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. 

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.

God's In Charge of the Time Table, Thankfully - Cause I'm Always Running Late

This is just a quick post of thanksgiving. Something that I have dreaded happened today and God just made things work out well. I took my magic pills but I hardly needed them, God was amazing. He has perfect timing. Weeks ago a friend of mine that usually visits on Sundays couldn't because her truck wouldn't start - turns out two days later she was at the ER because she was very sick and very contagious! I put off hanging my wreath all day one day and when I finally did I was in the right place at the right time to see my elderly neighbor needed help (we ended up calling an ambulance for her). God's got amazing timing! But this has to be short because the nurse is coming to give Bee a shot. Prayers please, that this course of treatment works. We want to get her to her 21st birthday in January (the 6th, Epiphany) and beyond!!!!

Psalm 95:2-3 Let us come before Him with thanksgiving and extol Him with music and song. For the Lord is the great God, the great King above all gods.

Not exactly a Norman Rockwell painting

Today, instead of blessings, I've been counting Xanax. I guess it is reassuring to know that I have enough . . . if I need enough. My daughter has pneumonia, my son isn't feeling well and I instead of turkey and all the trimmings I bought prescriptions for the kids and cold meds. I did make sure we had our usual chocolate pecan pie, though. It is my son's favorite part of Thanksgiving anyway. This is one of those days where time seems to meander, to stroll along at a Sunday drive pace and by mid afternoon it has become unbearable. I used to dream of big family gatherings. In the deepest parts of my heart all I ever hoped for was a husband that loved me, a big extended family to gather together on holidays. I guess I wanted a Norman Rockwell picture. It's funny, that is what my ex-husband got. He was an unkind husband at best, has been an absent and selfish father, but today he is gathered with his family having a big, wonderful, noisy family feast. I'm struggling so much not to be angry today with him, to ask God why it worked out this way? Why he gets a big, lovely house and we have an apartment that has so many issues? Why he has two personal vehicles and a work vehicle and we walk everywhere? Why he, who has spent his life focused only on himself, always has plenty while we usually do without?
I suppose I'm just tired today. My lupus is flaring, my anxiety is off the charts, my depression is digging in. I know that we have so many more blessings than many people. I know that, I truly do. But today I feel like I'm failing my son in so many ways and it hurts. Today everything hurts.
However, if anybody actually reads this, I hope that you are having a wonderful Thanksgiving. I pray that your day is filled with family and friends, lots of delicious food and that you are making wonderful memories.
As for me, I will hold on to this and hope to get through the day. If anyone out there is lonely, and sad, maybe this will help them as well:

John 16:33 I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.