LOVE; EXTRAVAGANT.... OR COSTLY?

"Love extravagantly, even when it's costly and it's not returned."

You know that place when you're sliding into waking up but not quite there yet? I often hear a jewel of wisdom from God, and have to focus really hard to grab it and hold onto it before I get out of bed or even move. And when it's hard to grasp the fullness of the words, I wait and ask God to please give it to me again. It can take a while until I feel I've really gotten  hold of what He was saying. Today was one of those times. 

I'm pondering the Lord's choice of words, extravagantly and costly. Aren't they the same? But I realize that they're not. I can love extravagantly without it being costly, because the one I'm loving is one I also have relationship with, adore, cherish or otherwise greatly value. Like Jesus. Or my husband. Or my children or grandchildren. Loving extravagantly is costly when it's someone who doesn't like me, or hurts me, or is someone who rejects my attempts at loving them. This is the love Father was talking about to my heart this morning. I've been finding that quite often lately, the Lord is asking me to question myself in how I'm doing with loving those who I feel have rejected me, or who have I feel have abandoned me in some way, or those who judge me. Or "GASP" the ones where the little green monster of jealousy raises it's ugly head. In me, not in them. In all of these scenarios, He's asking me to love in spite of the fact that it's costly, and to adjust my heart to line up with His. A There's no condemnation at all, just a questioning inside about whether I can choose a better way. His way is always better than mine.


Bless you today as you read this, as you go out and come in again, as you sleep and dream and hope and love. God stopped by this morning, and started my day off with a deposit in my love account. I'm so glad He did. I hope He does the same for you.



originally posted 8-12-13

MISSING MOM

Tonight, I'm missing my mom. You know, as you get older, you don't need your mom in the same way that you did when you were a little kid. She wiped your nose, and washed your face and taught you how to do that for yourself. She sent you to school and listened to your stories when you came home again. She did many things for you and taught you how to do many things for yourself, and then she let go and let you do them. She was always there, but also not always there. You know what I mean? She stepped back to let you learn and discover and become an individual. One day, you realized how much your relationship had changed; you still needed her, but not in the same way.

When I was in my thirties, my mother retired from her career as a nurse. My kids were teenagers, and growing more independent, and I was looking forward to being able to spend more time with her. The mother-daughter relationship had changed so much, and I felt as though we were becoming friends as well. Unfortunately, due to the economy and the cost of living, my parents sold their home and moved to North Carolina. It was a wonderful change for them, and they were happy in their new settings. It wasn't so great for me. I missed them. It was a 12 hour trip to visit them, and we would go now and then, but after my grandson Adam was born and had so many hospitalizations and sickness, and so many complicating issues, it became very difficult to visit them. We saw them only once a year, and sometimes less than that. It was hard for us and for them, and I know they didn't completely understand why. No one can, unless they live a life similar to ours. It's too complicated to explain, but Adam cannot visit people in their homes; it makes him extremely anxious, and everyone is uncomfortable. His anxiety went undiagnosed for many years, and we couldn't explain the crying and inability to rest or sleep. So we just didn't go very often. And after Mom got sick (emphysema), it was even harder to visit. It was just too stressful for her. How unfair it seems that her life was cut short. The women in our family often live to be an advanced age; 89, 90, 92 years. Mom only lived to be 78. I always feel like she was cheated out of so much, and we were too. Dad followed her to heaven just two and a half years later.

They didn't get to meet all of their wonderful great grandchildren, and the kids didn't get to know them either. There's another one coming in February. It will make 7 grandchildren for us, and, I think, 22 great grandchildren for my parents..it's hard for me to keep track of them all.

So tonight, I'm missing Mom, and wishing she were still with us. She would be 85 now; Dad would be 88. It seems so strange to not have parents anymore, and to now be the older generation of our family. When Adam was born, there were five generations in my direct family line. Now there are only three. (My aunt, my mother's sister is still living in N.C.; there are four generations there.)

The ramblings of a late night. But I like to end with the truth that God is always present, that He's with me in all this, and that He stops by and reminds me that while I'm lonely tonight, I'm not alone. Peace and love to my readers. Thanks for stopping by.

SPICKA-ME AND FLUTTERFLIES

I love watching and listening to little ones as they're learning to speak. They hear it right, but sometimes, something gets lost in the translation. Sometimes, I like their words better than the real ones. Sometimes, their words are funnier and also unrepeatable!

I remember when my youngest daughter was learning to speak in sentences, and came running to tell me, 'Mommy! Mommy! I just saw a f--k!" "WHAT!"  "I just saw a f--k!"  I spent a considerable amount of time coaching her on the word "truck". She hadn't been able to say the blended consonants, but by the end of the game I made up and the afternoon, she had it down pat.
I bet every family has similar stories to tell, some of which take place in the most awkward moments, like the middle of a crowded store, or a party, or maybe at church.
But there are some that are endearing, and one from last year that I hated to see change. Maggie was two and a half last summer, and speaking well for her age, with the usual confusing of words and switching around of syllables.

One afternoon when she was here at our house, and it was time for watching t.v., I asked her what she wanted to watch and she said, "I watch spicka-me." I had no idea what she was talking about. "What do you want, Maggie?" I wan spicka-me." " I'm sorry, I don't know what that is. Can we try something else?" "Yes you do,", she insisted. We went around a few more times, with Maggie insisting that I knew what it was and that I had it . "Can we please watch something else, Maggie?". Well, that was not a choice, but since I didn't know what she wanted, she settled for Spy Kids...."the robot one".  When her mom came to pick her up, I asked her for the interpretation. She broke out laughing and said, "She wants to watch Despicable Me." I almost lost it over that....she was perfectly clear....however, we did NOT have that one. This year, she asks quite clearly for whatever she wants, and that makes things easier, but not as funny.

Last year, when we were outside enjoying the sun, the pool, and the flowers and bugs, she loved watching the "flutterflies". Even I knew what she meant. We have lots of different ones to see and she delights in all of them. She would sit in the window seat in our den and look out back to see if she could see them when we were in the house. "Look Grammie! There's a flutterfly. And there's another one". I loved her word for them; it somehow seemed more fitting than butterfly. And more descriptive to what they are, don't you agree?
Alas, when she spotted the first one this year, the baby language was gone, and they are now butterflies. She still takes delight in seeing them, but I am saddened at the loss of the other oh so wonderful word.

Every mother of grown children will advise every mother of a newborn to enjoy it while it lasts; childhood is so fleeting. And it truly is. I often wish I had written down the things that my children said and did, and the things that my older grandchildren have said and done. It is so fleeting, and so is my memory. But most of the time, I was too busy raising them to think of that. The truth is, I still am most of the time.

Flutterfly. A great word. I think I'll always remember this one. Even if it's gone from everyday speech, it's in my heart.


 

Sometimes, When It Rains, It POURS!

The other morning, I was rudely awakened by the sound of an extremely loud crack of lightening, followed immediately by booming thunder. I jumped up so fast I nearly fell out of bed.It was pouring down rain, so hard that it was difficult to see across to the other side of our street. My thoughts immediately went to the Oklahomans and what it must have been like for them as they rode out the 40 minute massive tornado that caused so much destruction and heartache. I began praying peace into the storm; Jesus did this, and he said we would do even greater things than he did...so I take him at his word regarding storms. It did quiet down and I went back to sleep for a while longer.
The last six months have been storm season at our house. It was a long, cold winter, and it was also full of sickness. It all started on November 5th..........

Just a typical day, kids, busyness, family over for dinner together. Adam had been pacing and then went into his room and we heard a THUMP. As we went running for his room, he started yelling; he fell down, was hurt and he was sitting in the middle of his floor. That isn't unusual, he usually can't get up when he falls. I checked him over and couldn't see anything bruised or bleeding, and so I tried to help him rise, but he was now crying from the pain and refused to bear any weight on his left foot. Adam never cries. I lifted him, encouraging him to put his right leg down, and was able to get him onto his bed. Now his knee was beginning to swell, but no bruising. I got him into his wheelchair and applied cool compresses as much as he would allow, and gave him some acetaminophen. He continued to be uncomfortable, and would not stand. I took off his shoes and braces and let him rest. He slept o.k. that night. It was Friday and I waited to take him to his orthopedic on Monday. (No way we were going to the E.R. Not worth it unless Adam is in a dangerous state of shunt malfunction or a much worse level of accident. Too much to go into here.) X-rays showed no fracture, and it was determined to be a bone contusion. He'd get better. We went to the orthotist for a splint. That turned out to be much worse than  rest alone, so after multiple tries and adjustments on our part over the next few days, we abandoned the splint for rest alone.

To make a long story much shorter, Adam did not improve. We took him to his physiatrist (that's a doctor who specializes in rehab) for an eval for physical therapy after a repeat visit to his orthopedic who retook x-rays and said it's still the same and doesn't show any sign of fracture; go for physical therapy to strengthen the quads and better support the knee joint. The physiatrist had her orthopedic take a look at him and he said he thought he tore some ligaments. But he doesn't know Adam and actually, we left his practice many years ago as he was negligent in Adam's care. But the physiatrist said "No P.T. Let him rest and go back to the orthodoc in a few weeks."

 Two months later,  Adam still was not better. We returned to the orthodoc and still nothing in the x-rays, but he suspected a stress fracture and ordered an MRI, which the insurance company approved. Diagnosis: stress fracture and bone contusion:left tibia. no sign of healing. Physical therapy prescribed and also calcitonin nasal spray which is supposed to help the body drive calcium to the bones for healing.

In between all this, in January, Adam had a G.I. bleed. This required a visit to the gastroenterologist and an endoscopy. Diagnosis: ulcer. Not his first bleed, but first time where an ulcer was actually seen. sigh.


Doesn't seem like I even shortened this does it?


Over this winter, he also had the flu, three colds and a stomach virus.

On April 21st, Adam had a violent headache. I sat with him for a long time at bedtime, and he went to sleep and slept fitfully that night, He woke up coughing and calling for help; I ran to his room expecting a G.I. bleed, because that's what happens when he has one, but he vomited normally and then laid back down and said,"I feel so sick." and turned his face to the wall. He was white as a sheet. He also wet himself and began twitching; a probable seizure. I took care of him, called all family members who were needed for differing reasons, and took him to the E.R. Suspected shunt malfunction. He had c.t.scans, x-rays, blood work and blood cultures, urinalysis and and EEG. The only thing that showed up was a urinary tract infection. All scans were approximately the same as his last series had been. Adam was hospitalized for the UTI and we spent a total of three days in Stonybrook University Medial Center, with tests, i.v. meds and fluids and then oral antibiotics for ten days. Adam's neurosurgeon still was suspecting a shunt malfunction, but because of the UTI, he couldn't operate; too much risk of infection spreading. Home again, home again, jiggety jog.


Wow, what a long season, you say? It wasn't done pouring over here. Our service coordinator suddenly up and quit her job. In the interim to assigning us a new one, the agency sent a temporary agent. He took all this information and the next thing I knew I got paperwork that appeared to be accusing me of abusing Adam. I called the head of services and got the answering machine. I left a message saying that if I didn't hear from her first thing in the morning, they would be hearing from my lawyer. She called at 8:30 the following morning and wanted me to please explain to her and read to her what was so upsetting about the paperwork. I did, and she was all apologies. I wasn't being accused at all, and consequently, the form has been permanently changed. No other parent will get that scary letter, unless they're truly being investigated.

I was messing around with one of the big boys at church in early May. I went to grab the back of his shirt, and he zigged when I zagged; I broke the ring finger on my right hand, just above the first knuckle.  It looked like a blue and purple sausage for two weeks. It's still healing. ( Adam's orthodoc  x -rayed it for me when he went for a recheck of his leg. Five months later and the x-ray still did not show new bone in the tibia, but he's walking so he made progress. Go back for more p.t.)


I went to Pennsylvania for my niece's bridal shower in May. I drove for five hours, had a great time for a few hours, and drove home again. Too much going on to take a chance of staying over. Good thing I listened to the voice inside that always guides me; I drove four hours and got home at four a.m., and an hour and a half  later, Adam woke up and vomited blood all over himself and his bed. I contacted his gastroenterologist and was advised that everything I had done was right and we could stay home as long as he didn't have any episodes of bright red blood in the vomit. He didn't throw up again.

A new service coordinator was assigned for Adam. We really like her. She's helping us look for a day program for Adam. She wanted to hear the whole saga of the last few months. She was in awe. She's probably still shaking her head in disbelief.

Now it's June; the weather is getting so nice, there are lots of songbirds in the yard; we all enjoy hearing them. Adam's neurosurgeon feels the best thing for Adam is to leave him alone. Unless there's another episode, he doesn't need to see him for a year. Over his lifetime, Adam has had twenty shunt surgeries and an appendectomy. He doesn't do well with surgery and anesthesia anymore, and it is risky to send him to the o.r. ....but that's another story.

So I thank God we have weathered this stormy season, and that he was with us every step of the way. I know there is better ahead of us than what's gone behind us. Even in our dark times, God is always good. His love carries us through all of this; I couldn't ever make it without him.

 

11:11 Transitioning Again

What a gorgeous day it was today! It was unseasonably warm, and I sat on the deck on the south side of our house and soaked up the warmth of the sun. It's March ninth, and it's not usually warm enough to sit outside without a jacket at this time of year. What a gift of spring weather after so many storms and rain and snow. I took a crochet project outside with me; my grandaughter's birthday is close and I needed to finish it. She was here with me today, and as I worked on it, she didn't even ask who it was for. That's unusual, because it's her favorite color, and she always asks what I'm doing and who it's for when I've got a project going on. (hold on a minute; it's daylight savings time and I have to change the clocks before I forget. I'll be right back.)
Spring ahead, fall back.

Interesting. As I changed the clocks, the time became 11:11.( I love changing the clocks because I get to see the exact same time on all of them when I do this. I have three clocks to change in my kitchen; well, four actually. The oven, the microwave, the stereo/cd player and the wall clock. The wall clock is the only one that isn't digital.) hmmmmm.....prophetically speaking, 11 indicates a time of transition, and/or standing in the gap(intercession). How appropriate! I love when the Lord speaks to me through little things. I've been noticing numbers again lately, and I think it's because it's a time of change once again.

This morning I woke up early, at 6:00 a.m., and stayed up. I've been asking the Lord to wake me up early, as I've been sleeping in for some time. He has been waking me earlier the last few days, but I haven't gotten out of bed right away. Today, I woke up, prayed a few minutes, got up, prayed some more, asked Him to speak, and He gave me Psalm 63. This is a Psalm that the Lord has given to me many times over the last several years. I read and prayed it again this morning.
      "O God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water.
        I have seen you in the sanctuary and beheld your power and your glory.
        Because your love is better than life, my lips will glorify you. I will praise you as long as I live, and in your name I will lift up my hands.
        My soul will be satisfied as with the richest of foods; with singing lips my mouth will praise you.
   On my bed I remember you; I think of you through the watches of the night." vs. 1-6   (and following) How good is our God! He speaks to us in our exact circumstances.

So I began my day with Him, amd I'll end it the same way. In between, I spent time with my family, and I'm thankful that I can do that; so many others can't or don't.

11:11. Transition. Perfect. I started this blog going in one direction, and by following the prompting of the Lord, I ended up in a completely different one. What a great day I've had. I hope this blesses you, or at least gets you thinking. God really is in the big things of our lives, but He's so very present in the small things too.

     

 

BLAH BLAH BLAHGGING

I was telling Adam that this is my blog page. He said "Your blog? blah blah blah. " I said, "You're right Adam, sometimes that's exactly what it is....a lot of blahblah blahgging."  We were laughing. Sometimes I feel like it's just that; blah blah blahgging. I do try to write about things that are relevant, at least to us. I haven't been posting lately because I haven't been concentrating on writing.
Today's going to be busy for us. Adam has physical therapy, we need to do some banking, a friend is coming over this afternoon, and another friend is coming to measure for some new bookcases to join the ones he made for us last year.
Instead of blah blah blahgging, I'll be back later. Or tomorrow. Have a great day and be thankful for something. We can always find something to be grateful for, even if it's just being alive today. I'm thankful for all of you. Bless my friends today, Lord. Fill them with love and joy, and let them know you in a deeper way. Amen.

My Angel

This morning a friend wrote on her facebook page that her cousin went home to heaven. Her words, not mine. She wrote about how much she loved this cousin, and how Donna had touched her life so deeply. She shared how Donna was always so excited to see her, and hug her and just pour out love to her. My friend recently moved far away from her family, and was very sad at not being able to spend time with her cousin at the end of her life. "My angel", she called her. Donna had special needs; I don't know what they were, but my friend wrote about this in a beautiful tribute to her.
 Another friend of mine, who I wrote about a few months ago, also had special friends. She also called them her angels. "My angel", she said about the first young man that impacted her life.  (please see  MARIA'S ANGELS 9-23-12)
I was thinking about this today. Two women who completely love special needs people. They love them without reserve. They both treat Adam the same way, as someone who is lovable and wonderful. And they call him "my angel". Both are good friends to us, and I appreciate them.
I see the heart of God in them. I wish everyone felt and acted the same as these two women do.
Unfortunately, this isn't so.
 I was reading on a page yesterday about a young man with Down syndrome who died tragically at the hands of some overly zealous police officers when he refused to leave a movie theater when the film ended. He wanted to watch it again. I don't know how much of the story is true, but it is terribly sad. The thing that's just as sad is reading the comments on the post. The ignorance of some of the writers there is beyond belief, especially a few from those who claim to work with the special needs population. Excusing the behavior of the young man because of his disabilty as some of them did is wrong, but so is the expectation that he could behave exactly the same as typically developed adults behave. Needed intervention did not happen, and he died. The remarks that I found the most offensive came from a self described caregiver...she called those in her care her "tards". She claims that she loves her "tards" and wouldn't have let that happen to any of them. Really? She loves them? Then where is the respect for those she claims to love? Using the word "tards" as a term of endearment is disgraceful and disrespectful. What a contrast to my friends who call them angels!

The word "retard" is a pet peeve of mine. It makes my skin crawl when I hear someone say that. When I mention it, people say that isn't what they meant, that they're not making comparisons to people with developmental disabilities. And I always say "Really? That's not what you meant? Then what did you mean?" There really isn't a satisfactory answer to my question, because that's exactly what's being said. The word retard comes from "mentally retarded", an old classification that is slowly passing from usage. "Devopmentally disabled" is one of the newer and less offensive terms. I think the classification had to be changed specifically because "retard" has become such a derogatory way of speaking, and is of course, intended as an insult.
One of the hardest things for the family of someone with disabilities is to trust that there will be someone to love and take care of their special person when the family can no longer attend to their needs, especially when that person can't communicate and tell what happens to them or around them. To trust that they won't be hurt or mistreated by their "caregivers". When I read posts like I read yesterday, it makes me more determined than ever to keep Adam home with us and never let him live in a group home.That young man's family trusted his caregiver to protect him, and he died. Even though I know there are some who love, and love well, my fear is that there are far more who just work with in this field because they couldn't find anything else, or because they see them as easy prey.
I hope that as time goes by and people learn that those with disablilities are just like everyone else, with feelings and the ability to love and bless others, that things will change. I hope there will be a screening process that keeps predators and cruel and ignorant people out of the field as care providers. And I hope that more people who see them as angels will be drawn to work with and care for our wonderful family members. My heartfelt thanks go out today and always for those who love our children, and love well. God bless you. He put His love in your hearts and you pour it  out with no holding back. You are a treasure.

here is a link to the story of the young man who died . the above picture is not him; this is our Adam.

 ): http://www.washingtonpost.com/local/autopsy-finds-that-md-man-with-down-syndrome-died-of-asphyxia-while-in-police-custody/2013/02/15/4d752304-77ab-11e2-b102-948929030e64_story.html



 http://www.dropbox-movie.com/trailer.html this is a link to a movie trailer about a man who rescues unwanted, disabled babies! please watch.