I Worked On This Before, But I Just Can't Finish It

 I have found that raising typically developing children has many challenges; raising a child with challenges has changed me more than raising my three girls ever did. Adam has shown me "Jesus with skin on" better than anyone else I have met. He loves unconditionally and does it so well. He will forget your name but never forget you. He will ask you the same thing over and over again, but never get mad at you for reminding him that he just asked you that.  When he does this, he is either not able to process your response, or he's stuck in a loop and can't escape it. He doesn't hold it against you when YOU can't remember that HE can't remember that he asked you that already. He doesn't resent you when he asks you your name and you tell him, "You know my name." He does get upset though, because he doesn't know and that's why he asked you.
 He lives with pain and mostly doesn't complain. He has multiple surgeries and doesn't hate the doctor that cuts into his body so often. In fact, he loves him. Our beautiful special needs children are indeed a testimony to the darkness that there is a Kingdom of Love, and a few of its residents live and  love and battle from the time they're born to bring the light of that Kingdom to the earth. 
I think I'm done tonight. This is a sensitive spot and I think you get the gist of what I'm saying. No need to press any further. 

RIP CURRENT

I woke up early this morning, about an hour before I had set my alarm clock to jar me back to consciousness. I was lying in my bed and praying before getting up to join in on an early morning prayer call. I remembered a time when I was swimming and got caught in a rip current. I began to feel fear creep over me, but I prayed and refused it. That experience was twenty five years ago; why would I let it bother me now? I wouldn't.
 Have you ever gone swimming and been caught in a rip current? It can be a frightening experience. Many years ago I lived in Florida for a short time. I didn't know many people, and so, when my children went to school, I often went to the beach by myself. I always stick to the "Don't swim alone" guidelines, so when I went in the water, I would always talk to someone near me, and keep sight and awareness of them so I would have a "buddy" in case I needed one.
One afternoon, I went in the water and there was a man swimming nearby. We chatted briefly; it was a beautiful day and the water temperature was perfect. The sun was glistening on the waves. A perfect time to float around and enjoy the surf. I swam out to a distance that I knew was far enough for me; I floated and swam around for a while, keeping my eyes on the shore and my swim buddy.
After a while, I was a little tired of swimming, so I floated before starting back to shore. I rested for a few moments, flipped over and looked again; I had drifted further away from shore than I realized. I wasn't really worried as I was a strong swimmer, but I was much further out than I had been before I started to float. I headed back to shore. I was quite far from my swim buddy and I was a little nervous. How could I have drifted such a distance in such a short amount of time?
I began swimming with long, strong strokes. I checked again and saw that I was even further away than before I had started back. Now I was getting frightened. My swim buddy was far away and looked SMALL. No matter how hard I swam, I couldn't get closer to shore, and was actually being drawn further away. I didn't understand what was happening.
I thought of myself drowning and my children being left to grow up without me. There was a lifeguard on the shore, but I don't think he saw me and I didn't wave or yell for help; I didn't think he'd hear me and I needed to save my strength for swimming. I prayed to the Lord as I struggled against the tide.
Then I decided to swim parallel to the beach. I turned south and swam as hard as I could. I was able to make progress and to get closer to the shore after I had swum a few yards. I kept going and finally made it far enough in that I could stand. I was exhausted. I walked out of the water and sat on the sand for a few minutes to catch my breath. Then I walked back up the beach to where my things were.  I had probably drifted a quarter of a mile or more before I was able to get out of the water. I saw my swim buddy and he said "Hey! There you are! I was worried but then I saw you swimming so I  knew you were okay. You were really far out there! " I just laughed and said "Yeah, I was. Thanks for watching for me."
Some time later I learned that what I experienced was a rip current. I was watching a program on water safety, and discovered that what I had done as I was caught in the current was exactly what you need to do if you get trapped in one and can't escape. It's impossible to swim straight to shore and break free; you have to swim parallel and come in to shore gradually until you're past the beginning of that current. You can say it was instinct, but I know it was the Lord who gave me wisdom that I needed for the crisis I was in.
I feel that this morning, the Lord was showing me how easy it can be to drift into fear. We aren't paying attention, we're just floating along, and something unexpectedly draws us into a mindset that we weren't prepared for. It catches us by surprise, and instead of swimming away from it, we've let ourselves get caught in a powerful current. It can be overwhelming and we don't know what to do. I want to encourage anyone who's caught to call out to Jesus. He can give you wisdom to deal with your fear, wisdom on how to get free. He is your safety net, your peace. He can bring you to restful waters, where you can get back on your feet and gain strength again. He will teach you how to stay free if you will get your focus on him and keep it there. Just as he gave me wisdom to swim with the tide instead of against it, he'll show you how to swim free of fear. I wasn't afraid of being in the deep water, I was afraid of being swept away by forces that were too strong for me. In the same way, I'm not afraid to be in the depths of God, but I'm also not afraid of strong currents from the enemy or just life situations that try to drown me. I know who my Redeemer is, and that he will get me out of the most powerful tide of oppression if I reach out for him. I'm reminded of Peter, who walked on the water with the Jesus, but then looked at the waves and began to sink. He got his eyes on his situation and forgot the Lord. When he cried out, Jesus saved him. Just like you and me. We get our eyes off the Lord and onto the things that frighten us. If we cry out, like Peter did, he will rescue us and ask us why we doubted. And then give us another chance to start over, and everything we need to begin again and to succeed and do well.


I'm trusting Jesus today. As a matter of fact, I'm trusting Jesus for every day. God stopped by this morning and reminded me of how easy it is to get off track so that I could share my story, and maybe encourage someone else to look away from fear and look to him for wisdom and courage. May God bless you with his presence today.

MY THOUGHTS FOR TODAY

I am an American. I am not a Republican. I am not a Democrat. I am not a Tea Partier. I am not an Anarchist. I do vote. My heritage is French, Irish, English, Dutch, Scottish, Spanish, and Native American. I consider myself to be a patriot. I love my country. My father's people came here on the Mayflower. My lineage can be traced to the Revolutionary War on both sides; warriors from both sides fought for freedom.
On the outside, my skin is beige, my eyes are green, my hair is brown. (well, mostly; it's a bit silver too) On the inside, my blood is red, I have two lungs, two kidneys, one heart, and lots of other stuff that is the same color as every other person on earth. That's my body.


 I also have a soul. I feel, think, and make decisions with my soul. Other people do the same.


 I also have a spirit. My spirit has no earthly color, but it is full of light and bears the colors of heaven.


 I have a Father who said that I'm made in his image and likeness, and he said you are too. So what does that mean? Well, it doesn't mean that God is beige. He also isn't black, brown, red, or yellow. We all look like our Father on the inside, in the deepest place of who we are. As proud as I am of my earthly heritage, I'm so much more blessed to know that my heavenly Father loves me, and that I'm a citizen there first, before I am a citizen here. So are you. And yes, he does see our color. As a matter of fact, he loves the variety. That's why he made us so different from each other. Maybe we can begin to see ourselves in the light of his love for us. Maybe we can take a breath and try again to love the way he loves. Maybe we can stop listening to the t.v., the radio, and all the angry ones who stir up trouble, and get on God's side of the troubles our world is facing. Maybe we can listen to him and get an original thought about how we can change things instead of repeating what so and so has to say. Maybe we can even love one another as he has loved us; after all, it cost him plenty. It cost the life of Jesus. One who laid down his life for a friend. You. Me. He calls us friends.  He died for us, and before he did, he prayed, "Father, make them one, just as you and I are one." This is the prayer of Jesus for the world. This is my prayer. May it be yours too.

THERE WERE TWO BROTHERS........

Many times, there are battles between family members. Sometimes the war goes on for so long, that the combatants forget what started it. I think there's an old offense, an ancient one at that, which affects the whole world, and it continues to this day. This is between two brothers and their children.

In the Old Testament, there was a father named Abraham. His is a story of a faithful servant of the LORD God. He had many failings along the timeline of his life, but he is mentioned in the New Testament as faithful. "By faith Abraham obeyed when he was called to go out to a place that he was to receive as an inheritance. And he we out not knowing where he was going." Hebrews 11:8 ESV  "Therefore from one man, and him as good as dead, were born descendants as many as the stars of heaven and as many as the innumerable grains of sand by the seashore." Hebrews 11:12 ESV Other acts of his faithfulness are also mentioned in this chapter. And also that his descendants would be named through Isaac. This was the plan and purpose of the LORD, and the Jewish people are his descendants and live all over the world. But their homeland is the nation of Israel.

There is another child of Abraham, his firstborn son, and his name is Ishmael. He too is the father of many and of a nation. He also has a prophetic word spoken about him by God. We find this in the book of Genesis. When Hagar his mother was cast out, and feared for the life of her child, the angel of the LORD found her and spoke encouragement to her, and that her son would be called Ishmael, which means God hears. The word to her was that he would be "a wild donkey of a man, that his hand would be against everyone, and everyone's hand against him, and he will live in hostility toward all his brothers." Genesis 16:12 NIV

If you follow this simple line of thought, you can see that we still live with the anger of this rejected son of Abraham, and his hand is against his younger brother to this very day. At this writing, the hostility between them has increased once again, but it presents as a battle over territory and a conflict of religions. The root is sibling rivalry taken to the nth degree.

For nearly four years I have been sitting on this revelation from the LORD. I have shared it here and there, but have believed that I need to write about it and share what I have learned with anyone who cares to hear what I have to say. I am beginning to do this now. Why is it important? Because I believe there needs to be a new way of looking at this and praying for these brothers. The LORD Jesus is returning soon and these families are to be part of the Kingdom of God. Those who know him now need to be able to share his love with those who don't, including the children of Isaac and Ishmael.

Four years ago, I was frequently hearing these words spoken; "I am the elder brother", and not knowing where it came from or why I was hearing it.  I sought the Lord for the answer, but didn't hear one. On a morning as I was preparing for my weekly prayer meeting, and praying for the presence of the Lord to be with us, I began praying about Abraham. He had been on my mind a great deal over the previous few weeks, and I was probing the waters for understanding.  "Lord, I mean no disrespect to you or to Abraham, but if he had waited for the fulfillment of your word to him, Ishmael would not have been born and there would not be the turmoil in the Middle East that there is now." I felt the presence of the LORD increase and he said to me " Ishmael is the elder brother in the story of the prodigal son."

I stopped pacing back and forth. "WHAT? Was that really you?" He answered "Yes. Ishmael is the elder brother." I was completely blown away by what I had heard. I also knew it was true.

Much has been written and taught about this parable, I don't disagree with any of it, nor do I think that what I have heard as a revelation from the Lord should replace what the scholars have written about for many generations. I am simply sharing something God said to me to provoke me to prayer and sharing and writing.

There is much more that I could share, and perhaps I will in subsequent posts or a small book, but I feel that I needed to begin to share my truth in this time, and not in the years it could take me to publish a book. Prayer is needed now.

What the LORD showed me about the parable is that it is unresolved. We don't know if the elder brother ever returns; we don't learn if the family was ever reconciled to each other.  This is the situation in the Middle East to this day. The brothers are not reconciled. The Jews and the Arabs are brothers. They both claim Abraham as their father. The book of Genesis tells us something  that is very interesting; Ishmael and Isaac come together to bury their father. (see chapter 25 verse 9) I believe this is significant, very significant to my purpose here; when these brothers bury their father Abraham, it will be because they have seen that they have One Father, the God and Father of us all, and will have accepted his son Jesus, the only Lord and Savior. Our prayers for their reconciliation and salvation could hasten this day.

Please don't stone me for this writing and please pray that the Lord will show you if there's any truth here or not. You don't have to embrace it if you don't want to. Hatred of one nation or the other will never bring about the reconciliation that is so needed; hatred of one nation or the other will never cause you to share the gospel of Jesus with the one you hate. Please pray. Feel free to comment. Please share if this touches you. It broke my heart for them when the Lord showed it to me. May this writing do the same for you.

 

THE MINISTRY OF PRESENCE

Loneliness. Not fitting in. Sickness. Surgery. New baby. Special needs children. Speaking a different language. Sin. Sorrow. Depression. Anxiety. These and a host of other conditions cause people to be separated from their friends, family, co-workers, and church. Too often, the "out-of-sight, out-of-mind" phenomenon happens. You know what that as. We stop thinking about someone we don't see around anymore. They're away too long and we stop trying to connect with them. Or, we don't understand at all what someone else is going through, and we're afraid to try and help. We just don't know how. Different people, different reasons.

Recently, during a time when we were isolated from people because of frequent and lengthy hospitalizations, I had the time to think about this. People would check in and ask if we needed anything, and I would say, "A visit would be nice.", or "Company would be nice." In times like that, company is what I need more than anything else. However, few people seem to understand this. They have a need to serve in some way, and can't seem to see that, well, a visit would be nice!

This is the ministry of Presence; the ability to spend time with someone else, just for the sake of being company during their trouble. I often wonder why so many, myself included, have such a hard time with this. I don't have an easy answer, because I would guess that every situation is different, just as every person is different from every other person. But I bet that at least one reason is that we don't value our own gift of presence to someone else, even if we know how much we want it for ourselves when it's our turn.

Perhaps if we would let ourselves be content to sit and have tea together, or a soda, or water, and just let the other one speak, we would be surprised, at a later date, to find how important that was to the one we sat with. Sometimes it's to just be with the one we visit. Being alone is often lonely and sad. We don't need to have the answers to someone else's problems, we just need to join them in their suffering.

The Ministry of Presence. Not an official ministry of the church; it can't be regulated and it can't be forced. It's a call to love and lay ourselves down for each other.

How about that one who's been missing from your life for a while? Today is the best day to try and  reconnect. Consider this a challenge. And please let me know how things work out.

Love and blessings to my readers today.

A DIVINE APPOINTMENT

Adam was admitted to the hospital in early February for a shunt revision. You can read about this in some of my previous posts. However, during the first few days we were in the hospital, it was especially noisy and nights were frequently being disrupted by patients having meltdowns and by head trauma patients becoming increasingly and loudly confused and combative. There were more Code calls those first few nights than I've ever heard in all the times we've spent in Stony Brook added together. I prayed for each situation, and asked the Father why there was so much going on. It was really so unusual. I also had some very specific nightmares, which is unusual.

I am usually friendly to everyone when I'm there; it makes it so much better when I keep a positive attitude. I try to be pleasant and helpful to other families; you meet each other in the hallways and in the little kitchen area that is available for snacks, coffee and tea. There's a small refrigerator where you can store some food or drinks for yourself, and a rack to return meal trays if you don't want them in your room until the food service worker returns for them. You tend to bump into people when you're in there. It seems silly to not at least say hello, or to chat for a moment if you have the time.

One evening, I went to get some tea. Adam was sound asleep, so I wanted to walk a bit and stretch my legs, and get some tea before I settled in for sleep. I met a man named Joe that night. He was tired and lonely and wanted to chat. His mother had been on the hospital for a couple of weeks, and she wasn't doing very well. He didn't know how much longer she'd be in, but it didn't look like she'd be getting home any time soon. we spoke for a time, and he told me he was praying for all the patients every night while he was there. He told me that he was sending "white healing light" to everyone. The alarms went off inside of me, but I was patient and asked God for a way to address this with him if he was open. We continued to talk, and he mentioned  God and Jesus, and I asked if he knew them. He said that he did. So I asked if Jesus was his savior, and then as ked if he was the Lord, and he replied yes to both questions. So I told him that it wasn't good for him to be praying for "white healing light" to be released for the patients, and when he asked why, I told him that it was a wiccan prayer. He knew what I meant and was upset about it.  I told him that believers pray for healing in Jesus' name and not for white light. Jesus is the only true healing light. I encouraged him to keep praying but to ask Jesus to release healing instead of what he'd been doing. He said he would. We talked for a while longer, and then I asked if I could pray for him. I just started to bless him with the presence of God, and to ask for peace to come to him. I asked God to lift his worry and fears, and to give him joy, and to show Joe how much he loves him. He was laughing and his entire countenance brightened. He told me that he wanted to weep so badly because of how wonderful he felt and how changed he was, but that he was so full of joy that he couldn't cry. He couldn't understand everything that was happening to him, and he thanked me over and over again. He told me that I had changed his life in those few minutes. I assured him that it wasn't me, and that it was the Father, who loves him so much that he caused us to meet that night.

Joe gave me his business card, but first told me that I wouldn't like it. I said I'd take it anyway, and it was covered in skulls and symbols from many different religions. I smiled and told him to get some new ones made up. He said he would. I went back to my room and he went to his. I saw him a few more times that night and the next morning, but his mother went home two days after we met! God's timing is perfect, and perhaps the change in his prayers freed her from what he'd been doing before.

The other wonderful thing that happened was that when Joe stopped praying his prayers, the craziness in the hospital stopped too. The head trauma patients calmed down, and when they did have episodes, they were much less intense, and also quieter. There were still Codes called at different times, but they were much less frequent.

God is everywhere. We aren't always aware of his presence, but present he is. He stopped by in the little kitchen on the eighteenth floor and rocked a man's world. Mine too. But then isn't that some of his best work? How he does surprise me.

Peace and blessing to you today.

LATE TO BED, EARLY TO RISE....makes a woman cranky

Good morning. It's 6:30 and I've been awake since 4:11. Secondary insomnia, they call it. Yes, it has a real name. It's when you wake up after sleeping for a few hours, and can't go back to sleep. This time, I have one of the neighborhood raccoons to thank for my dilemma.

I had fallen asleep on the couch after watching a few of the original Star Trek episodes on BlueRay. Spock actually looks green. You can really see how low tech the sets and effects are, but that doesn't matter to a true Trekkie. You watch because you love it. Simpler technology from a simpler time. Television wasn't even fifty years old when the series was made.

Any way, I woke up suddenly and didn't know why, but something wasn't right. Adam had a bad time right before bed, with a violent, screaming headache. It's part of the healing process for him as his body adapts to the new shunt system, but it's really awful. He screams in pain until the valve opens and drains the extra fluid from his brain, and there's nothing I can do to help him. I pray, and hold him if he lets me. I press on his forehead when he wants that, and I keep him from lying down, because that makes the pressure worse. After a while, the valve opens and he stops screaming. He usually goes right to sleep after one of these episodes, no matter what time of day it is. Last night he stayed awake for a while and talked with me. He held my hand for a bit longer than that, and finally went to sleep. When I woke up so suddenly, I thought he was having a problem again, but he was peacefully sleeping.

I checked around for cats getting into mischief, but I knew it wasn't them. It was outside. I looked out front and there was an unusual light shining from down the street somewhere and onto the porch, so I turned the light on to let anyone around know that someone was up and not to bother looking for trouble over here. I went back around to the kitchen and turned on the light by that door too. I was a little bit unnerved by this time, and I knew something was out there.

I needn't have worried, because it was just one of the neighborhood raccoons paying a visit to my garbage can. These guys not only take the cover off and dine alfresco, sitting right in the can sometimes, but they bring their take out onto the deck and relax there while they enjoy their chicken bones and other leftovers. There was only one this morning, a big one. I'd guesstimate him to be about twenty pounds. We have some bigger and some smaller, and there are often three together, but he must have decided not to share this time. I watched him for a few minutes, and the Midnight the cat came over to investigate. Roger the raccoon didn't appreciate the additional audience, and he left. He was finished eating any way. And he didn't leave a tip. 

A Little Levity In the Midst of Drama

Being home is still settling in. I wake up each morning and it's so fantastic to realize I'm in my bed AND got to sleep all night with no interruptions for vital signs, blood draws, or just checking in. I'll give you an example.

When you're in the hospital, they measure your output of pee. If you don't pee, they become very concerned and insistent that you produce on demand. Not a big deal for most, but a very big deal for Adam. He goes three times a day, and not on their schedule. And, following surgery, where he has gone without food or drink for many hours, as well as having been given drugs to dry him up, he does not pee. You can do everything in your power, but until he is completely hydrated again, AND  his kidneys have awoken from drug induced slumber, it ain't happening. This can take thirty-six hours or more for him to regulate. It drives his nurses crazy!

We had a wonderful male nurse for three nights after Adam's last surgical procedure. He was kind and considerate, but he was very worried about Adam's inability to pee at night. It didn't matter that he had gone during the day, he HAD to go overnight. I explained that it probably wouldn't happen, but Henry insisted. So we tried to comply. I made Adam drink water, I ran the water in the sink, and I begged him to try. He gave me the sly eye glazed over look that means, "Leave me alone". Even warnings about  being catheterized made no difference. Henry checked with neurosurgery and checked back with us; he woke Adam three times the first two nights. Neurosurgery told him it was ok for Adam to go twelve hours without peeing, but he couldn't deal with that. The morning nurse told him to let it go, that Adam was like this, but the second night he did the same thing. The next morning she told him again to leave Adam alone; Grammie knows him best and he had gone enough during the day.

The third night, I gave Henry an ultimatum; leave Adam alone  or he was fired! He laughed and said "You're  kidding me! You'll fire me?" I told him he was on probation. We laughed and he said he would leave us alone.

About three o'clock in the morning, Adam woke up with a frantic urgency to go. I gave him the urinal and he filled it. Yes, that's right, filled it.  I went to the door and called "Henry!" and held up the urinal.  He came quickly down the hall and reacted with an "OH MY GOD!!!!" And I simply said, "I told you so."  He asked me if he was off probation now, and I assured him that he was.

What a good nurse, and what an excellent sense of humor. It's things like these that make the time spent cooped up more bearable. Henry was off probation and he got the award for putting up with my sense of humor and also for his excellent care of Adam.

This is just one of the many stories of the kind of care Adam receives while he was in Stony Brook UHMC. All the nurses, all the staff, every person who works on that floor do their work with a spirit of excellence. We couldn't ask for better. I actually resist telling any particular story because every person who worked with Adam deserves to be mentioned in length. Perhaps I'll tell some more stories as the days go by and I have more time.

Blessing and peace to all my readers; we appreciate you!

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.