My Life with NF2

Dictated to Mom on July 19, 2015

I am finding that as I sit I can become real antsy! PT and OT only work with me only about an hour a day, otherwise, I just sit in my chair. Because I’ve had this urge to be outside while it is summer with nice weather and just want to walk and do things like I did back in the days of college – I thought of swinging! I brought up my genius plan one day at therapy much like a baby swing; they should have an adult-sized version. The front could open and one could be put in there much in the same manner as if moving to and from the potty chair. Once you sat down, you have the back and then they would close the front part and secure you in. Then, you’re free to move your legs and give yourself a little swing. It’s not only great for your legs, but for your Abdomen and upper strength as well. It’s not like you would be going very high, but it would be great exercise. It would give you a little something to do during the day. I’ve never been one to swing very high, and I’ve never been one to jump off the swing as if flying through the air, but some odd reason, thinking of swinging made me want to fly! Different songs then came to mind and I envisioned flying in the air! Mainly in a part just flying above it all and being free!

As I thought of these songs – I think it is something God wants me to learn – that I need to wait on Him and put my hope back in Him alone. I do not feel it is always going to be easy and I feel there are many long days ahead – maybe, I’m focusing too much on the desire to be free when I really should be focusing on just trusting that He knows when my days will be fulfilled. Until then, I’m trying earnestly to keep my focus on praise and thanksgiving and praying for others! Hope is part of His trying to carry on.

Isaiah 40:41

 but they who wait for the Lord shall renew their strength;

they shall mount up with wings like eagles;

they shall run and not be weary;

they shall walk and not faint.

Abba Father

“Abba Father” was written by Price Jr., Otto Montgomery / St. James, Rebecca / Tjornhom, Tedd.

I’m feeling like the eagle that rises

Flies above the earth and it’s troubles

Oh yes he knows that there are valleys below

But under His wings there’s a stronger power

Oh Father You are my strength

On You I wait upon

You make the road rise up to meet me

You make the sun shine warm upon my face

The wind is at my back and the rain falls soft

God I lift You high, You are my Abba

Running in this race till the finish line

The only road for me is the narrow

Not gonna stop or even look to the side

When I fix my eyes on You Jesus

Oh Father, You are my strength

Now more than ever

You make the road rise up to meet me

You make the sun shine warm upon my face

The wind is at my back and the rain falls soft

God I lift You high, You are my Abba

You make the road rise up to meet me

You make the sun shine warm upon my face

The wind is at my back and the rain falls soft

God I lift You high, You are my Abba

When you run to far

(And the road is long)

Can’t walk another mile

(He is waiting)

Hope in Him again

(He’ll renew you)

Then you will rise

Gather up your wings and fly

You make the road rise up to meet me

You make the sun shine warm upon my face

The wind is at my back and the rain falls soft

God I lift You high, You are my Abba

You make the road rise up to meet me

You make the sun shine warm upon my face

The wind is at my back and the rain falls soft

God I lift You high, You are my Abba

Do you not know?

Have you not heard?

He gives strength to the weary

To those who hope in Him

They will soar like eagles

Dictated to Mom on July 19, 2015

The other day I had a dream that I was going for a job interview at a car dealership! I was really excited about this opportunity to get back into society and work, but when I got there, the windows were darkened and the doors were closed and no balloons or streamers that are typical at car dealerships. Mom and Megan were behind me . . . Mom said, “Looks like they’re closed.” It was then that I woke up and realized that I was still in bed. After I rang in to use the bathroom, I tried to go back asleep, but was very sad to realize that my days of working out in the world are over.

I’ve been through enough changes over the years to know when something new is starting to happen in my body. As much as I truly desire to be out in the fast paced world, the only thing that seems to be happening at the moment, is the slowing down of my body. I can list from head to toe new and current changes that are happening. Some of them I don’t understand myself – like when I sit in complete whiteness and everything around me “spins”. It doesn’t really make me dizzy, but it can sometimes give me headaches. It’s like a mind game when I’m trying to hold my drinking cup and place it back on the table – I have to tell myself I’m not spinning and try to keep my hands sturdy. I still can’t tell you how many times (giggling) that I have spilled and have to once again ring in for help to clan up the mess!

As I continue to sit, I can get really stiff! There are times when I use Teddy as a pillow and after so long of sleeping, wake up and have a hard time breathing. My neck and shoulders continue to tighten and my lower back continues to cause problems along with my intestines. There are many other little things – it’s getting harder to chew and harder to swallow – harder to digest food and harder to use the bathroom properly. There are some days when it is full of visitors or just energy, but there are other days, that are just difficult and I feel like I wasted it away by sleeping.

Physical and occupational therapy continue to work with me which keeps one moving and stretching. Las week, they wanted to try a new walker. It was one that I had to lean forward with my left arm, while my right arm was on a normal handle. I was a big crying mess while walking down the hall and I’m sure everyone saw it , but at the moment I did not care. In my mind, all I could think of was how uncomfortable I was and I didn’t like starting new.

When I got to the therapy room, I sat back in my wheel chair and asked, “Why do we have to always try something new?” They finger tapped on my arm that they just wanted to keep me working. They asked if I was scared of the new walker? I said “Yes” . . . even though I knew they wouldn’t let me fall! As we started doing stretches on the mat, I talked with my therapist about a video on line where a kid goes around at a camp talking then randomly turns around and says “trust fall” expecting people around him to catch him. I’ve never been a fan of “trust falls”, but my therapist brought up a good statement that I took more like a question – she said – “it must be hard for you to trust.” In my mind, I knew she was right so I said, “YES”!

I know that everyone around here is really trying to help me and I have to trust that even when it is difficult as I sat thinking, I was talking to god and asked Him if trust is what I am supposed to be learning because there are some nights I cry into Teddy and tell god I don’t know how much more I can take. Then a new day begins, and I get bak in my chair and as I start thinking and praying, I have to trust that when I would still rather be out in the world, but my time of being out in the world might be over. I have to trust that while I sit that God will keep reminding me of the good things that I have had and that He will continue to hear my prayers and answer them in His perfect timing.

Proverbs 3:5,6:

Trust in the Lord with all your heart,

and do not lean on your own understanding.

 In all your ways acknowledge him,

and he will make straight your paths.

Dictated to her Mom on July 7th, 2015.

Home has always been a place where I have always felt safe, comfortable and loved. The more that I sit here in my room, the more memories of the good times we have shared keep coming back! In the more recent times, since moving back with my health starting to decline, especially over the last year and a half, at a more rapid pace – thoughts of not being at home always really scared me. When we started home health aides caring for me, home was a little bit different in having someone else in the house along with the family, but I knew in the hours that they were there, it helped the family do things they needed and I had someone who could focus on my needs such as getting to the bathroom. It wasn’t until I was transferred to the nursing home that I realized how many needs I have. Since my days at Children’s Hospital, I have gone fully blind and I know my health overall is still declining.

It was even before Dad and Mom went on their trip, talks of being able to go back home for even one day were discussed, especially with my PT/OT. Mom and Dad wanted to take me home for the 4^th of July to enjoy a barbeque picnic with the family. The day they came back from their trip I started working on safe transfers for safe transport from my wheelchair to the car seat by Dad. Mom and Marcia helped with the safe transfers to the potty chair. They all did great and now I was all set for the day! I started praying in advance for that day that nothing would hinder my going and that it would be one, like the others in the past, of great memories. God definitely answered those prayers and when I returned that next day, I started to see things of why I am here through different eyes.

Going home was a little weird at first. I could see it in my mind, but it was a lot of asking which direction I was facing and going by sense of touch. When we got inside, Dad said I should call for Muffy (the cat). Muffy, of course, still thinks home is my bed! So, mom wheeled me to my room so I could give him a petting. I started crying because I could not see him, but I could feel his ears and gave him a good scratch under his chin! I could also tell he has a very healthy appetite because he feels quite large! My room is the only thing I cannot envision. The only thing that remains is my bed, as everything else is at my room in the nursing home. So as we left there, I still envisioned the room as it used to be. The rest of the evening seemed to flow. I sat on the recliner chair with my feet up and the sun did not hurt my eyes as it did in the past. We sat out on the deck while Dad got the grill going and discussed the trees, flowers, birds and mom’s garden. When dinner was ready, I cannot tell you how amazing it tasted! Dad’s grill master skills, mom’s pasta salad and fresh fruit was all wonderful. I stuffed myself that night! It was GREAT! Even ended it with those obnoxiously delicious sugar cookies with messy blue frosting on the top. I had a cup of coffee that contained Almond Joy creamer—the best ever! As we finished talking and it got towards time to go, I guess there was a really pretty sunset. We took more pictures, which, of course, I will never see, but facing in the direction of Mom’s garden and trees—in my mind—I have a pretty good idea of what it looked like!

I really didn’t want to come back, but the next day I did some thinking. It took going home for me to see how much work I really do need now that I am fully dependent on everyone for everything. I know my family loves me with all their hearts and this has been just as hard on them as it has me. I know even if I were to be at home, they would do anything for me just like they did on the Fourth of July, but I now realize that my needs can be taken care of by others here too in order that when my family and friends come, I have more time to spend with them, especially now that communicating takes so much longer!  I have also realized with living with half my things here at the nursing home and my other half of things at home—it’s a strange feeling to realize that this world really is NOT my home. Ginny Owens wrote a song called “If You Want Me To”. In it, she talks about how she doesn’t understand why she was brought to the place of where she is at this point in life. She says, “It may not be the way I would have chosen, when you lead me through a world that’s not my home, but You never said it would be easy, You only said I’d never go alone.” The more I sit and talk to God, I know I am not alone . . . the more I sit and squeeze Teddy and think of all my family and friends, I know I am not alone. “Hope” now has a different meaning, it is not necessarily where I sit, but how I view what my home in heaven will really be like and that brings a lot of comfort!

John 14:1-3

“Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.

Dictated to a friend on Monday, June 29, 2015:

The day after I was told I would not be going home, Dad bought me a present from the Children’s Hospital gift store. As I unwrapped it from the gift bag, I started to pull it out. It was black, with white, it was some sort of stuffed animal. I was pulling it out from the backside, so I couldn’t see the face. From that end, I thought maybe it was a skunk (laughing)! I said, “It’s a…” and almost said, “skunk,” but when finally pulled it out all the way, I saw it was a cat. I said, “Thanks, Dad!’ The reason Dad bought me this was because I was upset I wouldn’t be able to be at home, where Muffy was. I was so used to seeing Muffy everyday, and him sleeping at my feet at night, plus the thought of just not being at home was really upsetting me. I usually don’t sleep with a stuffed animal, but there at Children’s, I started snuggling with a cat. Being a few years short of thirty (laughing), I felt I needed to justify why I was sleeping with a stuffed animal to the younger PCA’s as they helped me get ready for bed. I started explaining it to one man one night, and thought he might think it was kinda weird. I guess he probably was only in his early twenties, but he wrote on the green marker board, “That’s cool! How long have you had your cat, Muffy?,” and started a conversation about it. It was then that I decided to stop telling people why I slept with a cat stuffed animal and when I transferred here to the nursing home, I started using the cat stuffed animal as a pillow to prop up my chin at nighttime.

Since then, I’ve gotten a few more stuffed animals. Ironically, friends from home sent another cat: it’s orange and white, and from what I could tell earlier, when I could see color, had a pink nose. I thought this was kinda funny because there’s a cat that hangs around our house that I had named Sebastian. I don’t sleep with Sebastian, but he hangs out on the bookshelf with another stuffed animal present I got from my cousin’s prayer group. It’s a white bunny with long ears, and the night I got it, I was asked if I wanted to sleep with it (laughing), but I didn’t have any extra arms, so I said, “No.” I didn’t have any extra arms because of Teddy.

A few weeks ago, Mom and Dad were gonna be going on a week vacation. It would be the first time that I would be without them since moving in this place. Not that they have to, but they make it a point to come in every day to see me, and I was getting upset that I would be without them for so long. Mom and Dad helped set up people to come and visit so I wouldn’t be so lonely while they’re away, and by the last night, I was feeling pretty strong that I would make it while they were gone. The night before they left, Mom came a littler earlier than Dad, so when Dad came, Mom went home, or so I thought (laughing). When I finished talking to Dad, I beeped in to get help getting ready for bed. I wasn’t paying attention who was coming in, and felt Mom’s signing name on my forehead. I thought that was a little strange, but it was Mom. She had come back, and plopped something in my lap. I couldn’t really figure out what it was: then, she tapped “bear” on my arm using the alphabet from the communication system. I finally got his face and could see a big nose. “Thanks, Mom!” I said. And as Mom is leaving, she said, “This is something for you to snuggle with when you miss us, or just need something comfortable while you sit.” Mom was right. The bear was very big to snuggle with, and that night I started sleeping with it under my right arm, with the cat underneath my chin (laughing). The next day after breakfast, things started to set in and I really wanted to talk to Mom and Dad. I beeped in and asked if I could have the teddy bear. Only after explaining a few times why I had the bear did I stop and just started saying, “Can I please have Teddy?” (Laughing) It’s sorta different here, because I am the youngest, and I always cry anyway: I figured I didn’t owe an explanation of why I wanted Teddy. Since that week, Teddy has now become something more than just something to snuggle with: he’s sorta like my room mascot (laughing).

There are some times when Teddy causes trouble. He’s so big in the nighttime, as I try to position him with my right arm for more warmth and to brace my head on the right side, he’ll knock my nurse’s call button right as I’m all nice and snuggled and warm; the light comes on, and an aide comes in to see if I need anything. (Laughing) “Oh, sorry!,” I’ll say, “I was just trying to reposition Teddy.” There are also times when I position Teddy on the right side of my wheelchair, his feet or arms will knock into the table where my Tervis’ full of teas are: I’m surprised he hasn’t gotten wet yet, but I’m sure he’s gotten kinda dirty because he has fallen to the floor a few times. So he falls on the floor as I start to heavily sleep against the wheelchair. I try to pick him up off the floor, but usually have to ask for help. I feel kinda bad they have to come in to help do this, but sorta laughed one time when the aide left: I went back to sleeping on the arm of the wheelchair and felt the seat belt wrapped around Teddy (laughing). There are times now where I don’t even ask for Teddy, they just plop him in my lap on their way out the door! Teddy has been a thing of comfort and a shoulder to cry on and something to squeeze when I feel alone.

Lately, I have been having a lot more physical problems. I feel like when Mom and Dad come, my first agenda is to pour out my burdens on them before getting news of what they’ve been up to. I feel bad about this sometimes, because they already are carrying all the things that I can’t do as it is! Plus they have their own things and with the other sisters. Last night especially, I was having a really rough day. As Mom came in sorta late, I started crying and said, “Mom, please stay here a little earlier: where have you been?” She finger tapped to me that Dad has been sick. And then from there I started listening more to what she had to say. Then this morning I was doing a little bit better, but I still was questioning a lot of things. As I started talking to God, I was also drinking my coffee. I was so blinded with the light that I spilled it, even before I really got the chance to drink it. I beeped in and I said, “I hate being blind.” The aide reassured me with strokes on my hair that all was okay. They got me some tissue, new coffee, and put Teddy on my lap before leaving. As I started drinking my second cup of coffee, my friend came in, who I hadn’t seen in a long time. She stayed through lunch and we had a great talk. One of the things we discussed was Teddy (laughing), and also, how my eyes were doing. I gave her a brief update just in general on my health, and told her that I was still frustrated that most of the day all I did was just sit. I think, too, I’ve been going back and forth between still wanting to be home yet knowing I have to be here. I told her that I’ve been noticing the little things that have changed in me. We used to always say, “Bye, love you!,” when leaving, even if it was just going grocery shopping, but here I’ve noticed when I say “Bye, love you!,” I watch my family leave out the door, I surely mean it a whole lot more. I also told her that it has been the same with prayer. It was so easy growing up to say, “I’ll pray for you,” then totally forget about it, but here, when I say, “How can I pray for you?,” I surely want to know. Maybe it’s part of being cut off by the social world until somebody fills me in. As we continued talking, my friend tells me that maybe learning this deeper prayer is part of my ministry here. It all kinda goes back to what Dad was telling me, too, about learning to rest in Jesus. Maybe that’s why I still have a problem with restlessness, because I still want to do things, but realizing more that I cannot.

I did use Teddy a lot while Mom and Dad were gone. During that time, he was more just a shoulder to cry on and I really only talked to God about my own woes. But now, I still use Teddy and as I pray, I try to pray for those requests that people have shared with me. It’s almost like the way that I tell Mom and Dad my burdens: it’s not that Teddy carries my burdens, but he’s almost a tangible way for me to cry out and express my burdens to God. I know it’s old school, but once again, lots of songs have come to mind. We grew up with Psalty, the singing songbook. As a kid, we grew up on the cassette tapes and home videos; most had a storyline involving Risky The Rat, and Charity Churchmouse. But there was another one where Psalty takes his kids on a camping trip. On this trip, two kids get lost. They start singing a song called, “I Cast All My Cares.” I’m finding now that I snuggle with Teddy and start praying, I usually sing this song, because there really is nothing that I can do to help other people’s burdens when I sit in whiteness. For some odd reason, just knowing that I am praying and laying it at the feet of Jesus, it does make my heart a little bit lighter. Like I said, Teddy does not carry my burdens, he only carries my tears, but as I snuggle with him, he does bring warmth and comfort that I know I could get without him, but in some ways, it’s almost like giving God one big squeeze right from my wheelchair. We are told to carry each other’s burdens, but we cannot carry them by ourselves even then. When Mom first gave me Teddy and told me it was something to squeeze when I missed her and Dad, that was something of comfort. And I know that even though I also put a lot on my parents and family and friends, that even then their burdens can be carried, too. Isaiah 66:13 (ESV):

“As one whom his mother comforts, so I will comfort you; you shall be comforted in Jerusalem.”

That’s what makes prayer so special, because it doesn’t matter who is saying it or how deep it is, it all goes to the feet of Jesus, Who knows it all anyway. And so now, I still have my rough mornings and long days, but I am trying to see what is truly important as the world passes by around me. There are always gonna be changes, even Teddy will one day change, and the more that my body does change, the more I am thankful that God does not!

Dictated to a friend on Monday, June 22, 2015:

My sophomore year at CCU, there were three blind girls on campus. Thinking back, I can see myself in a little of each of them. The one I feel had a little vision, like I can still read (somewhat) on the marker board. In chapel, I could see her put her eyes right up to her watch and strain them as if looking at the time. She also had a guide dog, but I never got to meet her. There was another girl, who had long red curly hair; her eyes were closed, but I remember talking to her a little bit as she came to street church a few times. She used a cane but she also touched around a lot with her hand and depended on her friends’ arms. But it was Heather who I remember the most. I don’t exactly remember how I first met Heather: I think it was just on the sidewalk going to class. At the beginning of the semester she used a walking cane and her eyes were also shut. But by the end of the semester, she was wearing big sunglasses and using an automatic wheelchair to get herself around. Heather lived on the bottom of my dorm, so I saw her quite often. And I’m not exactly sure what other health issues she had, but by the end of that year, she was gone.

At the beginning of last weekend, my roommate from college came for a visit. When Calli first came to visit me for my birthday in March, it was right at the time that the first of my independency just to get to the bathroom had first started. My left eye had just barely started to go down, and as we talked on the couch one evening she asked if I was scared to go blind. At that point in time the thought was just so unfathomable, that yes, I was scared, and told her so. I would have never dreamed that hardly three months later I actually would be at this point where blindness was a reality. As Calli came back to visit last weekend, she asked me this time if I was ready to see Jesus. And just the week before, my longings to be free of my sufferings had been so great, I told her yes! But the more that we got to talking, the more I’ve maybe realized that I’ve been viewing it all wrong.

You see, I woke up the next morning after that talk with several songs and scripture in mind, and one was Delirious worship song where he says, “Lord you have my heart and I will search for yours.” All of a sudden, I almost panicked because I didn’t feel like I was ready. The thought had never really occurred to me in that way before, to seek for the heart of Jesus. But then my attitude, as much as my longing still to be free was still there, took a turn. I really asked God, “How do I search for your heart when I can’t read my Bible anymore?” The thing that made me think, too, maybe it was before Calli had been here and Heather had been on my mind, is that Heather recognized me even though she couldn’t see me. I could never sneak past her on the sidewalk without her saying ”hi” to me first. It probably was more so how my ankle came down on the ground, made a funny noise, but still, she recognized me. I thought about this and really wondered how I would recognize the heart of God.

It’s been over a year since I’ve read the books, but in CS Lewis’ books, The Chronicles of Narnia, Lucy asks Aslan on several occasions why he didn’t come sooner to their rescue or how she would recognize him at the time she had to leave Narnia for the last time. Aslan tells her that things never happen the same way twice and by knowing him in Narnia she would get to know him in her own world. Sometimes I feel like I do the same to God, and I know that He never does things the same way twice, and with every time something new happens I get to know Him in a deeper way. I think the blindness has become a way for me to really cry out to God because when I have no one else I just simply talk to Him. But still, searching for the heart of God is just something that I cannot fathom for the moment. But I am praying that as I continue to seek, then I will recognize His heart and continue to follow it until He says that I am ready to see past the white veil.

“Who You Are” by Nichole Nordeman

I was certain that I knew you at the tender age of twelve

You’d so often been described by those who said they knew you well

Dark and rugged in your thirties with a smile as bright as your robe

Every teacher, every preacher with the very best intent

Found new ways to hide the mystery replaced by common sense

And to know you was to keep you in my pocket so easy to hold

I know I can’t explain you, I would not even try to

And yet it’s clear that you are here beside me

I marvel and I wonder so near and somehow still so far

What makes you who you are? Who you are?

It is easy to insist on what is packaged and precise

And dismiss the clear suspicion that you’re bigger than we’d like

It is tempting to regard you as familiar in so many ways

I know I can’t explain you, I would not even try to

And still it’s clear that you are here beside me

I marvel and I wonder so near and somehow still so far

What makes you who you are?

I’ve tried to draw these lines around you

A definition or an absolute

But I could not be satisfied with black or white

There is so much more there is so much you

I know I can’t explain you, I would not even try to

And still it’s clear that you are here beside me

I marvel and I wonder so near and somehow still so far

What makes you who you are?

I marvel and I wonder so near and somehow still so far

What makes you who you are?

It’s a mystery

It’s a mystery

Dictated to a friend on Monday, June 22, 2015:

I’m finding these past couple weeks I have been struggling with my mornings. More so the past week and a half because in nighttime my sleep has been restless. I am not sure why, but as my vision continues to go I am starting to get more dizzy feeling, even when I lay in bed and it is somewhat dark. I’ve been having weird dreams right about the time that I’m supposed to be getting up, I’ve been talking more in my sleep and there is some evenings where the bed pans never seem to end. I’m finding by the time that I get up in the morning I have been thinking back to when getting ready used to be more than just getting ready. The other morning especially, I was a bit upset. I had to hold in my tears until after breakfast because then, in my whiteness I just started crying. Like a lot of other things I am forgetting, I was trying to remember what it was like when getting ready in the morning was a fun experience. Like all the times when you could get out of bed and brush your teeth and see what was in your closet and have several options for the day.  Here I can’t remember what colors I have of my t-shirts, and really, unless I have a specific one I do remember, just go along with whatever they pick out for me. There used to be a time when at home my health care aide would even pick out some socks and jewelry to go along with my outfit. Not that any of that essentially matters anymore, but I think the other day what really got me was my hair. No matter how many times I tried to explain how I like my hair clipped back, it can never be done right. No one can do it just like Mom. And it was in that moment that all a sudden I got the homesickness again and just really wanted to be out of here. The thing is, that I know that I cannot, but as things progress, so does this white of a veil in my eyes, that in the morning time simply still cry out to God and say, “Can I just please break through this veil and see color again?”

The color white is usually one that represents purity, like a bride, which is why I thought of seeing through a veil. But the white in my eyes I consider a stumbling block. It will fade from the dark to a light color, and to where I can kind of make out shadows if people are wearing dark clothing. In my hours of sitting in whiteness I still ask God what comes next because I can’t see anything past this veil. The other morning I did remember a poem that I wrote in high school that’s called Crystal Clear Carpet. It says,

“Life is a journey

Starring on crystal clear Carpet

Dipped in heaven’s colors

To each of us a gift.”

Sometimes since then, in the way that I feel like I’m spinning in circles, even though I just sit, I try to think of all the things of how life is still a gift. In Michael W. Smith’s song, “This Is Your Time,” came to mind in which he writes,

“This is your time

And this is your dance

Live every moment

Leave nothing to chance

Swim in the sea

Drink of the deep

Embrace the mystery of all you can be.”

I don’t know how to embrace my mystery just sitting in a chair in whiteness, but today, walking back from physical therapy, not being able to see anything in front of me, but trusting my physical therapist’s arms around me with every step that I take, could be just a little bit of that mystery. And I could see in the greater picture that also might be my walking through this life, as if seeing through a veil might also be trusting that one day that veil will be lifted and now I can see color. Until then, I will just keep seeking even if I cannot see with typical eyes.

Jeremiah 29:11-14 (ESV)

11 For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. 12 Then you will call upon me and come and pray to me, and I will hear you. 13 You will seek me and find me, when you seek me with all your heart. 14 I will be found by you, declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile.

Dictated on Tuesday, June 9, 2015:

Upon coming here, I had been working with physical therapy and occupational therapy almost every day. At first, I was really upset at how the things were going because we weren’t doing any leg exercises that I had been hoping for. Over the past few weeks, a lot of those plans have changed. You can now see a blind girl wheeling herself down the hallway to the therapy room; of course, someone is always behind me, steering me, because once I ran into the wall and I don’t want to run into anybody else for that matter, either. We are now focusing on doing a lot of stretching, as well as leg exercises. As far as OT, they are trying to work with my shoulders and upper body to keep it flexible and to strengthen my hands. All in all, being able to move around more has been of a great thing.

On Sunday’s session, I was in between two metal bars with my hand grippies practicing going from my wheelchair to a standing position. It was really short, and I was really bummed. Then yesterday, in my session, we did the same thing, except this time, she had me take my left hand off the bar and re-balance myself. As I stood there, a thought came to mind and I told my therapist that I don’t remember what it’s like to stand without holding onto something. At the end of my session, they thought I was ready and asked if I wanted to try walking using my walker.  I thought the challenge would be good and walked down the hallway 125 steps. Then today I did the same thing, except this time I walked all the way from the therapy room back to my room: 225 steps, and boy, did it wear me out.

After they left, I had a few minutes to think before some friends came in. I started thinking about other things that I don’t remember: I don’t remember what it is like to get up from a chair without pulling yourself up and I don’t remember what it is like to sit on a normal toilet seat with no handles. I guess there are a lot of other things that I do not remember, such as eating and being able to see the utensil go towards your mouth. These are just a few of the personal things, but I also realized that I am not remembering some of the outside things such as some animals and flowers. There is some things, too, that I do not remember that have to do with sound: a lot of these are also outside, such as birds or crickets or even Muffy’s meow.

As I continued thinking, I guess this is what bugs me in dealing with my vision, because I do not want to forget what people look like.  On Sunday when Landon was here, I was holding him before Melissa and David left. In my illuminating white eyes I couldn’t see Landon at all. I know that I have pictures in my mind, but I will never see past those still pictures. Then the last thing I thought of was that I do not remember what I look like, not that that matters entirely, but still, I don’t remember what it is like to walk into the bathroom in the morning to brush your morning breath and view the bed head hairdo! Some of these things I would love to go back to the days of old before I had walking problems and vision problems and was just living a pretty normal life, but I know that the days of old are no more. Things have changed and there is no turning back now. Yesterday was a very dark day as the sun was very overcast. I sat after breakfast and was singing some songs while I waited for my coffee. Cindy Morgan’s, “I Will Be Free,” came to mind. Right at the end of her second verse she says, “When my eyes behold the One who bore my lot and paid the cost I will be free.” Sitting there somewhere in the darkness, I again started to cry because I realized that my vision here on earth has failed me and even though I can see just a little it will be nothing compared to when my eyes will finally fully see again. And in that day, the first face I will be seeing is the one of my Savior, and I won’t need to wear sunglasses even though He will be radiant in light. And I won’t need to use my walker to run into His arms and I am hoping that the first words I will hear Him say is, “Well done, my good and faithful servant.”

These days here seem so long, but they will be nothing compared to all eternity, and that thought is what has been giving me hope and that is why I am going to try my very hardest to continue even on the dark and lonely days.

“I Will Be Free” by Cindy Morgan

The mountains are steep and the valley’s low
And already I’m weary but I have so far to go
Oh, and sorrow holds my hand and suffering sings me songs
But when I close my eyes I know to whom I belong
And who makes me strong

And I will be free, I will be free to run the mountains
I will be free, free to drink from the living fountain
Oh, I’ll never turn back ’cause he awaits for me
Oh, I will be free

A wise man, a rich man in pauper’s clothes
A shepherd to lead us through the land of woes
Though many battles I have lost so many rivers yet to cross
But my eyes behold the Son who bore my loss and who paid the cost

I will be free, I will be free to run the mountains
I will be free, oh, free to drink from the living fountain
Oh, I’ll never turn back ’cause He awaits for me, oh
Oh, I will be free, oh

Oh and I’ll dance on silver moonlight and I’ll walk through velvet fields
Oh, and I’ll run into the arms the arms that set me free

Oh, I will be free to run the mountains, I will be free
Free to drink from the living fountain
Oh, I’ll never turn back ’cause He awaits, oh
I’ll never turn back

Don’t you ever turn back
‘Cause someday, someday we’re gonna see
That we will be free

Dictated on Tuesday, June 9, 2015:

The beginning of last week I found myself grasping the reality that my vision was really fading. Just the weekend before, Mom had given Melissa the two photo albums I had told her about in which I had pictures of family and friends and pictures of Colorado in which I thought I could look at in the evenings when also going through my prayer journal in the main lobby.  What I found was a bad frustration. I could not see any of the pictures in the photo album and even then the pictures in my prayer journal were starting to get a bit hazy. I gave Mom both my albums and my prayer journal to take home. It was then, that I had nothing to do in the evenings, I started clinging more to my parents and family when they would come to visit.  In one evening as I saw my parents fade out the door everything in my heart went with them and in my mind I was screaming, “Take me with you!  Please!” And all I wanted was to run after them but I couldn’t. It was over the next few days that I was doing a lot of thinking and praying. I had been having some bad dreams and some rough nights and was still having some frustrations about being here in general.  But through a series of a few events God started showing me a little more about who He is and His faithfulness.

It was over these days that I remembered back in December when my eyes first started failing that I posted myself a question on whether becoming closer to God meant going blind. It was a question I said I couldn’t answer in words and I still don’t think that I can. But over those days of frustration last week, and lots of tears, I had some songs and Bible verses come to mind.  One was Michael W.Smith, “Pray For Me.”  Coming out of the second verse, leading into the chorus, he writes, “I know that through it all the hardest part of love is letting go, but there is a greater love that holds us. Pray for me and I’ll pray for you.” As I started singing that song over the next few days, over and again in my mind, I could see that probably the reason why I was clinging so hard to my family was because I didn’t want to lose their faces in my mind. Faces are important to me, probably because I’ve always read lips. Maybe it’s because I’ve never seen God face to face in a tangible way that I could see my family’s faces, I guess it is hard at some point to let go of those that I love so dearly here on earth and follow the One that loves me the most.

I also got to thinking about the way that Jesus called His disciples: He said, “Follow Me,” and they left everything. I still don’t understand why, when God said, “Follow Me,” and I did, that I ended up here, but sometimes, it is not seen clearly until later down the road, and that is where I feel I am right now. I am trying with my whole heart to let go of everything here on earth, even if that means letting go of seeing the faces that I love, the people that I love, to follow every step of the days ahead.  It is not that I am completely at loss of everything: I still have been surrounded and blessed, but the most important thing is to keep hold of Jesus through prayer more than trying to cling to those around me. To know that even Jesus prays for me is something quite special and that is why I must continue to follow, because He knows what is best, even if I can’t physically see it. The days ahead will still be long, but there’s a greater love that holds me through it all.

Last week we started working on a communication system that Melissa and Marcia put together as a way for me to still communicate my needs and be in awareness of what is going on (somewhat) for if and when the day I lose completely all my vision. I learned about ten of the objects and a few of the hand symbols and practiced them in my mind over the weekend, thinking I would never get this down. Melissa came back down on Tuesday in a severe thunderstorm just to be here for the next few days so that she and Marcia could finish teaching me everything. They also would teach the nurses and aides, my PT and OT, and others who help around when they would come in the room in order that they would know the system, too. There are many nurses and aides here who rotate days and shifts, both days and nights; I was afraid that there would be a lot in the two days that would not get to know the system. However, working both days, all day long, Melissa and Marcia taught more and more staff, and this also gave me a chance to practice with them, as well.

Melissa and I worked hard on Wednesday but didn’t accomplish as much as we wanted until Marcia came that evening. Thursday was a really fun day because a cousin visited and we worked really hard and I finished learning everything in the system. I got in a lot of practice with more staff, but I also got to spend a lot of time just talking to my sisters and cousin about family. We also got to spend a lot of time outside, because it was a beautiful evening. We took a lot of pictures and they pushed me in the grass. I don’t think I’ve ever held onto my wheelchair so tight in my life!  As the sun was starting to go down, Mom and Dad met us and we went back inside. After a horrible night’s sleep, Friday I was pretty miserable, but I was thankful that Melissa and Marcia and a friend were here. After another full day, I got in bed for some reason started crying because I didn’t want to lose people’s faces in my vision. I think it was because I was seeing Melissa fine, but was having a harder time seeing Marcia. Marcia pulled out my prayer journal and we flipped to some pictures of us together and I looked at them in my magnifying glass. We all talked for a bit then she left. Melissa and my little nephew, Landon, spent the night in my room so that then Melissa could teach the night staff and early morning staff the system for when I rang in the nurse’s button.

I slept fairly well that night and then called the nurses too many times. Usually, I can tell the morning by the sunlight that comes in the window even with the shade down. My body’s natural bathroom run alarm clock woke me up what I considered morning but couldn’t tell because it was so, so dark. I asked for the time and got it in the hand signals. I fell back asleep but about a half an hour later, I asked to get out of bed. Usually, the first thing I ask for is my sunglasses because I am blinded by the lights, but this morning I was put on the chair and it was still completely dark to me. After I was ready they asked me by the objects if I was ready for breakfast. I said yes but also I asked if we could turn on the lights so I could see what I was eating. After a confusing message board, I got another one I could read with the blueish lights through the window, “on on on,” meaning all the lights were on or the curtains were open. I said, “Oh no!” and started crying. I am very glad that Melissa was there because it was a great comfort at the moment. She took me through the hallways, which once blinded me, but were now dark. She also took me outside, but to me, it looked like eight o’clock in the evening. Coming back inside, an aide fed me my Cheerio breakfast. Then I just sat, thinking and praying and talking for awhile with Melissa until she had to go home to my parents’ place to refreshen.

Before lunch, I can tell that the sun brightened more and actually put on my dark sunglasses, but the dining hall at lunchtime and afterwards until about three o’clock everything went dark again, but not as bad as the morning where I seriously thought the power was out. Since then, everything now, again, is hazy white. Where even my small part of vision left I am only able to see the blue and dark colors like brown or black. I thought maybe the brightness was from the natural sunlight but I am not sure. I really can’t explain why this morning was so dark and now it is so light and why yesterday it was fine and today I woke up different. That’s just the way this disease works. Whereas before there would be slow progression, now I am seeing that things just happen and it is unexpected.

The thing is, in some ways when I think back, even on just this past week, God’s timing always fits perfect. Even though when I quote Psalms 23 to myself I feel like I am literally walking (more like sitting) in the valley of the shadow of death. But I cannot even describe to you, like I cannot describe to anyone, what is going on in my body for them to understand how much I see how blessed I really am. Even just last night as I was falling asleep I couldn’t stop thanking God for everyone who has helped out in some sort of way, even if it’s just stopping to say hello, or like my family working to communicate. Even just now, the realization that we had just ended learning and teaching the communication system is another example of God’s perfect timing, even in the trials. I am not sure what comes next, as I still can see a tiny bit. But when something does happen I know I will be able to think back and see God’s hand in it all. Thank you again for all your prayers and encouragement. I have to honestly say that if anyone asked what they could specifically pray for, I would just stare at them and say, “I don’t know.” But if you can continue to pray at least for peace in all these changes, not just for me but my family as well.

Love you all,
Mel

Mel with her cousin (also named Melissa!) who drove from Chicago for a special quick visit.

Developing and practicing the new object-based communication system with sisters Marcia and Melissa in preparation for impending total blindness.

Laughing with Melinda through new hand gestures on her knees.

Practicing and practicing the new communication system with sisters and cousin, with and without a blindfold.

Special moments with sisters on Friday night.  Melinda was afraid she was forgetting what Marcia looked like, so she studied a picture of her face in her prayer journal with her magnifying glass before bed.

The morning of Melinda’s blindness.  Melissa and Landon were already with Melinda at the nursing home since they spent the night with the aides (having been alerted by a teary-eyed aide just the morning before to the intense communication struggles the staff was having with Melinda at night).  This perfect timing could only have been God’s grace and provision. Holding Landon that morning greatly calmed Melinda in her moments of blind panic and despair.

Melinda later on that same evening with her friend, Stephanie, who listened to her dictation and helped her type this post.

Dictated on Tuesday May 26, 2015:

Here I am in the middle of my 3^rd week-I have not yet adjusted to my new routine of life. I wake up in the morning and struggle to see my breakfast cereal in my room as the first of the morning light hits my eyes, even though I wear dark sunglasses. For the rest of the morning I go through medicines, bathroom calls and PT&OT before lunch around noon. It’s the afternoon that starts to get me. More medicine and bathroom calls and most of the time boredom while I wait for visitors to come. Some days I’ll have lots of unexpected visitors and it makes the time go by very quickly. There are other days with no visitors and the time goes by very slow. I feel like a Jack-in-the-Box and someone is winding it from the outside and I will pop out! There have been many times I’ve been overwhelmed and had break downs, but last I had a Jack-in-the-Box moment where I said I didn’t think it was fair that I was stuck inside when it was a nice evening. I think it was boredom again and my Nook battery died and we didn’t think the DVD charger was here either. A lot of my frustration comes from nothing to do, due to the lack of vision and light settings. I was already done scribbling with permanent markers and I wasn’t ready for bed yet. It was after my “outbursts” one of the nurses took me for a stroll outside. It was a wonderful evening. I was very humbled by the nurse’s care in helping me find something to do.

Even through all my frustrations, there has been some good. I’m getting to know the nurses and aides and I’ve had some fun conversations with them. Physical/Occupational therapy keeps me going as they’re trying to rebuild my strength. Yesterday I hit a milestone and “walked” down the hallway, but I would classify it more as “hobbled” using my walker. Still, it was exciting and left me out of breath. I’m very thankful that I have family close by and visits when they can and my mom visits everyday. I’ve also had lots and friends frequently visit, but what I struggle with is feeling like I’m losing contact with my family and friends that are out of state. I miss the days of old—emails, Facebook, texting—or just writing snail mail letters just to let them know I am thinking of them. Because I can no longer read my Bible, this is where my prayer journal has become like a favorite “book”. I use it so much I now have to sit out at the main lobby at the table because the binding is falling apart. My vision continues to fail and seeing people in my room is difficult. I want to protect these pictures of my family and friends because they are special…I pray for them.

Today, Dad met me as I was coming from PT and on my way to lunch. I was talking to him about my boredom problem and he started talking about using the time sitting as a time to pray, “Dad-that’s literally all I do around here!” I didn’t mean for it to sound like a bad thing, after all we’re to pray without ceasing. I have always been a “go” person and to all of a sudden stop is difficult and where most of my frustration lies. As we (Dad and I) continued to talk Dad said, “It is a lesson I am to learn, to rest in God and trust Him”. Trust is something that everyone writes about on the marker board after one of my emotional breakdowns. I am trying to fully trust that I will get past this sense of boredom and once again see that my life has purpose. Like the times at home, God has brought different songs and verses to mind. But this morning at breakfast alone in my room, I said, “I don’t want to eat Rice Krispies, I want to eat the word of God!” I think that is one thing that in my times of sitting, besides praying, I could use a lot more of this. I am trusting before I go fully blind; I will have the chance to do so. Thank you for your continued prayers for me and my family. Your letters, emails and visits all mean so much. I have more to share, but for now that is all. Love, Mel