Showing posts with label healing. Show all posts
Showing posts with label healing. Show all posts

Wednesday, January 6, 2016

Epiphany . . . and Bee's Birthday

We made it to 21!!! I still can't believe it. Praise God. She's still pretty darn sick but I fully believe in a miracle. I don't think we have another whole year with her, but I think Bee will be with us for a few more months, thank God. We didn't do cake or wishes today, but we'll get to them tomorrow.
It has been a long, hard road. I never, ever expected this life. When the doctors told me that first night at the hospital, after she'd started having seizures at a few weeks old, that she would be "mentally retarded" I thought "Oh, I can handle that." I was seeing what you always think of when you hear those words, high functioning, living happy lives, maybe even on her own one day. I could deal with that. It wasn't until the neurologist told me just what she had (Lissencephaly) and told me to "go home, put her in an institution, and have normal children to love" (btw, I immediately found a new neuro), that I have any small idea of what was ahead. Still, I never realized, not really because how can you? Not until you are in the thick of it. At first it was hard to see the difference, aside from the seizures she was just like any other baby. But soon enough the differences became obvious. No sitting up, no talking, no . . . lots of things. I put away so many dreams, it hurt so much. But there were so many little joys, too. When my husband chose a different life and walked away, saying she should be "put away", our lives changed a lot. He lives a very nice life and we live below the poverty line. Is it worth it? Some days I waver but the truth is YES! My Bee is worth every back pain, every lost dream, every hungry day, every mile I have to walk, every sleepless night. She is a gift, as is my son. We are both so much the better for having her in our lives. With Christmas having just come and gone and us spending hundreds of dollars in the last few weeks on medications, OTC's, she just got one present and it was really meant to help clear her lungs - a massage mat. I'm hoping it helps. And that her diaper doesn't leak on it. But one thing at a time!
A lot of people helped us to get to this point. Her longtime pediatrician, her newest doctor, old friends, new friends, her brother and, of course, God. And we must give Bee some credit, she's strong and amazing. I've a link on the sidebar for her website if you want to check out her paintings and things. 
So before I go to bed for a couple of hours of sleep before the next breathing treatment, I wanted to just say thank you to everyone, and to God. My girl (and she LOVES that song - she also loves Taylor Swift and Della Reese) is 21!!!! 

Psalm 145
1-3: I will exalt you, my God the King; I will praise your name for ever and ever. Every day I will praise you and extol your name for ever and ever. Great is the Lord and most worty of praise; his greatness no one can fathom.

8-9: The Lord is gracious and compassionate, slow to anger and rich in love. The Lord is good to all; he has compassion on all he has made. 

Monday, January 4, 2016

Prayers, please.

I'm not sure anyone reads this blog, but if you happen across it, please do me one huge kindness: pray for my daughter. She's been sick for a few months. We've been through a number of antibiotics, steroid packs, antibiotic shots and she was getting better. Then, we all caught a cold. She was fine for a few days, still a little rumble in her chest but getting better, Then she caught what my son and I had and now she is extremely ill. Another round of oral antibiotics, steroid pack, lots of fluids, airborne, breathing treatments, CPT's, nothing is helping. I'm more scared than I have ever been. I have always known that she would die, they told me that the day she was diagnosed. But with each year that passed I just worried about it less. Oh, don't get me wrong, first thing I do when waking is check her to make sure she is breathing - and I sleep on an air mattress next to her bed just to be there if she needs me at night. She gets sick, I always worry. But she's never been this sick, for this long. I can't seem to get her lungs clear. I could send her to the hospital but the last time was such a nightmare I don't want her to go through that again.
Things have been so hard for us, but I've just always hoped and prayed that she would hang on until we got back on our feet, got a vehicle, a decent place to live. She went through the bad, I wanted her to enjoy some good. We haven't been able to go anywhere together as a family for several years without a car. I'd like to take her to the aquarium again, and Silver Springs, and a million other places, for us to go as a family again, the three of us. I just need her to hang on a little while longer,
So if you read this, please, go light a candle and say a prayer for my Bee. Pray for healing, pray for her to be strong, to keep fighting. Please.

Mark 5:36 Ignoring what they said, Jesus told the synagogue ruler, "Don't be afraid; just believe."


Friday, September 18, 2015

Second Stop: Loneliness. Population: Me . . . and Jesus

     Growing up in a houseful of brothers all several years older than myself, I spent a lot of time alone at home. Picked on at school, I spent most of my time alone there as well. Lonely became comfortable, safe. Each time I tried to reach out I would end up with another broken piece of my heart in my outstretched hands. I was always hopeful though. I dreamed of a warm, loving family. Close girlfriends and sleepovers. We had several board games at home and I usually played them by myself, hoping someone in my family would come along and take pity on me. I was desperate enough to be willing to accept a pity game but they never joined so I played alone. I grew up and married a man much older than myself who traveled for work. He'd fly all over the country, was gone for months at a time. Our daughter was born with severe disabilities and the few friends I had at the time were so uncomfortable they stopped coming over. Once again, I was alone most of the time. I actually looked forward to the many hospital stays. There was a sense of community within the pediatric ward at the hospital. Eventually my son was born and I wasn't so alone anymore. As he grew we spent a lot of time reading together, playing board games. I cannot tell you how much I enjoyed buying his first board game! Within a few years we had a walk-in closet dedicated to board games. Now that he is a teenager though, he spends most of his time in his room with the door closed. Board games, crafts and reading with Mom are just not as appealing as they once were. Home bound in a town where we know very few people, I am alone again. Over time, though, lonely stopped being a comfortable place. Lonely stopped being quiet and safe. It roars in my ears, pulling the walls in until I am suffocating. My anxiety has grown until it is a monster that shadows me, giving me no peace. I tried to talk to a few of my friends about this growing anxiety and depression. I got a lot of suggestions like "Start your day with positive thoughts" and "Happiness is a choice". I know they didn't mean to do so but their advice only made me feel more alone. In fact, I have never felt more alone in my life and I think that is saying something.
     I turned to my bible but it didn't really help. Not until I ran across a daily devotion that detailed some of the emotions that Jesus experienced in the last weeks of his life. One of those emotions was loneliness. I was shocked. It had never occurred to me that Jesus would have been lonely. He was always surrounded by people that loved him! How on Earth could he have been lonely? I read the bible passages that accompanied the devotion and realized that if this was true then Jesus understood what I was going through - because He, too, had experienced loneliness! And not just loneliness, sadly, but fear and loss as well. I began to look at passages in the bible differently. Suddenly I could see a pattern that had escaped me all of my life. I grabbed a blank index card and wrote in bold letters: Jesus Understands. On the back I listed several stories in the bible that illustrated this fact. And as I read my bible each day, I am on the lookout for more. You see, I had always had this vague idea that Jesus had a pretty simple life. He knew who He was, He completely understood and embraced His purpose. Things like fear, loneliness, grief, anger . . . they didn't mesh with the experience I imagined Jesus had as a man. I thought the knowledge that he was the son of God was somehow  . . . insulation against the deeper, negative emotions. But the truth is He came to Earth as a man to fully and completely experience life as a human. Love, anger, loneliness, grief, need, hunger, fear - all part of the human experience. The next day the devotion was about the names of Jesus and how they described the different aspects of his life: Prince of Peace, Almighty, Bread of Life, Great Shepherd, Counselor, Deliverer . . . the list was extensive and each one added another piece to the puzzle of Jesus that I was slowly putting together. Then I saw the name Man of Sorrows:

He was despised and rejected by men; a man of sorrows and acquainted with grief; and as one from whom men hide their faces he was despised, and we esteemed him not. Isaiah 53:3

     I cried when I read that. I hated the idea that Jesus suffered that much. On the heels of that terrible realization I finally understood that He is called Counselor because He has lived through the same pain, He understands, and can counsel us accordingly. There is comfort in that, as God intended, I'm sure. When the anxiety takes over, I try to hang on to that one truth. When the loneliness threatens to consume me, I cling to that one, comforting truth:

Jesus Understands

     Perhaps you will find comfort in that truth as well. When you are overwhelmed by loneliness, when you are stumbling around in your own personal darkness and feel like even your friends have abandoned you, remember that Jesus felt the same way in the Garden of Gethsemane (Matthew  26:36-46). If you are drowning in grief consider that Jesus wept over the death of His friend Lazarus (John 11: 33-36) and showed His understanding of the grief of others when He raised the widows son from the dead, so moved was He by her tears (Luke 7: 11-17).  Jesus understood fear as well. How else can you explain His reaction when the people came to Jairus, with whom He was walking, and told him that his daughter was dead. Jesus immediately told Jairus "Don't be afraid; just believe." (Mark 5:36) Jesus knew the news created an instant reaction of fear and dread within Jairus. I imagine He took him by the shoulders and looked deeply into his eyes as He told him those beautiful words, words I often repeat to myself: Don't be afraid, just believe. 
     Life is a journey over rough terrain. The twists and turns and bumps can leave us bruised and broken. Thank God (literally) that there is a Counselor we can turn to who knows exactly what we are feeling because He was bruised and broken, too.