PLEASE NOTE THAT THERE IS A VIDEO MESSAGE AND BIBLE VERSE FROM MELINDA BELOW THIS SHORT UPDATE FROM OUR FAMILY. 🙂
Hello, Faithful Readers of Melinda’s Blog! This is Melinda’s older sister (Melissa) here. As some of you may have noticed, there has been a lull recently in Melinda’s blog posting, and we wanted to make you aware of what has been happening so that you have some context for her video message. On May 5th, Melinda went to the Children’s Hospital for her regularly-scheduled visit. She had been noticing some changes in her body, particularly in her leg. She described her legs as “heavy.” While at the hospital, her legs stopped working and she has been unable to walk since. She was requiring in-home aides day and night prior to this, but now with this change she needs a minimum of two people assisting her at all times. She was admitted to the hospital for a few days and has since been transferred to a nursing home (8 miles from our parents’ house) with the help of her doctor. In addition to her leg troubles, her eyesight has also rapidly declined to the point where she can no longer see to type on the computer, even with her magnifying glass. She wanted to give you all an update, so we have recorded this message from her. We have transcribed Melinda’s video message for you all below as we know that her voice change due to deafness can be hard to understand sometimes, and there may be those of you who would just rather read than watch. In the future, all of Melinda’s blog posts will be transcribed from video, but this is probably the only time we will actually post the video as well. The video files are so large and take such a long time to upload. We had trouble getting it to post. For this transcription, I have typed out Melinda’s speaking word for word, including the fact that Melinda was crying during the video as she struggled to put her deep and raw emotions into words. I have included all of her pauses and thinking phrases in the transcription such as “um,” “you know,” and “yeah” because we are also including the video with the transcription for this post. In the future, those sorts of pauses and thinking phrases will be omitted to help with transcription and the flow of reading. Other than that, all of the words in her posts will be Melinda’s own. I expect that most of her blog posts coming up will be given through a great many tears. She is being so brave.
Melinda wanted us to share the verse Job 23:10 with you along with her video message.
Job 23:10 —
“But he knows the way that I take; when he has tried me, I shall come out as gold.”
Here is the link to Melinda’s video: https://vimeo.com/128215277
I would encourage you to watch the video first and then read the transcript after, if you are able.
Hi, Everyone! It’s Mel. I just wanted to say thank you very much for your prayers for me and, uh, my family over the past few days with all these changes. And um, just wanted to give you a little update on things… how things are going. For one, it’s been one of the hardest changes that I’ve ever had in my whole, you know, past 13 years with this disease. And um, you know, even though I felt that God was preparing me a little bit in the mind with different things… different blog posts before, different, you know, dreams I was having, and different things I was learning… I just never expected some of the ways of the things that I was praying for, like getting more help at home, you know, so Mom can do more things.
And, you know, I could feel things in my body changing. I knew, you know, my left leg was getting a little… little bad, but I didn’t think at the time that I would have, you know, any problems with it. And, you know, I obviously have known that my eye has been going down, but I never thought, you know, all the combination of everything. But it changed so fast! It just, overnight! And, um, (sob) it’s been hard. (through crying and tears) You know, you go from being, you know, able to do things like pick my own lunch, and what I want to drink, or when I want to go to bed, different things like that, to um, you know, all the sudden feeling like I have to follow, you know, “the code.” Everything else here, they do, um… you know, all at the same time. You know, everyone eats at the same time, we all eat the same meals, you know, we all go to bed at the same time. And I just… I’m not… I haven’t transitioned into that.
And I’m really struggling with being a younger person here, and, um, trying to still be that younger person and not be jealous of these older people who have had their lives to live. And now all of the sudden, you know, I’m here like one of them. And not being able to do things that I’ve wanted to do like, you know, still be with my family, and have family meals (crying), and, (sob) you know, stay up talking, and different things like that.
And I’ve been very blessed with, you know, already friends visiting, and my family coming, and different things like that. But it still gets very lonely here when… when people leave. And (sniff) I’m just really struggling with (sniff) the thoughts of the… um… I have to be here for the rest of my life! And (sobbing) I’m already sick of bedpans and having to wait otherwise to use the bathroom or, you know, brushing my teeth in the chair cause I can’t get up to use the sink. And, you know, different things like this. And (sigh) I just sometimes think of, you know, if this is… if this is seeming like its only been… seeming like it’s already been forever, then… you know.
I’m just really struggling with (deep sigh)… being here. I just… (sniff) having so much time to think, because I really can’t do much with the lighting in my room during the day time. And I like try to do different things, but it’s not like home where Mom… I can just be like, “Hey, Mom!” She comes around and helps me pick up my pen. You know, I drop a pen here and I have to wait. And there are so many other people that have needs too. And I just go from struggling, like I take too much time… to struggling to… like, I wanna be still be doing things… you know.
And um, (sigh) I’m also struggling because I’m having a really hard time with my vision going down. I’m having a really hard time reading my Bible on my Nook, and even seeing my pictures in my prayer journal. And sometimes I have a really hard time sleeping at night. And I know… um… (through tears) I know I’m going through some spiritual things (crying), even though I have been trying to, like, you know, remember Bible verses and sing different songs in my head. I just… (sniff) I’m really struggling with that aspect of knowing that sometime I’m going to have to stop reading my Bible, and realizing that maybe, like, I should have (sob) hidden more of God’s Word in my heart. And I don’t think (deep sob)… I don’t think I’m ready, ready for this.
I just… (sob)… as much as I see how God has planned it, and He is going ahead of me (sob) and planned different things, like (sniff) having, you know, different people here, you know, ahead of time. And I’m, um, you know, in a very good spot, and I am close to home, but it’s not the same. And just, (sniff) still having a hard time trusting that, you know, I still have a purpose. (sob) Because right now I’m really struggling with (sniff) just sitting around all day and feeling like I’m not doing anything. I just… it’s a mind thing, and that’s where I’m really struggling with that. And I really… I miss… I miss just the way things were. But you know (sniff), um… you know, when I stand, I’m supposed to, you know, “lean forward.” Because, you know, when I lean back it only makes it harder for the person helping hold me to, you know, get to the potty chair or something. And I have to lean forward, and I know that, you know, this is kind of the same in some aspects. I can only lean forward, because… and, you know, for some reason I don’t understand. (sob) And I know that, you know, (sigh) God will keep me going forward through it. And I can’t physically… I can still see, but I can’t physically see what comes next. (deep sigh) But I just have to keep “leaning forward”… trusting… trusting that, you know, that the new direction has something. And that I’ll still see it in my heart, and spiritually too.
And I would just like to ask for some prayer for some (sob)… um, some peace (sob)… um, because it just… (sob) it just came so fast! (through crying) And I knew, um, changes were happening, but usually they are slow changes. And it’s just been really hard adjusting. And I just miss family, and communication, and living outside, you know, not only just the chair, but just outside. Doing things like I used to be doing. And if you can just continue to pray for the peace for me, and the transition, and for my family too, I’d really appreciate it. And I do thank you for all the prayers and everything… and flowers, and gifts, and visits, and encouraging notes that you’ve already sent. I am very blessed, and I’m trying… I’m trying to see that, and, you know, keep that in mind. And I just wanted to thank you for that. And I want to keep you guys updated. (nodding) And, um… yeah.
I do hope that, um, you know, in time… (deep sigh)… I can blog about some other things that I’ve been, you know, thinking and learning. And hopefully, you know, that God will show me soon, (sigh) you know, maybe more about a new direction. So thank you again, and um… I’ll, um… talk to you later!! (smile and laugh)
5 responses to “Leaning Forward – Job 23:10”
Have read this through many tears. My thoughts are with you and your family Melinda. I know how cruel NF2 can be. Please try not to lose faith.
Leaning forward with you, dear one. Thank you for sharing your beautiful, heartfelt feelings. You are loved more than you can imagine. Praying for peace.
I’m almost at a loss for words. What you have been through and are going through has been such an enormous load. Im amazed at the strength and good attitude that you approach it all with. You are amazing and I see your heart and hear the pain and fear and disappointment that you feel, but despite that you keep your amazing faith in God and positive attitude. God must really have something big planned for you to do on this earth.Excited to see what it is. May you be blessed and at peace in the middle of your turmoil.
Melinda, you have my prayers. May Jesus’ love be your constant companion and greatest reality. Love and many hugs to you and all your family. You are all so precious to me.
Melinda, you are such an encouragement to me. You do have a purpose! You encourage so many people and you uplift our Lord. May you always feel Him close to you. You and your family are in my thoughts and prayers. May is NF awareness month. I am trying really hard to get the message out about NF so others can learn about our disease/disorder and one day I know there will be a cure to End NF once and for all! You are loved so much by Jesus!