personality kicks in, and I just think, "I'll worry about it tomorrow." Better yet, why worry at all. I can't see the big picture, but I can handle today, with God's help.
Except just now. My late-night confession is that I was just now cathing Maddy and changing her diaper, and I scooped her up to cuddle her little diapered body before putting her pjs on. Just the way my arm covered her severe kyphosis (hers is almost a v-shaped curve in just below the middle of her back), I could see how awesome she'd look with her back perfectly straight. I even switched arms so that I could look at the side of her face with only the oxygen tubing and not the feeding tube and all the layers of tape besides. Try as I might, I can't remember holding my other girls and appreciating the perfection of their little bodies. I'm sure I did, but I can't remember. I think Maddy's little crooked feet are absolutely adorable, especially when the tiny nails are freshly pedicured (not professionally, mind you--just mommy love!), but for some reason I've never gotten used to looking at Maddy's back. Probably because it's a huge issue for her--she doesn't lay flat on her back (in midline), she cannot sit up tall and straight or for long periods of time. I just wish that I could make it all better for her and I can't.
Ok, enough of that, and I feel better now that you let me share that. I hope that I haven't scared all my readers off with pure honesty. At any rate, the song that is running through my head right now is one our choir sings (beautifully I might add!). I like the second verse especially: "Some midnight hour, if you should find you're in a prison in your mind: Call out His name, defy the chains, and they will fall in Jesus name! I bless your name....." I think I'll move that one up on my play list so you can listen and enjoy while your reading this. If you're on the hunt for some meaningful songs through difficult times, here are some more that I love: Larnelle Harris singing "If not for the storms"; "Something Happens (when I mention your name)"; "How can I keep from singing your praise?"; "Untitled Hymn (Come to Jesus)"; Steve Green's "Be at rest"; "So you would know" and "Thou, oh Lord" by Brooklyn Tabernacle Choir; "Who can satisfy?"; "Revelation 19"; David Phelps singing "No more night"; and so many more. Music is a balm straight from God, I've come to believe. I'll never forget singing "How can I keep from singing your praise" with the choir the Sunday after we had the ultrasound that altered our lives forever, and I just felt praise bubbling til I couldn't stop the tears streaming down my face. And just thinking about it is turning my wishful/sad/I'm-very-tired tears into happy tears once again. God is good.
Good night, my friends.
8 comments:
I appreciate your honesty, I don't know how I could live in your situation, but you have sure been an inspiration to me. I'm sure God has used you in many more lives than just mine. Thank God for somone like you who is honest about their feelings and emotions!
I too appreciate and find encouragement in honesty! The place I can't find it is in the one who appears to have it all together, and never lets on otherwise (though the only one their really fooling is themselves). I've always appreciated people who are "human." I think I understand you right in that .... it's so much for yourself that you hurt, but for your precious little daughter. You can deal with it, but wish she didn't have to. But then again....whatever hurts a child hurts it's mommy (sometimes worse!). Wish I could make it all better too....but the best I can do is offer you a long distance hug. Love you...
I LOVE your playlist, Pam! Sometimes I'll just open your blog and leave it open so I can listen to it while I work!:)
Thanks for the inspiration!
wow. you made me cry! What a powerful post and with the music playing in the background...awesome! Love that song. I'll have to listen to the others sometime.You are an amazing person Pam, I don't know how you do it all, but I'm proud to be your sis-in-law and love you bunches!
O Pammy Jo! It doesn't take much to make the tears come these days for me! But your post was so very precious. God's ways are far beyond our understanding -- however we do know that Maddy Kate's mommy is absolutely the best!! You are an inspiration and I love you dearly. I guess you know how I feel when I say I wish I could take away my little girl's hurts too! Keep singing ~~~
Pam, What a wonderful post. I thought I was the only one who suffered from Gone with the Wind personality. I usually slip into Clark Gable as I'm talking with customers and say, "Frankly my dear, I don't give..." :-)
Pam your honesty was an encouragement to me!! It shows your are a very real person. What an inspiration you were to me as I read your blog about little Maddie. What a precious little girl she is..God has something very special for her little life.
Yes, my eyes were wet with tears, too.
I'm glad you are able to be honest. And longing for Maddie to not suffer from these afflictions is, in many respects, just a reflection of longing for Heaven...that perfect place where all will be right, no sufferings, no tears, no disease. Bless your heart.
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