Dictated to Mom October 20th, Typed and posted by Dad October 23, 2015.
Sometimes I feel like I’m living here in the twilight zone. I really have no idea what this place looks like, except for a couple of memories. Because I spent a lot of time in my room when I first moved in, I could tell out the layout of the room. I have places where I like to sit. I know if I go out of my room and take a left there is a family lounge area at the end of the hall. I know if I take a right out of my room that takes me to the lobby area. I use to sit at the table in the lobby with my prayer journal or would look out the big windows . . . past that, I can’t tell you the layout of this place, especially the outside. I started learning the layout piece by piece with people who would take me on outings. They would let me touch the holly bushes or tell me when the sidewalk ended and we would turn around. I was also told there were cows in the field behind my room! There is a fountain outside in front of the building. “A fountain!” I exclaimed excitedly. At that point, the image of the sound of music with Maria and the Von Trapp family singing around the large fountain came to mind. “It is really not that big,” Marcia corrected. “Oh!” I exclaimed, but it was too late as the movie scene had come to mind. As I continued on my thought of the Sound of Music, Rolfe tells Liesl his concern for her because she doesn’t understand the outside world. He says he will take care of her because she is alike a “big baby”. She says she is sixteen, and what’s so “baby” about that?! Of course, the next musical score starts on its way, “I’m eleven years Liesl’s elder and sometimes I want to say my age and say what’s so “baby” about that? But the truth is over the past two and a half weeks; I have started to decline and entered into what I call “baby days”.
About two weekends ago, I had the privilege of finally meeting my friend Jess from England! She also has NF2. I was apart of the book she published of people around the world who have NF2 and their stories with the disease. I first met her on line in 2012 and we chatted back and forth. We both have one thing in common. We both really like Anne of Green Gables. We had kept in contact and had tried to meet before, but it had never worked out. I finally did have a little contact with her at the beginning of the year, so when Dad said “Guess who is coming?” she is not the first person I would have guessed was coming. Jess and I had a great weekend! It truly was one of those times that I really cherish! She had gone to Prince Edward Island before visiting me. She described in writing on my arm all that she saw. I envisioned it in my head. That weekend seems like the “top of the mountain” with Jess and family also visiting me. I was never really alone.
Things suddenly changed, as at the end of that next week I seemed to have fallen off the mountain top cliff into the deepest of dark valleys. Literally, almost all my family and extended family went to my cousin’s wedding in Chattanooga, Tennessee. And guess who didn’t go! I was already a crying mess and throwing my hands up in the air as the aides were getting me dressed on Friday morning. I didn’t feel physically well. I also didn’t see any purpose for me for the weekend. I really did struggle too because my eyes went from seeing lightness to being pitch black in an instant. “It’s the black spinning that makes me feel really sick. I was very grateful that a few friends stopped by as chats helped take my mind off of myself. I still had hours by myself—even my sleep was restless. I tried to sing songs and think of people to pray for, but I couldn’t get past my own physical suffering.
I was really troubled and despaired and I heard a voice in my head telling me that I should just “curse God and die”. As I shouted back, “No! I will not!” I asked God how much more I could give that hasn’t already been “taken” from me. Then a list of “somewhats” came to mind:
- I can “somewhat” chew and swallow my food.
- I can “somewhat” swallow my pills.
- I can “somewhat” take a drink without choking.
- I can “somewhat” move during the transfers.
- I am “somewhat” not confined to a bed yet.
- I can “somewhat” hold a toothbrush.
- I can “somewhat” feel things with my hands.
I started doing better when the family returned from the wedding . . . hearing all of the stories and getting the details of the weekend helped bring some laughs and joy back. I still was struggling inwardly as a lot of my dreams are pointing toward Heaven. My friend came on Friday with peanut butter and jelly sandwiches. It was delicious. As I sat talking with my mouth full, the subject changed to how I was doing. I gave her the typical run down and finished my bite of food. Then I started crying and asked my friend if it was selfish of me to pray for my heavenly healing? I’m still not sure about this question. I know one day I will have a heavenly healing, but is it right for me to plead to God to take me when He still needs me here to help others. Jesus gave everything I continued to say and He trusted Himself to God even though He knows what was ahead. I don’t know what is ahead, but I have truly given Him everything. It may not mean giving Him everything physically, but have I given Him everything in my heart? As my body continues to do down like “a baby’—trust is the one word I’m told all the time. If I have to trust everyone around me for my needs, then I should trust God and His timing.
Since my conversation with my friend, I’ve done a lot more thinking and praying. The songs I sing point toward Heaven, but I do see I have things I need to finish here. I pray that when my final breath has been taken, I will have finished all that God intended me to do.
Isaiah 40: 28-31
Do you not know?
Have you not heard?
The Lord is the everlasting God,
The Creator of the ends of the earth.
He will not grow tired or weary,
And his understanding no one can fathom.
He gives strength to the weary
And increases the power of the weak.
Even youths grow tired and weary,
And young men stumble and fall;
But those who hope in the Lord
Will renew their strength.
They will soar on wings like eagles;
They will run and not grow weary,
They will walk and not be faint.