First Stop of the New Year: Prayer - Part One

I'm tired. No, I'm weary. I'm exhausted. I am utterly and completely, deep in my bones tired. With both of the kids sick, and myself as well, the last two months have been very trying. Lately though, with the onslaught of sickness I have lost my way. Instead of exercising every day, writing a lot every day, editing, spending time in prayer, I have been just . . . wandering through my days and cramming all of those things in at the end of the day when I can barely keep my eyes open. This is another one of those days so this post will be in two part, second part tomorrow.

How is your prayer life? How do you pray? Since I was a little girl hiding, nursing bruises and a broken spirit among the flowers in our garden, I've talked with God like a friend, my best friend. Sometimes I ramble. I have a feeling sometimes I get on His last nerve because I'll get started and just go on and on, one thing leading to another. But when I was a little girl sitting in the flower bed feeling the velvety petals and knowing that God was in the flowers, I would just talk to Him. I had no friends, no one else I could talk to, so God got to hear it all. I have gone through periods in my life where I haven't really prayed, not daily prayer, just occasional things like "Oh my God, Bee isn't breathing please don't let her die." Things like that. But then there have been periods when I've prayed a lot. In the last couple of years I pray daily, rambling. I usually fall asleep talking with God. I bet He is usually pretty thrilled when I drift off, too, cause I can go on and on. 

Tonight, I watched War Room. Now, normally I'm not into Christian movies. They are usually very poorly done, the writing is bad, the acting worse. I had high hopes for God's Not Dead but was terribly disappointed. I will say that The Encounter with Bruce Marchiano was really very good. He plays a very convincing Jesus. Me, Again was cute and Christmas Angel . . . well, it was excellent and we love Della Reese ( especially Bee, she loves hearing her sing ) but the movie makes me feel lonely so I don't like to watch it so we skipped it this past Christmas season. Anyway, my point is that most Christian movie are not very good. I wasn't sure what to expect from War Room. What I got was excited, encouraged, and inspired. 

Every single night I pray the same things, the same way. Since I went a little crazy I'm a tiny bit OCD so there are some things that are just going to stay the same because my brain - even with my magic pills - is telling me bad things will happen if they don't. That's fine, God understands.  I have a very small life, I know, personally, exactly 32 people and I pray for each of them every night, plus some people that Noah knows and has mentioned. I even pray for my ex-husband and his now ex-wife because I'm hoping one day my prayers for them to be blessed will be sincere. But, in the end, my prayers are always the same: God bless this person, this person, and so on, occasionally adding a specific thing like heal them or help them with a particular issue, then I get to my kids, myself and then, well, I ramble. I ramble about things that bother me in the world, my worries, lots of what if's and existential blah blah blah (for the record and this has nothing to do with my recent crazy, I believe in aliens or the possibility and it doesn't challenge my faith in God or belief in the bible at all), then I read my daily devotion and the accompanying scripture, my usual comforting bible passages, look at the news quickly to see if anything jumps out that needs a little prayer and then I'm done. Same thing, for two years. And it's fine, I think, But it isn't enough. It's more like when my father would call his parents on Sunday afternoons to catch up and check in. Nothing exciting, nothing new but changes in the weather, same conversation every week. 

But this movie, it made me think.. Not that I haven't been thinking about it, my prayer life, but I've been kind of stymied. Without the chance to get to church, I'm kind of on my own in this. I'm in the middle of the sea with no land in sight, just swimming in whatever direction is easiest. 

Prayer shouldn't be like that, though. Prayer should be so much more than just the usual everyday stuff. I mean, sure, you can have that. That's great, gabbing with your bestie God. But it needs to be more. 

As a rather . . . reserved . . . person, I'm not going to jump around and scream "Hallelujah!" or anything like that. In fact, I consider my relationship with God to be the most intimate, private relationship I have. But there is certainly room for more passion, more enthusiasm, more time and commitment, more listening, more focus. 

My kids are both finally asleep so I'm going to head that way myself. But a thought to drift off on - how do I create a revolution in my prayer life?

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. 

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."

New Year, New Stops

Frankly, I'm too sick to post much. We'd just finished the third oral antibiotic, the second steroid pack and five days of antibiotic shots with my daughter and she was finally feeling better, sounding strong, and then my son and I got sick. We tried to keep away from her but as I have to change her diapers, give her meds, change her position, give her breathing treatments, get her in and out of her wheelchair . . . well. Obviously keeping my germs from her was impossible. She is very sick again and, when picking up prescriptions today, insurance decided once again not to cover them. Between over the counter things like cold meds, airborne, pedialyte and a variety of others plus prescriptions we've spent hundreds of dollars in just the last week and a half. Money we would not have had if God did not have such perfect timing. So today, on the first day of the new year, I'd just like to say thank you to God and to all of the people that He works through. In particular in our lives in just the last few weeks that list includes our priest and the members of the RCIA, Not just for their kindness at Christmas but for the love, support, encouragement and sense of family they have given Noah. Noah's mentor/sponsor/friend and his family which contains one of the two friends I have left since I went crazy. That family! They gave Noah a gift for Christmas that can never, ever be topped and just, in general, are such blessings in our lives. Also, an anonymous person at the pharmacy three weeks ago that covered some of our prescription costs when I told the clerk I didn't have the money to cover the medications, as I thought insurance would. The Beekman 1802 Boys for being so kind and showing Bee's painting on their 24 hour youtube marathon just before Christmas. They praised her work and made her very happy! The man that cut my hair. Normally I don't get haircuts, I just hack at it when it gets too long and that is that. But a major mishap with the scissors required a professional. And as we've seen him before and always refer people to him, he did it for free, he said it was his pleasure as he'd had a good month and was just passing it along. The neighbor that found me outside crying one night, thinking of just being done with everything and she made me laugh then she bought me a card a few days later that made me laugh even more. There are others, the kind man at the electric company trying to work with me as I try to catch up on bills. The woman that always has a smile in her voice when I call to order Bee's usual medical supplies. God in so many people.
I need to go rest, I'm so tired. The coughing is just awful and taking care of the kids while being just as sick as they are is exhausting. If anyone wanted to get a doctor to make a house call, my preference is the Tenth Doctor. He may not be able to heal us but he's sure pretty to look at and that'd be enough.
So, for God, with ever so much gratitude:

Psalm 100

Shout for joy to the Lord, all the Earth.

Worship the Lord with gladness;

come before Him with joyful songs.

Know that the Lord is God.

It is He who made us, and we are His;

we are His people, the sheep of His pasture.

Enter His gates with thanksgiving

and His courts with praise;

give thanks to Him and praise His name.

For the Lord is good and His love endures forever;

His faithfulness continues through all generations.