Home Again Home Again Jiggetty Jog

Whenever it's time to go home from the hospital I always think of the nursery rhyme from which this line is derived. I don't know why, I just do. I've been using it to let people on facebook know that Adam is home from the hospital again as I don't usually make it public knowledge that he's in until we're out.

We came home Tuesday at five thirty. I had hoped to be home earlier, but we had to wait for a ct scan and he had to have his two o'clock dose of antibiotics before we could leave. That night, the nurses came to teach me how to give the meds through the PICC line. All the supplies I would need were delivered at six thirty and the nurses came at seven. One was the teacher, the other was new to the company and was here to learn paperwork and procedures. They were really nice and made the learning easy. We had tea together as we waited for the ten o'clock dose to be given, which I gave to Adam. They wanted to be sure I knew how to do it.

Today is the last day for these meds. Tomorrow the visiting infusion nurse will come and pull out the PICC line. We will do the Happy Dance! Adam wants to go driving, and if he feels well after the nurse leaves, out we will go.

You might think that after all that's happened, the rest of Adam's recovery should be a breeze,  but this is not so. Adam is particularly sensitive to the changing pressures inside his brain. Oftentimes after seasons of surgeries like this one, it takes many, many weeks for his brain and body to acclimate to the new system. He has frequent headaches and vomiting and sometimes this goes on and on until his brain finally accepts the new shunt system. I'm praying the time is short and he recovers quickly. It's hard watching him suffer. All I can do is give pain and anti nausea drugs, hold him, and pray.

Sometimes it's hard finding the balance between trusting God for healing and accepting what is going on.

 I don't know how anyone else does it, but I have learned to accept what is, and lean on God while we go through it. I don't really understand the "name it and claim it" kind of faith. It's never seemed to work for me, and when I tried that approach to our circumstances, all it did was leave me hypercritical of myself for not having enough faith for Adam to be healed. When I've heard  the Father speak into our difficulties, it was never that I didn't have enough faith, it was always that he's with me to bring me through to the other side of the "valley of the shadow of death". Shadow of death. Not the actual valley of death. We've been close a number of times, but Adam is still here and we're so very thankful.

I remember a particular season during the summer of 2004, what I call the year from hell, when Adam was much younger and had a season of surgeries much like this last one. I was hanging laundry and crying to the Lord, and weeping for the suffering of a little boy who could not understand any of it, or even talk about it. He had very little language then, much less than what he has now. All he could communicate was by screaming "MY HEAD, MY HEAD" and holding it with both hands. As I was talking to God and yelling to God and screaming a bit myself about why he gave me this child if it was only to take him away, and did I ask him for this child, he quietly spoke to me and gave me a scripture passage to look up. So I did. Here it is; 2 Kings 4:8-37. I won't put the whole story here, but it's the story of  the Shunemite woman and her son. The child is a gift to her from the Lord because of her many kindnesses to Elisha when he comes to her town. One day while the boy was in the fields with his father, he fell ill and cried out "My head, my head!". And lay down in his mother's lap and died. She put her son in the prophet's room, shut the door and said that no one was to enter there, and went to get Elisha. She would not speak to anyone but him, and when she did, she said " Did I ask you for a son?". She would not leave and go home until Elisha agreed to go with her. He prayed for the child and the boy was raised from death and was given back to his mother.

I was bowled over by the goodness of the Lord to show me in his word how he was with us in all that was happening, and I believed that Adam would survive. It didn't shorten the suffering, and he wasn't miraculously healed. What did happen was that my heart was healed. God stopped by while I was hanging laundry and spoke to me through his word and let me know that he's always here. Not just near, but here. I have learned to lean, as someone has said. When my strength fails, or even when I'm strong, I lean on the One who is stronger still. He will not fail to keep my head above the water and will rescue me from the fire.  And we are home again, home again, jiggetty jog. God is good, all the time.

Thanks for coming along on this journey with me. I enjoy your company so much. Blessings and peace to my readers today.

 

We're Almost There

It's 12:30 Sunday morning, March 16, 2014. We've been in the hospital for 12 days. Yesterday I finally heard from the infectious disease specialists about the length of treatment for Adam. It will be a total of 14 days from the start of the specific antibiotic needed to treat klebsiella pneumonae. 14 days! Amazing! We were originally told it would be 4-6 weeks. The last 3 samples of cerebral spinal fluid were clear of any sign of bacteria, and the white count has continued to drop. We have a move of God in my humble opinion. The neurosurgeon will make the call in the next few days regarding when Adam will be able to go home. It will depend on how Adam feels and whether everything is going smoothly with his new shunt system.

Thursday Adam had issues with his heart rate all day and overnight.(up to 161 beats per minute when up and walking) I asked for a cardiac consult as I was concerned that the extremely high rate would negatively impact him going for the final surgery, and the neurosurgery team agreed. I didn't want him to be at risk of not going to the operating room. I wasn't worried that there was anything wrong with his heart as he was seen by a cardiologist in October when he was admitted for shunt issues. He had been going between bradycardia (extremely slow rate) and tachycardia(extremely fast rate); it was determined that the problem was because his shunt had failed and his intra-cranial pressure was too high and was causing the fluctuations. Anyway, the cardiologist came in and ordered blood work, and later ordered more blood work, an echocardiogram, and a Doppler study of the veins and arteries in his legs to rule out a possible blot clot as the cause of the tachycardia. The lab work was done overnight and the other tests were done in the morning and Adam was cleared for surgery. The determination was that he was probably dehydrated.

Adam's surgery to internalize his shunt took place on Friday. Everything went very smoothly, and all the hardware needed to keep him safe and his brain free of excessive pressure was put back in. He was so tired from his ordeal of the previous three days that he slept in recovery for five hours! Every time the nurse or I woke him up, he refused to stay awake until about seven thirty p.m. That ran into shift change time, so we had to wait.. We got back to his room around nine o'clock that night.

Adam's PICC line is working well, he feels and looks better, and he will probably go home on Monday or Tuesday. I will need to give him antibiotics through the PICC line for just a few days. I am breathing big sighs of relief. There is no swelling around the shunt wounds, except for what is normal after surgery. He is uncomfortable, but that is also normal and his pain is well controlled with the prescribed medications.

Thank you Father for giving me peace and strength. Thank you for taking care of Adam. Thank you for all the prayers and the pray-ers around the country who have so faithfully held Adam before you. And thank you that you always stop by. You are good.

PENTHOUSE LIVING

We're living on the 18th floor. It's not really the penthouse because there is a floor above us, but we're high up and receiving most excellent care, so to us, it's the Stony Brook penthouse suite.
Adam has a private room because of his many needs, the most pressing being his anxiety. To help him function as well as he can, he needs the least amount of stimulus possible. So a private room is perfect, because when Adam is in the hospital, I am too. I don't go home because he can never be left alone. Ever.

We don't want private duty nursing care, and we have learned from so many lengthy stays that you never know when the doctors are going to come in, and you don't want to miss them when they do. They're extremely busy and if you miss one, it can take many hours to connect again.

Adam is a happy and very friendly person. He greets everyone who passes by his room if the door is open, and waves and smiles at the ones he knows. After a few days, he becomes very popular. His nurses, aides, housekeepers, and all the staff grow to love him very quickly. Even when it isn't their turn to work with  him, they often stop by to say hi or to visit for a few minutes. This goes a long way to relieving the boredom of an extended stay. This is such a blessing to him and to us. Everyone is friendly and kind and patient.

The eighteenth floor is dedicated to excellence in patient care, and it shows. The staff all work well together and help each other all the time. It's great to see nurses who aren't working with Adam come and help the one who is when there is something difficult going on. Like starting a new i.v. line. They don't hesitate to ask someone else when they can't get a line started. And the ones who are asked don't hesitate to come and help the best that they can. Sometimes their best is saying that they know they can't get it either. I appreciate this so much. It saves me from always having to challenge them and let them know they get one try. You miss, you're done.

Our church, The Mosaic Vineyard, believes that every life should be celebrated. No one should just be tolerated. Every life has great value and gifting to share, gifting to be discovered. We believe in honoring everyone. To love well means to respect and value each one that comes into our lives. The people who work here on the eighteenth floor seem to understand this very well. We're so very thankful for them.

 

FRUSTRATED? JUST A BIT

The last few days have been somewhat frustrating. We've been waiting for the infectious disease specialists to let us know what's going on with Adam. The waiting is hard, but necessary because there are cultures of bacteria sitting in the lab that have to grow or not grow for a few days before anyone can tell if the antibiotics are working.

There have been three different draws of cerebral spinal fluid (csf) since Adam was admitted to the hospital. There will be another one tomorrow. The first sample showed that there was bacteria present in every sample that was taken; from the catheter in his brain, from the wound, and from the csf. The strain of bacteria is klebsiella pneumonae, a superbug. Hard to kill and requiring longer i.v. antibiotic treatment to kill it. The last two samples of csf were clear of bacteria but still showed an elevated white blood count; the good news is it's decreasing. If the sample tomorrow shows a continuing downward trend, Adam can have surgery to replace his shunt system, but I still don't know how long they'll want to treat him before he goes home.

This has been a difficult time for Adam; in and out of the hospital three times since early February; countless blood draws, ct scans, xrays, and the always popular pokes to get an i.v. line. He's lucky when it's only one stick. Tonight he's not lucky. Three attempts and no access. We're waiting for superman or woman to come over from the surgical intensive care unit to give it a try. They have to succeed because he needs it for his medication. It's getting harder and harder because his veins are small and the drugs are caustic and burn them up.

So we wait, hoping it's easier this time and there's no mining for access; they always say it doesn't hurt when they dig but they're on the other end of the needle.

On a more positive note, Adam is feeling better. He's been up and out of bed the last three days, and he's been taking walks around the unit. He was definitely stronger today. He's eating and drinking well, and his usual happy self for most of the day. He wants to go home; I tell him we can't go home yet, and he wants to know why. All I can tell him is that it's because he isn't well yet, and that we'll go home when he is. He accepts this at that moment, but he doesn't like it and asks again in a little while.

The truth is, I want to go home as much as he does. I want to look at the trees getting ready to pop out in bloom. I want to walk around in our house and soak in the peace and the colors. I want to cook for my family and babysit for my grandchildren and put Adam to sleep in his own bed. I want to scratch my cats behind their ears  and listen to them purr while they sleep in my lap. I want to visit with my family and go to California to see my new grandson. Most of all, I want to sleep in my own bed with my wonderful husband and hold him close all night long. Soon, I will get to do these things. The waiting is hard.

Adam is talking in his sleep. He says, "I want to go home." Me too, Adam. Me Too.

 

SOMETIMES, WE JUST WAIT

The day is coming to a close; the hospital is quieter and the pace has slowed down considerably. Today, as often happens when we're in the hospital, plans changed. Adam did not get his PICC line. The infectious disease specialists haven't decided how long Adam will need to be treated for the infection, which we now know is klebsiella, a bacteria that can be found on the skin. It isn't usually a problem there, but is definitely a problem when it gets introduced into the fluid in the brain. This could have happened when his incision began to leak.  Anyway, since the specialists aren't sure how long they want to treat this infection until they see another sample of Adam's cerebral-spinal fluid,  the neurosurgery team doesn't want a PICC line placed in case he doesn't really need it. So we wait for the next turn of events.

We did, however, go downstairs for a Doppler study. It was a precautionary measure as Adam has been in bed so much this past month. The Doppler was to check his legs to be sure he isn't developing any blood clots. Good news; he isn't. He also got a new i.v. placed, because the other one was four days old, and that's the limit.

It's almost 10:00 p.m. It's dark outside when I look straight out the window, and I can see the lights od the surrounding neighborhoods and streets. When I look down, it's very bright in the parking lots and roadways of the hospital. I can see the helipad for the emergency airlift transports. It's right near the emergency room entrance. Sometimes I can hear and see the helicopters land, but not tonight.

Tonight, as things quiet down, and Adam goes to sleep, I'll be alone with my thoughts and my hopes and my prayers, just like when I'm home and everyone else is sleeping. I'll be waiting to hear about what comes next. It always strikes me, when we're in the hospital for these extended times, how everything in our life centers on the crisis we're attending to, but how everything else in the world just goes on, without even a notice of the dramas taking place in these towers. And I know it will be exactly the same for us when we go home again; we'll go about our lives, almost as if this time never happened. We'll just kind of shed this experience like a butterfly sheds it's cocoon  and flies free. And I'm thankful that we can.

IT'A 5:30 A.M AND I'M UP

I'm awake and the sun isn't. It isn't the first time and it won't be the last. As I look out our window, I wonder how high you have to be to see the curve of the earth; and I know you can from the top of the Himalayas, but I don't know how high that is. We're on the 18th floor of the north tower of Stony Brook Hospital. When I look to the north, I can see Connecticut across the Long Island Sound. The cars below us look like Matchbox cars. The lights below show the remains of salt on the roadways and parking lots; a reminder of the storms of this passing winter. I hope there aren't going to be any more. My life has also been a swirling mass of storms in this passing season. I don't like it vey much. I know God is with me, but I don't know why He allows all of this. I trust Him but I wish He would just make it stop. I don't want anyone to try to defend God for how He does things, and I won't defend Him either. The reason is because not one of us truly knows why He does things the way that He does. This is where I learn about really trusting my heavenly father. "...though I walk through the valley of the shadow of death..." Psalm 23. The shadow of death, not the real thing. When the enemy comes in like a flood, and wants me to think he is too strong for me, I will turn to God and cry out for what I need and what those around me need.

Today I need strength and peace. Adam will have a pic line placed in his upper arm. This is good and bad. Bad because he has to go through an unpleasant procedure, good because he won't have to be continually stuck for blood draws and new i.v. lines. The pic line goes into vessels that are deeper and larger than the ones used for traditional i.v.lines; blood can be drawn through pic lines, so Adam won't need to be stuck everyday to see how the antibiotics are working. I don't know if they'll allow me to stay with him when they do this procedure. I do know they'll give him medication to calm him and help him not resist what takes place. He needs to be still while they cut into his arm and thread the line into his vein. It will be hard for him, but Adam is resilient, and he always forgives anyone who hurts him. And always smiles at them when they're finished. I learn a lot from Adam.

God will be stopping by in all of this; He always does. In reality, He never leaves.

 

28 DAYS AND COUNTING

We're sitting in the hospital once again. We've been in and out again three times in the last month or so. I've decided to try and blog at least a few days a week as we go through this new journey.

I've tried to write a few times in the last several months as we have been battling one sickness after another in our family. I just haven't been able to manage to finish even one that I started.

Part of the problem is time; I haven't been managing time very well. Another part is that so much has been going on that it seems like too much to communicate without being so long as to become the next Great American Endless Whining Blogpost.

So I decided instead to blog about this most recent part of the wilderness; we'll be navigating it for the next 28 days at least.
Adam is in the hospital with a shunt infection. He's 24 years old now, and this is the first time we're dealing with this issue. He's had lots of surgeries over the years, but this is the first time he's gotten infected following a surgery and hospitalization. It's going to be a long haul. It will take at least 28 days to treat this infection, if it's a superbug like the infectious disease doctors suspect that it is. We don't know how he got it or which variety of bug it is for sure, but tomorrow we should have the name of the culprit. And then the decision of which combination of antibiotics will kill it.

Adam was in the hospital for a shunt revision last month, and the doctor decided to externalize the catheter in his brain so that it would drain outside his body for a time, and to keep him on i.v. antibiotics while he went through this process. It didn't show in the blood work and cultures, but he suspected a shunt infection at the time. After many days, Adam went back to the o.r. and they replaced and reconnected the catheter in his head with the catheter in his body, which drains the cerebral-spinal fluid from his brain, down through his trunk and into his belly. He also had numerous ct scans, xrays, and blood work during his stay in Stony Brook Hospital. We went home after 2 weeks total and were so happy to see our house again! That was short lived.

Adam began to have swelling and pain around the incision, and then began draining fluid out the lower end of the scar. This was very dangerous, and left him open to infection from any of a host of bugs in the environment. After only a day, we were back in the hospital. They glued his incision closed and we waited for his surgeon to return from vacation to decide what to do next. Adam was given another course of antibiotics as we waited. He was scheduled for more surgery when his doctor returned, but because of several emergencies that were more in need of urgent intervention, Adam got bumped from the schedule. That night, the swelling in his head went down, and his neurosurgeon decided to send us home and wait and see what developed. (or didn't develop)

What developed was swelling up and swelling down, caused by fluid leaking from his shunt and collecting under his skin. After another 8 days, the incision couldn't contain the pressure and Adam's scar began leaking again. So here we sit, day 3, and here we will sit for another 28 days at least.

Adam has had surgery again, and all the hardware in his body has been removed. The catheter in his brain has been replaced with an antimicrobial variety, which won't allow any bacteria to adhere to it and survive. His shunt is draining externally once again, and will remain so until all traces of bacteria are gone from his cerebral-spinal fluid. He will be tested every few days to see if the antibiotics are working. I'll keep you posted as to what's happening.

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you." Isaiah 26:3. I can't say that all my thoughts are on Him all the time, but I can say that He is faithful, and for most of these times, I am at peace. I don't like what's happening and I truly wish we didn't have to walk this path, but I'm thankful that God is with us and that He sustains us through it all. I am trusting God to bring us through this, and that there will be things we learn, victories to celebrate, and stories of His goodness to share.

I'm also thankful for the many, many family members, friends, and friends of friends who are praying for us and especially for Adam. You are worth your weight in gold. Better still, make that diamonds.
 

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.



 

MORTIMER: a children's story

In a little town, on a hill far away, there lived a family of birds. They were all, every one of them,  a lovely shade of blue, with big, green eyes. And they were happy. One day, the mommy bird knew, just knew, that she wanted just one more baby bird. She knew, just knew, thet her family wouldn't be complete without just one more baby. So she started to build her nest just a little bit bigger. The family began to get excited when they saw her working hard to get ready for the new baby, and they all, every one of them, wanted to help.
All the little bird brothers and sisters were flapping around and asking, "What can I do? What can I do? I want to help." So the mommy bird gave each one, every little one of them, their very own job to do.
One  brother helped to gather sticks for the nest. One sister helped by shaking out the blankets for the new baby. Another gathered leaves to line the nest, and another gathered soft dandelion seeds to place on top of the leaves to make the nest even softer. And when all, every little thing, was done, it was time to lay the egg for the new baby bird.
It had been a busy, very busy day for the family, so after the daddy bird came home with dinner, they all ate together and then the little birds went to bed. The mommy bird settled into the new, soft nest and waited for her baby egg. The daddy bird flew back and forth and back and forth, and watched over his family. And he waited, just waited for the new egg.
The next morning the new egg was there! Everybirdy was so excited! But they had to wait a little bit longer for the baby to hatch. The mommy bird sat on the egg, and when she was tired or needed to eat, the daddy bird took a turn to sit on the egg and keep it warm. After a few days, they began to hear sounds coming from the egg, and they knew, just knew, that it was time for the baby to hatch. How wonderful! This day was going to be the baby's Hatchday!
Before too long, the egg cracked. It cracked and cracked some more, and the little bird inside began to stretch itself and push itself, and suddenly, out popped a little bird with RED feathers and GREY eyes!
OH MY GOODNESS! That family was so surprised! There had NEVER before been a red bird with grey eyes in their family.....what would they do? How would they take care of this different baby? What would everybirdy in the town think?
"Well", said the mommy bird, "This is our baby, and we'll love him and learn about him, and it doesn't really matter what everybirdy in town thinks. He's our baby, and we love him just the way he is." But in her heart, she was very sad that her baby was different. She was afraid that other birds wouldn't like him, and that he wouldn't have any friends.
Mortimer, however, didn't know that his family was worried about him.He didn't know he was different. He just knew he was hungry. So he peeped and he cheeped, and the mommy bird was kept very busy feeding him and taking care of him. Before long, he was jumping out of the nest. The mommy bird kept putting him back in the nest to keep him warm and safe, but he would jump out of the nest again. She was getting tired. Finally, she couldn't keep him in the nest any longer, and it was time to teach him to find worms and bugs for himself. So she took him outside.

Mortimer was so happy to be outside! What a big wonderful world it was! There was so much to see and so much to do! He flipped and flapped his wings and ran around and around trying to see and touch all the flowers and bugs and grass and ...other birds. Other birds? Yes, the other birds came over to see this new bird with RED feathers and GREY eyes. And some of them were not very nice. They STARED at Mortimer. They POINTED at Mortimer. They whispered to each other about Mortimer. And they flew away. Mortimer didn't understand this. He wanted, really wanted, to get to know the other birds. He was very sad. His mommy bird was sad. His brothers and sisters and daddy were sad too. BUT.... there was one bird that didn't STARE. She didn't POINT. She didn't whisper to anybirdy. And she didn't fly away. She flew right up to Mortimer and said "HI!"  Mortimer said "HI!" right back to her. She said, "I never saw RED feathers before. I think you're beautiful!" Mortimer smiled. His mommy smiled. His daddy and brothers and sisters smiled.
It was turning out to be a good, a very good day.
The moral of the story is "When everybirdy else is afraid, you don't have to be. It only takes one  to make a difference for somebirdy else."

 

HURRICANES

Last year it was hurricane Irene. This year, hurricane Sandy is on the way. Last year, I thought often of my friend Irene, who had died of cancer a few years before. This year, I'm reminded of hurricane Gloria and the damage to Long Island. Trees were down everywhere, power outages went on for weeks for some residents, houses and cars were damaged and some were lost. I don't remember the count of lives lost, but I believe it was small.  We lost power for ten days. It was 1985, and the weather was still warm, so although it was challenging, it wasn't too bad. We had fun camping out in the living room during the storm, and going outside in the wonderfully fresh air as the eye of the storm passed over our house. As far as damages, we lost ten trees on our property and in our woods out back, but our house was completely spared. We had plenty of wood for our Pillsbury stove for a long time after that, and we shared some of it with friends. How I wish we still had the wood burner! We took it out when we remodeled the house and moverd to Florida for a year. We thought the house would sell and we'd be Floridians forever. God had other plans for us. But that's a story for another day.

This approaching storm feels like it has the capacity to be another Gloria for Long Island. We've stocked up on essentials and I'm cooking ahead of time for things that I won't be able to make if we lose power for a few days. Cooked meat holds up well in ice chests and makes great sandwiches. I have a gas stove, so I'll have my cooktop, but not the oven as it's electric start. Matches work just fine for lighting burners that are electric start, but are not a possibility for ovens. We have propane for the grill, batteries for the flashlights, candles and oil lamps for lighting. Prayers going up for the storm to downgrade and become smaller; it's four hundred miles wide at this time, and moving at ten miles per hour. Flooding is a serious concern in this storm, as it was in Irene. My family upstate is still in the recovery process from all that they lost last year.

Are you ready? Are you listening? Warnings are all over the different forms of media. For those who can hear Him, God is warning too. Don't get caught short; PREPARE. Don't be afraid, be ready.

Love and peace to you today. I'll check back with you soon.

Cat Tail

The other day, a friend posted a picture of her calico cat. In case you don't  know, calico cats are a mix of black, white and orange patches of fur. They are almost exclusively female; rarely, a male is born with that coloring.
Years ago, when my daughters were little. one such beauty came into our lives. This little cat was showing up at the bus stop every day for about a week, and the kids were all saving bits of food from their lunches and feeding her when they got home in the afternoon. One evening, our neighbor came knocking at the back door, cat in hand, asking me to please take her in as a bad winter storm was expected and she was afraid the cat would freeze to death. She doesn't like cats, but she has a tender heart. As much as I wanted to take the cat in, I said no. We had a dog that HATED cats, and I was afraid she'd kill it. My neighbor persisted, pleading for her life. I really wanted her. Calicos are my favorites when it comes to female cats. I knew it would be trouble, not only with the dog, but with my husband. He was not a fan at all. He didn't grow up with pets, and having a dog was enough in his opinion.
I brought the cat in and shut her in the bathroom. I warned the girls to not open the bathroom door without my help. They were only too happy to comply. They wanted the cat too.
Paul came home and I will not write what his response was to the situation. He finally said, "If you can get the dog to accept it, you can keep it." He was on pretty solid ground for getting rid of it, as we had tried in the past to have kittens, and had to give them up.
So, over the next three weeks, the cat lived in the bathroom. I prayed and asked the Lord to make a way for it to all work out. For the first week, whenever I put the dog outside, I let the cat roam around the house. She would investigate and she'd get in my lap and purr. Then I'd put her back into the bathroom and let the dog back inside. She would go all over the house and smell every place the cat touched, and then spend the rest of the day with her nose to the crack under the door, sniffing and snuffling as hard as she could, and guarding just in case the invader made an appearance on her side of the barrier.
The next week, I would hold onto the dog's collar, and let the cat out of the bathroom. I held on tight and prayed as we followed the cat around the house. The dog would stiffen up and bristle her fur, and follow the cat everywhere. The cat ignored her.
The third week, I decided it was time to let go of the dog and see what would happen. It was absolutely amazing!. I held the dog, let the cat out of the bathroom, and then let go of the dog. She followed the cat with her nose to its tail, all over the house. The cat never even looked at her! I couldn't believe it. If you know anything about cats, you know they are not too inclined to let a strange dog get familiar with them and have nothing to say about it. My husband came home from work and was totally dismayed that he had lost the battle over having another animal in the house.
Alpha, the calico cat, lived to be twenty years old. She was the first cat I had after being married. My husband grew to love her too. The girls adored her.

 We always had cats when I was growing up. But...mine had a pattern of suddenly disappearing. When I was ten years old, I went to visit a cousin. When I came home, my cat and my sister's cat had gone to live at my grandmother's farm. In their place, my parents kept one of their kittens, a black and white male. I named him  Irving. They tried really hard to convince me to name him something else. I wouldn't budge. I later learned that it was my father's middle name, and he hated it. I secretly loved that. I was very angry over losing my friend. She disappeared after being sent to the farm. My sister's cat didn't. Irving got sick a few years later and died. My father told me he had cancer; he was hit by a car shortly thereafter. Dad brought him home and buried him. Years later, after having cats with health issues, I realized that it was an abcess,  probably from fighting over breeding rights. Our cats weren't neutered.( Most people didn't bother with that back then.) My parents  weren't much for vet care. With five kids, they probably couldn't afford it.
My sister's dog died around the same time, and they got her another one. I was told I couldn't have another cat. I couldn't understand that and made a federal case out of it, which was a real stretch for me: you didn't disagree with my father, no matter what. Eventually, a long-haired orange female kitten came into my life, and my heart was happy again.
A few years later, she had some skin and digestive issues, and one day when I was in school, she disappeared. My father got rid of her. They never told me what happened to her, but I think they had her put to sleep. My heart was broken once again. They kept three of her kittens, but it wasn't the same.
Having Alpha the lovely calico for so long brought such healing to my heart. She was mine and nobody took her away from me. When she got very old, and developed a fast growing tumor in her liver, I made the difficult decison to put her to sleep. She had lost her hearing several years before and was losing her eyesight. The tumor was inoperable. She had a hard time getting into a comfortable postion, even to sleep, which she did most of the time. I cried like a baby at the vet and wore my sunglasses to hide it. I brought her home and we buried her in her favorite flower bed in the back yard. I was sad for a long time.
Some time after her death, I had a growing realisation of just how much my heavenly Father loves me. I saw His hand in my life with the cat so clearly. He brought her to my doorstep that freezing winter night, worked things out between her and the dog, and kept her healthy for twenty years. She was a gift to heal the wound in my heart over all the other lost kitties. The anger at my dad over them was released and healed. I forgave him. (But I still laugh over Irving; I can't help it) God stopped by and showed me that He is in the little things that are really big things, and that a daughter's heart is important to Him. He spoke to me and told me so. I learned that He can be trusted to keep my heart safe.
Thank you, Erinn, for posting the picture of your baby. She reminds me so much of mine. I hope you get to enjoy her for twenty years. Thanks friends for stopping by. I appreciate you.

 

MARIA'S ANGELS

 Ginnie, some of my memories come back alive after reading your post “Broken…..or Not”. The Lord wants me to share them. I love the way God stops by you and you use it to talk to my heart,to stir up my memories,and teach me and challenge my life.

 I was ten years old when on my street in a small village where I grew up, I saw a young man. I did not know who he was; he was attending a wake at the house next to mine, and he was crying; his image captured me and it got stuck in my mind. I overheard the adults saying that he used to go everyones' funeral. Later that day they explained to me that he was born with special needs. At the time there was nothing for children with special needs; families kept them hidden inside their home. In my young mind I convinced myself that he was an angel from God and he was there to help us “normal ones”. I knew right then that I had to love him with all my heart. God was in him and he was my way to be closer to God.  His name was Gino. He could not speak,but every time I saw him I smiled and he smiled back and in his way he was telling me “ciao”. Each time, my heart warmed up and was filled with joy.

When I went to high school I commuted to the big city. I met more angels and started to love them more and more. I remember telling the Lord how blessed they were; “Lord I can see You in them… I can see your love in them..  Instead I had to work so hard to be with You, to see You, to hear from You.”

 

In 2007 here in the U. S. I was looking for a home church; I went to visit a church few minutes away from my home. After the service people were walking to the front to get prayers. In there
I saw my angel; a lady was helping him to walk after he went for prayers. He was on his way back to his seat. My eyes met with her eyes and we smiled to each other. I felt all the Lords love, grace, kindness, and compassion. The Lord was confirming that I had just found my new home church and He was using my angel to touch my life and other people's lives.

 

That Angel was Adam with you Ginnie, both made a difference in my spiritual life. Now your new ministry In His Image is blowing me away. I’m praying the Lord to use me for his purpose..

Thank you for asking me to write this. It was a blessing J

 

Maria also told me that she feels that Gino was expressing the grief of the families as he would sit weeping for those he never even knew.

 

Thank you Maria. Your story is so beautiful and blesses me deeply. The Lord is using you already.

Broken...or Not?

I was listening to the Lord the other day..it was His turn to talk. ;0} I was talking with Him about Adam and I don't remember exactly what I had been saying to Him, but His answer was; "You want to fix him, but did I say he was broken?"
That stopped me where I was. I didn't realize that I thought this way. I pray for Adam all the time, but realizing that I think he's broken revealed a great deal to me.
As I pursue a new direction in ministry for people with special needs, my understanding of how the Father sees them has deepened. I have always known that He loves them just the way they are, and that they are created in His image and likeness. I've come to understand that they are created with gifts and abilities from Him that we often don't see. One of these is their ability to know and understand God in ways that go beyond what I know. I see this in Adam.
So what did God mean in what He said to me? Did He mean that I shouldn't pray for Adam to be healed? NO. Healing is the children's bread (see Matthew 15:21-28) The point is that Adam isn't broken just because he's in need of healing. The Father sees him as whole. I need to see him the same way.
In Adam's spirit, he is complete. He knows and loves God. On the outside, he has many needs, but he is not broken. He is just in need. As I continue to pursue the Lord in this awareness, I know He'll teach me more. For now, I've settled inside as I continue to pray for him.

When a child is born with special needs, or becomes ill and then develops disabilities, the family's dreams for the child are crushed. They know he or she will never become the doctor, lawyer, teacher or parent that they were thinking about. Perhaps their child will never speak, walk or fully know them.There may be life long needs for medical interventions or surgery. There are many degrees of disability, and many depths of pain for the family. Our family knows this well, and each one of us deals with it in our own way. I wrote a bit about that recently.(Just One Of Those Days) It had to do with milestones that Adam will never reach. Like driving, or dating, or just hanging out with friends. But it's also his need for help with everyday living skills. Our desire is for him to be more independant, and over time, he will become more so, but he will always need someone to help him. He will never live on his own. I feel badly for him about that, but he doesn't seem to care. He likes it here. :0}

But what was my point?....oh yes, broken or not broken. When our dreams for Adam came crashing down, I guess I saw him as having gotten broken, because as far as we know, he was not disabled when he was born. He became seriously ill, and everything changed. Personally, I felt like we lost who he was supposed to be. I felt that he was cheated out of becoming everything he was meant to become. And our family was too. God stopped by the other day and gave me a reality check. Adam is not broken. He's fine the way he is. God knows him and he knows God. I have many typically developed friends and family whom I can't say the same about. It's a matter of perspectives, isn't it?
I like the Father's perspective on this subject much better than my own.

Have a great day and enjoy all the blessings in your life. Be thankful for all that you have. Love the ones around you to the fullest that you're able. They need that and so do you. Thanks for visiting here again. I hope you make a return trip soon.

A Very Small Reflection

Today, we remember that 1st September 11th that makes us realize that no one is invulnerable. We were shocked at just how vulnerable our country really was. It's not a day for political posturing, it's a day to remember those who lost their lives in an unprovoked attack. To remember those innocent victims, and to pray for their families. It's a day to be thankful for our military and security organizations, who lay down their lives for us and protect us every day. We don't often see them, but they are there.
I'm so thankful for all that I have, and for all those who are in my life. 9-11-01 made me realize how blessed I truly am. If you've ever been in my heart, you're still there. If I haven't met you yet, there's still plenty of room for more.
Spend time today to be thankful for your life, your family and your friends. And for the place where you live. Many of us have so much more than the many who will never own a computer and be able to read this post. May God bless us all today.