Monday, August 31, 2009

I have a friend who is walking a similar road as me in that we are both battling this brain tumor in our children. She once used a word to describe the emotional state we sometimes find ourselves in. Emotionally fragile. Tonight that is what I think would describe me. One thing might be enough to send me over the edge.

My brain is tired. My body is tired. My heart is tired.

When I am tired, I am weak. And when I am weak I find myself to be very vulnerable to the overwhelming flaming arrows of the enemy. So desperate I am tonight to find shelter and refuge under the wings of the Almighty.

So desperate I am to somehow separate the circumstances and emotions from what I know is true about my Lord. Otherwise those arms that I need so badly to hold me right now will become ones that I despise and run from.

It is these kinds of nights when I find myself crying along with my daughter as she struggles with her homework and then cries as she tells me how she is struggling in school. I am angry that I feel that in this area my ability to meet their needs at their pace has been taken from me. And my emotions prevent me from being able to rightly encourage her. Instead I just cry and hate how I feel. Hate how much it makes me feel so angry at the people who didn't support my choice to homeschool last year and who never offered to help. People who now sing the praise of school but they aren't the ones stuggling through the pain of each day. Makes me crazy...these stupid emotions.

Same kind of angry sadness that overtakes me at the end of this several day battle of trying to take care of Jonathan and to figure out what is wrong with him. The exhaustion of fighting with each doctor, the trying to explain what they are missing, the watching every minute of the symptoms that no one else can see. The frustration of saying one thing and then being proven wrong but his appearance only to see the symptoms return when we are once again on our way home. The sadness of realizing that really there may not be an answer...that some kids just stay sick. Some kids just leave the hospital and never get better. Then I get angry at others "suggestions" and "comparisons"- its well intentioned but honestly I could do without.

Oh how I wish right now that I could take my kids and run to some deserted island and for just a little while just sit with them, hold them, play with them, and watch the sun set as the waves crash on the shore and be still in the presence of God. Just for a short time away from the pain and chaos. Just a little while to heal and rest.

But for now I am going to make some coffee, spend some time with Jesus, and do something for me.

*By the way, the consensus on Jon is that he has an infection...still unknown and untreated at this time. We are waiting on the EEG results..that in itself was an unpleasant experience but will have to wait for another day. If they come back showing something... I will have words to say to certain doctors. We go back to the doctor on Thursday. So until then I am going to pretend that this was all just a bad dream!
Nothing bugs me more than well intentioned doctors who announce, " You are looking good!" Why does he look good? Because he is sitting up and not laying in bed lethargic and jerking. Because he talks to you, smiles, or maybe even sings you a song. In all fairness to them, they don't really know him. They don't know that this is the child who was singing praise songs while he was in essence dying seven years ago before we knew what was wrong. This is the child who laughs in the face of death, endures pain with gladness, sings the song in his heart despite the way his body feels. He may have been in incredible pain or feeling so awful before you walked in the room but the moment you came into his presence life became all about blessing you.

I want to shake them all sometimes and say Don't be fooled. Because when you are fooled I am left to play the dr. I am the one who watches him unable to stay awake, to cry because he is in pain. I am the one pouring formula and pain meds down his g tube because he is too nauseated to eat. I am the one who knows something is wrong and yet can't convince you otherwise.

I wish sometimes that doctors had to come home with you and live with you for a period of time. That they had to sit at the bedside of the child who is fighting some nasty disease or illness in the late hours of the night. I wish they could see and remember the child they are treating so that they would not be fooled.

That said, today, I know that I have a great team of doctors fighting for my child. They are trying to figure out what is wrong. I think that they believe me even when they don't see what I am talking about. The day that they stop listening to me is the day that I will no longer trust them. Its the day that I find new doctors.

Jon is in MRI right now. I really don't think they will find anything new or different. I hope that they don't. But I am thankful that they are checking. In a little while we will go back upstairs and see the doctor. Then go back down to do an EEG to see if there are seizures going on. Honestly that would be the explanation that makes the most sense. But we will see. I am just going to keep praying and keep fighting until I feel the Lord tells me otherwise. I need peace.

The hardest thing right now is the thought that this may just be a new normal. That his brain is just not able to function and cope the way that it should. That maybe it is beginning to deteriorate. I don't like this thought. I am not ready to just give up. I have to keep fighting for now.

I will post an update as soon as I know something. Thanks for walking this path with us.
MRI scheduled for noon. EEG at 4pm. I am praying there will be some answers. He is pretty sick this morning. Keep praying.
Just finished sending emails to 4 doctors. Someone in this country has to have some ideas for what is going on with Mr. Jonathan!!!! Praying for some answers tomorrow. Wishing I was just imagining all that is happening. I appreciate all the people who are praying for us and with us and for all of you who have come alongside us and offered to help in any way we need. YOu are incredible blessings!!! I will update more as I know more. Good Night.

Sunday, August 30, 2009

I guess I should update this and not leave everyone hanging. We came home Friday night. We were feeling like there was no point in staying in the hospital if there was nothing they could or would do to diagnose the problem. Jon is still not well. Yesterday, he slept for the entire day. He was awake for only 4 hours. This morning we went to church and he slept during the whole service. His body keeps jerking and shaking. Even when he is awake he has moments where he seems back to his self. But then he goes back to being groggy, in pain or just plain out of it.
I am going to call Monday morning and update the doctors and see where we go from here. I honestly have no idea what to do or what is going on but I am going to do my best to bring all the specialists together and go from there.
Shawn is going to be Oklahoma this week so it could be an extra challenging week if I end up in Denver every day. So I am praying for peace, wisdom, and that my heart will be fully surrendered to the Lord. It is a battle to remain fixed upon the Lord, especially when I am getting tired and frustrated. Thank you for your continued prayers and encouragement. It is through the love of friends like each of you that we are strengthened for what lies ahead.

Friday, August 28, 2009

I am so incredibly frustrated! The neuro-oncologist came back and saw Jon at the same time that the resident on the floor came in. The resident was asking if I was comfortable to go to home. I was trying to explain why I was frustrated and not sure what to do.The resident was telling me how neurology didn't think it was seizures and how they think he has this movement before. Which is not true. They said that they think it could be a different medicine. Honestly, I think they just don't want to be bothered by coming to see him. The neuro-onc came in and said he really thinks its just an illness. But he doesn't know what it is that is wrong. He wanted me to know that I could decide what I was happy about and not to feel pressured from anyone. I asked him what he would do if it was his child...he said if it was his wife she would leave in 3 seconds because she does not trust doctors and hates them. He said if it was him he would stay. But that I should do what I was happy about. I asked him if he honestly thought I could take care of him at home and he said well that is complicating because I have a small tribe at home. I told him that my small tribe needs me at home if he really didn't think he needed to be here.

I don't know what to do. He said that he promised if I were to go home that they would call Monday and check on him and see him monday and do more tests on monday if it is still going on. I hate this part of being his mom! I hate taking the risk. I hate that things are so complicating that no one knows what to do. I am going to wait for Shawn and our friend to get here and pray with them about it and then make a decision.

Please pray for wisdom in this decision.
For those who are not on facebook and may not know : Jonathan was admitted to the hospital yesterday afternoon. On Sunday afternoon I picked him up from respite care and he was acting strange. Kind of out of and very mellow. On Monday he continued to be lethargic, spacey, and generally not feeling well. He was complaining of back pain and his head was tilted the right most of the day. I thought it would be related to a sinus infection. So I took him to see the pediatrician and she was unsure of what to do. She gave him antibiotics to try to keep him from getting worse and encouraged me to wait to see the oncology team.

On Wednesday he seemed to be a little better. His color was better and his energy improved. I thought maybe it was getting better and I woudn't need to call the team for their input.

On Thursday morning Jon slept in until 10am. When he came downstairs he was shaking like he was shivering. He said I am cold. So I put a sweatshirt on him and didn't think much else about it. Shortly after he woke up though I noticed that Jon was pretty pale in color, almost gray. Certainly not feeling well. He came and sat with me on the couch and we took his last scantron test for school. As we were sitting there his arms and legs and shoulders start jerking around. It was similar to the way our legs jerk when you are in a deep sleep. His lip was still shaking and quivering and twitching. I immediatly called Denver and told them I was on my way.

I thought maybe we were just having seizure activity. And I wasn't about to have a seizure and not be near the hospital. I was trying to convince myself though that I wasn't crazy and wasn't just seeing things. You would think I would learn to stop second guessing myself. By the time we got to the hospital he was dizzy and crying of intense chest pain. Odd pain for him. I had to put him a wheelchair because he was so dizzy and his legs were jerking a lot.

The normal happy talkative Jonathan who usually greets people with such enthusiasm was barely talking. He was falling asleep. His eyes were twitching and eyelids shutting involunatarily. The doctor came in and checked his hands. He said his color was awful and that he was not well. Intially he did not think it was anything neurological. He said he needed to be admitted because he was unwell with an unknown cause. They did blood work, started an IV with bolus of fluid, IV cortef, and IV antibiotics. Although there is no obvious signs of infection, we have been continuing with IV antibiotics and the stress dose of cortef.

This morning they thought his color was improved and energy level was increased. So they were talking about maybe letting us go home. The main concern was the shaking/jerky movements that are still constant. After they talked to the psychiatrist, the docs thought it might be tardive dyskinesia which is caused by taking anti-psychotic medications. So the psychiatrist suggested that they give him cogenten to see if it would stop the movements. If it did then it would be diagnositc of tardive dyskinesia. So the attending drs ordered the med. In the meantime, Jon was fooling everyone with his charming personality and incredible ability to act well when he is not. So the attending was convinced he was so much better.

Jon was sitting with me on the bed doing school work when the attending came in. He said it appeared he was better... I tried to warn him that he was actually in the process of crashing again. But...I don't think he listened. I told him his throat was hurting and he was getting groggy again. After the doc left I talked to my friend who prayed for the Lord to reveal whether there was something really wrong and that he would allow those who know Jon to be involved. Not even minutes later, the nurse practitioner who usually takes care of us came in. I was so relieved. She watched what was happening. And saw how now 10 minutes after the other doctor left Jon had crashed. He was in bed, unable to keep his eyes open, unable to have a conversation, and very lethargic. He was shaking like crazy. She said she really thinks its neurological. So she went to talk to the neuro-oncologist.

Shortly after she left the psychiatrist came to see Jon. He checked him out and said that it is not the medicine causing this problem. He doesn't have tardive dyskinesia. So he went to talk to the team to figure out what the plan is and what is going on. A few minutes later the social worker came in to check on him. While she was in the room the nurse came back with the congenten. I told her not to give it to him. Last thing we need is to give him some med he doesn't need!

A few minutes ago the Nurse Practitioner called and told me that the neuro-oncologist suggested we go home and come back next week for and MRI and MRA and other tests. He agreed that it could be neurological because of the way his mouth droops when he talks. The inpatient team had not gotten the memo that we were not treating tardive dyskinesia so they were still recommending congenten. I told her the psychiatrist said that was not what was wrong. So she asked me what I wanted to do...did I feel safer in the hospital? Of course, because we don't know what is wrong. How do I know I am not going to take him home and have his head hemorage or something. I asked her what she would do and she said she would stay here. She said she would let them know.

So we really still have no idea what is going on with the boy. All I know is that there is something wrong. Please pray that the Lord will give the doctors supernatural wisdom. Pray that he will give me the ability and confidence to know when to trust them and when to question them. We need to know what is wrong so we can fix it!!!!

Thanks friends for walking through this with us!
Today, as I sit in the hospital with Jon waiting to figure out what is going on with him, I read a verse during my quiet time that struck me. It called out my name, saying this one is for you. At first I was just simply agreeing with the verse until I reread my last blog entry. I had been pleading with the Lord to set me free from fear. And now this verse means so much more: "In my anguish I cried to the Lord and he answered by setting me free." Psalm 118:5

He has answered by setting me free. And little things make me laugh as I feel him prodding me along to live in this freedom. As I made a cup of coffee this morning in this gourmet contraption I sensed freedom. Do you know how many hours I have spent in this hospital in the past with no coffee simply because I was afraid of the machine and afraid to ask for help? Silly I know. Oh how much more did I enjoy my coffee this morning.

See these are those crippling things that I seem to struggle most with. And little by little they spill over into the bigger more important things in life. Thats why I must deal with fear head on even in these areas. This morning I could sense the Lord's delight as he stretches me further and further into dependence on him.

One book in particular has been instrumental to me in this process of dealing with fear. I think this is the fourth time I have read this book. Each time I have been struggling with a different area. The book is Loving God With All Your Mind by Elizabeth George. The main premise of the book is that we are to think on truth. If we think on only what is true then we will be loving the Lord with our mind and be guarding our minds and hearts from needless worry and conflict.

As I read through the book, I am going to try and journal through it here. If you have never read this book, you really really have to! I think you will be truly blessed by it!

Monday, August 24, 2009

Fear. Such a simple word with far-reaching consequences. Fear is so natural. So sudden. And so hard to control. Fear can be paralyzing, suffocating, and can literally bring death. It takes on many forms and strikes each of us in different ways. Regardless of how little or silly the fear may be, when it strikes it is debilitating.

Fear came knocking on my door last night. In all reality, its been knocking for a long time. And I think I may have let more than one foot in the door. And then I realized that what I thought would be a short visit in my heart had become a little more than that. Fear had moved in. It took up residence in my heart. Fear's baggage was beginning to squeeze the life out of me. Thankfully, the Lord was already beginning to shed his light on my heart and the need to kick fear out.

Unfortunately, fear was not to willing to leave. In fact, last night, fear along with his buddy oppression tried really hard to convince me that possession was nine tenths of the law and refused to leave. They tried so hard to enslave me and hold me prisoner. But then that light of truth from my master began to shine through and set me free.

I wish I could say that in an instant my heart was freed and I could breathe again. It is only now hours and hours later that I am beginning to breathe again. My heart was seized by fear. Paralyzed. Life was being sucked out and I was panicking. I asked the Lord why after battling all day through scripture and prayer the fear still was there. Shouldn't it just go away? Shouldn't the Lord just remove it? I asked him to...why didn't he? Then I realized that if he did I would soon find myself right back here. Instead, the Lord is teaching me how to take him at his word, how to obey, and to choose to believe truth. So I think this battle for my heart may continue for a little while. But honestly, I don't want it any other way. When this battle is over, I expect to stand in victory...fully confident in my Lord. No longer afraid. I have asked him to make me bold and courageous. I think I may have to walk through the battlefield to gain these character qualities. Some things are worth fighting for, don't you think?

This morning, after the terror of the night, I began to really diligently seek the Lord for his perspective on all these things. The night had been full of nightmares and a feeling of oppression had filled the house. I desperately wanted to get up, turn on all the lights, and spend time reading the word. But I honestly was too afraid to even get up out of bed. Seriously, it was that paralyzing. The puppy was crying at 2am the exact time that the worst nightmare ended and then Mya started crying. I made Shawn take the puppy outside.. there was no way I could go out. The next few hours were spent praying, asking the Lord why there was so much fear, begging him to take it away, trying to understand the dream, praying for protection, peace for each of my precious family, friends.

Gently, the Lord revealed to me some of the underlying reasons for my fear. Through the vivid nightmare, I realized that I had allowed certain thoughts, fears, memories, circumstances past and present to take me captive. I was bound in the dream and facing certain death. In the nightmare I was not able to call out for help. I realized that I have some deep trust issues. And that there are certain issues that I don't trust the Lord in at all. Its hard not to be afraid, if you can't trust the one who promises to protect you. He also showed me that these fears were holding me back from what He has planned for me. There is so much he wants me to experience and fear is preventing me.

This morning in my quiet time I searched through the bible for the Lord's truth about fear and how to conquer it. I am going to share some of these here tonight. As I process this in the coming days I will share more on how the Lord ministers to my heart. Please, friends, please pray for me in this area... I am desperate to be set free. I am desperate for the Lord to replace fear with a supernatural courage. I think it is going to be a tough fight...I need you to battle with me.

God's truth about Fear:

You must not fear them for the Lord your God himself fights for you. Deuteronomy 3:22

Be strong and of good courage, do not fear or be afraid of them, for the Lord your God, he is the one who goes with you. He will not leave you nor forsake you. Deuteronomy 31:6

I will fear no evil, for you are with me. Psalm 23:4

I sought the Lord and he heard me and delivered me from all my fears. Psalm 34:4

God is our refuge and strength, a very present help in trouble, therefore we will not fear. Psalm 46:1-2

The Lord is on my side, I will not fear. What can man do to me? Psalm 118:6

Whoever listens to me will dwell in safety, and will be secure without fear of evil. Proverbs 1:33

The fear of man brings a snare, but whoever trusts in the Lord shall be safe. Proverbs 29:25

Strengthen the weak hands and make firm the feeble knees. Say to those who are fearful hearted, "Be strong and do not fear!" Behold, your God will come with vengeance, with the recompense of God, he will come and save you! Isaiah 33:3-5

Fear not, for I am with you. Be not dismayed for I am your God. I will strengthen you, yes, I will help you. I will uphold you with my righteous right hand. Isaiah 41:10

For I the Lord your God, will hold your right hand, saying to you Fear not, I will help you. Isaiah 41:13

Do not fear. Do not be afraid. Isaiah 44:8

Do not fear, for you will not be ashamed neither be disgraced, for you will not be put to shame for you will forget the shame of your youth. Isaiah 54:4

O man, greatly beloved, fear not. Peace be to you, be strong, yes, be strong! Daniel 10:19

According to the word I covenanted with you when you came out of Egypt, my spirit remains among you, do not fear! Haggai 2:5

He said to them why are you fearful, o you of little faith? Then he arose and rebuked the winds and the sea and there was a great calm. Matt 8:26

To grant us that we being delivered from the hand of our enemies might serve him without fear, in holiness and righteousness before him all the days of our lives. Luke 1:73-75

Do not fear, little flock, for it is your Father's good pleasure to give you the kingdom. Luke 12:32

For you did not receive the spirit of bondage again to fear but you received the Spirit of adoption by whom we cry out, Abba, Father. Romans 8:15

For God has not given us a spirit of fear but of power and of love and of a sound mind. 2 Timothy 1:7

So we may boldly say The Lord is my helper, I will not fear. What can man do to me? Hebrews 13:6

There is no fear in love, but perfect love casts out fear, because fear involves torment. He who fears has not been made perfect in love. 1 John 4:18

Do not fear any of those things you are about to suffer. Rev.2:10

Do not be afraid, stand still and see the salvation of the Lord, which he will accomplish for you today. Exodus 14:13

Have I not commanded you? be strong and of good courage. Do not be afraid, not be dismayed for the Lord your God is with you wherever you go. Joshua 1:9

Whenever I am afraid, I will trust in you. Psalm 56:3

You shall not be afraid of the terror by night... Psalm 91:5

He will not be afraid of evil tidings, his heart is steadfast, trusting in the Lord. Ps 112:7

When you lie down, you will not be afraid. Yes you will lie down and your sleep will be sweet. Proverbs 3:24

Do not be afraid of sudden terror, nor of trouble... Proverbs 3:25

Behold God is my salvation, I will trust and not be afraid. For Yah, the Lord, is my strength and song. He also has become my salvation. Isaiah 12:2

Peace I leave with you. My peace I give to you, not peace as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid. John 14:27

Thursday, August 20, 2009

Ok, I admit it I am a big chicken! I am also so very weak when it comes to certain things...fear is paralyzing for me. There are so many things that I miss out on just because I am afraid. I hate this. I really do. It would be one thing if it was over some huge thing...but we are talking little things that make me feel like I can't function or breathe. So when my child is freaking out over one of those little things I totally relate. My heart breaks for him. I get weak willed and find myself too quick to give in or to rescue...only problem is that my anxiety over the situation prevents me from even doing that. Its quite the problem, I must admit.

Add to that fear, all of the guilt, feelings of failure, worry, frustration etc and its a deadly combination. Prone to slide downhill pretty fast. I have got to get true perspective and get it fast or I am doomed. So, here I am...tonight feeling actually pretty good. Why? because I didn't give into fear. I didn't get angry. I didnt add to the massive meltdowns taking place in my home. Thank God that he whispered to me that I needed to leave. Thank God that he gave my husband the strength and patience he needed to deal with everything in my absence. And thank God for starbucks and friends that help add to the perspective I needed. And thank God for the many people who immediately went to their knees for us.

I will go into detail more on a later post about these silly fears. But just wanted you all to know that we are ok. My weird bout of throwing up yesterday evidently was more than some fluke thing...Brittney came home early from school after throwing up. Shawn is not feeling well. I don't know how the rest will be tomorrow. By the time we got home today, the kids were all tired and hungry and Britt was crying. The stress level was high. Add to that Jason losing his homework and Josh losing his toy from the treasure box. Jason completely freaked out. He decided he just won't be going to school tomorrow and locked himself in the bathroom. He was crying, screaming, and frantic. That one went from bad to worse. Then Josh started crying over his toy. And in the middle of all of this, Jon told me he wanted one kind of cereal, changed his mind after I poured and then proceeded into melt down mode when I said he couldn't have the other cereal. I gave in, poured him the cereal he wanted but it was too late...he was biting himself, crying about how mean we were, etc.

It was too much for me to handle. So I left. See all I could see was visions of Jason from school years past. SO full of anxiety and fear that he would become terror stricken and refuse to get on the bus. refuse to get in the car. refuse to stay in the car ( he tried to open the door once while we were driving.)having to pry him off of me in the school office, half dressed and screaming and crying. And here we were not even a full week of school and the anxiety was returning over a lost homework sheet. I can't handle that right now. Especially when I didn't want them to go to school in the first place. So I had to leave. and trust that Shawn could handle it. And he did.

That's the short of the story...more another day. Just want to thank you all for continuing to pray us through the little things that feel so huge.

Friday, August 14, 2009

Lunch for the second day of school! Not the prettiest presentation or photo but fun anyway, right? In the right hand corner are three mini turkey tortilla roll ups. In the muffin cup is half of an oatmeal cream pie. Next to that are three strawberry mice eating a cheese wedge. String cheese separates the fruit from the main "entree", which is uncooked ramen noodles for a spider web accompanied by three spiders. The spiders are made from rice balls (they taste like broccoli cheese casserole since they are made with broccoli puree and sweet potato puree. So if they eat them they will get veggies too!) and have chow mein noodles for legs. I included a small container of ranch dressing to dip the spiders and roll ups in. I hope that they will eat it and have as much fun devouring it as I did making it.

Thursday, August 13, 2009

First Day of School!

Monday, August 10, 2009

Jason had his appointment with the endocrinologist today. He was so worried about having to have blood work done but he did such a great job. I love this doctor...he has such compassion, he listens, he takes notes, and he remembers. He sees Jonathan as well and genuinely cares about him and our family.

So here is where we stand today: the bone age shows a delay of about a year and half which is good for him. It puts time on your side to be able to catch up. There is the possibility that he simply is going to be a late bloomer. But the doctor said the findings show reason to pursue testing to figure out what is going on. Jason has stayed at the 10th percentile for a long while in height. But the chart shows that he has dropped down into the 3rd percentile. The doctor said that normally in just late bloomers they stay on the same percentile. And when you drop below more than one line you start to wonder what is making the growth abnormal.

They did many different blood tests including thyroid function to rule out any possible causes. If these all come back ok than we will do a 4 hour growth hormone test. There are so many things that affect growth so we just start here and keep going until we figure out the cause. It takes about 10 days to get the test results back so we will know more then.

Been here...Done this...and so thankful to know that the cause is not a tumor in his brain. The rest we can deal with.

Thanks again for all your prayers.

Friday, August 07, 2009

My favorite scripture from Isaiah:

(needing to refresh my heart with God's word tonight)

"Stop doing wrong,learn to do right! Seek justice, encourage the oppressed. Defend the cause of the fatherless, plead the case of the widow. Come now, let us reason together, says the Lord. Though your sins are like scarlet, they shall be as white as snow, though they are red as crimson, they shall be like wool. " 1:17-18

" He will teach us his ways, so that we may walk in his paths." 2:3

"Come, O house of Jacob, let us walk in the light of the Lord." 2:5

"Stop trusting in man..." 2:22

"Tell the righteous it will be well with them, for they will enjoy the fruit of their deeds." 3:10

" It will be a shelter and shade from the heat of the day, and a refuge and hiding place from the storm and rain." 4:6

"Then I heard the Lord saying, Whom shall I send? and who will go for us? And I said Lord, here am I. Send me!" 6:8

"If you don't stand firm in your faith, you will not stand at all." 7:9

" Don't call conspiracy everything that these people call conspiracy; do not fear what they fear, and do not dread it. The Lord Almighty is the one you are to regard as holy, he is the one you are to dread. " 8:12-13

" And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." 9:6

" Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord is my strength and my song; he has become my salvation." 12:2

" On this day...he will swallow up death forever. The Sovereign Lord will wipe away the tears from all faces; he will remove the disgrace of his people from all the earth." 25:8

" In that day they will say, Surely this is our God; we trusted him and he saved us. " 25:9

" You will keep him in perfect peace him whose mind is steadfast, because he trusts in you." 26:3

" The path of the righteous is level. O upright one, you make the way of the righteous smooth. Yes, Lord, walking in the way of your laws, we wait for you; your name and your renown are the desire of our hearts. My soul yearns for you in the night; in the morning my spirit longs for you." 26:7-9

" Lord, you establish peace for us, all that we have accomplished you have done for us." 26:12

" In repentance and rest is your salvation. In quietness and trust is your strength, but you would have none of it. " 30:15

"Yet the Lord longs to be gracious to you; he rises to show you compassion. For the Lord is a God of justice. Blessed are all who wait for him!" 30:18

" O people of Zion, who live in Jerusalem, you will weep no more. How gracious he will be when you cry for help! As soon as he hears, he will answer you. " 30:19

" Whether you turn to the right or to the left, your ears will hear a voice behind you, saying This is the way; walk in it." 30:21

" The fruit of righteousness will be peace. The effect of righteousness will be quietness and confidence forever. " 32:17

" O Lord be gracious to us; we long for you. Be our Strength every morning, our salvation in time of distress." 33:2

" Steady the feeble hands, steady the knees that give way; say to those with fearful hearts, Be strong, do not fear, your God will come, he will come with vengeance; with divine retribution he will come to save you. Then the eyes of the blind will be opened and the ears of the deaf be unstopped." 35:3-5

" He tends his flock like a shepherd; He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young." 40:11

" Do you not know? Have you not heard? The Lord is the everlasting God, the creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. " 40:28,29

" So do not fear for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand. " 41:10

" For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear I will help you." 41: 13

" fear not, I have redeemed you, I have summoned you by name, you are mine. When you pass through the the waters, I will be with you, and when you pass through the rivers, they will not sweep over you. When you walk through the fire you will not be burned, the flames will not set you ablaze. For I am the Lord your God the Holy One of Israel, your Savior." 43:1-3

" Since you are precious and honored in my sight and because I love you..." 43:4

" Forget the former things, do not dwell on the past, See I am doing a new thing! Now it springs up, do you not perceive it? " 43:18-19

" I, even I, am he who blots out your transgressions, for my own sake and remembers your sins no more." 43:25

" Remember these things, O Jacob, for you are my servant, O Israel. I have made you, you are my servant: O Israel I will not forget you. I have swept away your offenses like a cloud, your sins like morning mist. Return to me, for I have redeemed you." 44:22

" Turn to me and be saved, all you ends of the earth, for I am God and there is no other." 45:22

" They will say of me " In the Lord alone are righteousness and strength." 45:24

" You whom I have upheld since you were conceived and have carried since your birth. Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you." 46:3-4

" I am the Lord your God who teaches you what is best for you, who directs you in the way you should go." 48:17

" I am honored in the eyes of the Lord and my God has been my strength." 49:5

" For the Lord comforts his people and will have compassion on his afflicted ones." 49:13

" Can a mother forgot the baby at her breast, and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands." 49:15-16

" Because the Sovereign Lord helps me I will not be disgraced. Therefore have I set my face like flint and I know I will not be put to shame. " 50:7

" He who vindicates me is near. Who then will bring charges against me? Let us face each other! Who is my accuser? Let him confront me. It is the Sovereign Lord who helps me. Who is he that will condemn me? They will all wear out like a garment; the moths with eat them up." 50:8-9

" You will forget the shame of your youth and remember no more the reproach of your widowhood. For your maker is your husband- the Lord Almighty is his name!" 54:4-5

"For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord." 55:8

" You will be a crown of splendor in the Lord's hand, a royal diadem in the hand of your God." 62:3

Thursday, August 06, 2009

It figures that I would come home with great news to share and then have my bubble of excitement burst. Isn't that how it works? Jon's appointment went really well. His blood counts are still on the border of ok... his platelets are low but they have been lower. His white count is low so that bothers me a little...not much room for them to fall next week. This chemo has a "surprise" drop 2-3 weeks out from treatment and this is where we have started to not recover so quickly. I am worried about the kids going to school and bring home all those fresh germs. Hand Sanitizer will soon be greeting them as soon as they arrive home!

The psych appt went really well. This was Shawn's first time meeting him. Its funny because I don't think the dr honestly remembers what he says from week to week. This is scary too..good thing I am on top of things and that we have a great team of drs to keep up with everything. He didn't even ask why we chose not to put him in the program. He did talk about the program and shared with me how some of the structure of the classroom is and paralleled it to how I am starting to structure things. That made me happy...God does know after all what is needed and lead me to exactly the right information. So for now we press on with what we are doing and wait for a few more weeks before we mess with any of the other meds.

In two weeks we go back to oncology and have our next MRI. So until then we wait and as the psych dr said we celebrate this small victory before we move on.

Well, my celebrating lasted just a few short hours. We picked the kids up from Mamaw's and went by the store really fast. Josh was in a grumpy mood and was provoking Jon. Jon was tired from the trip and not feeling so well so he was easily agitated. When we arrived home the bomb exploded and left me in tears...Jon lost it because his toothbrush is missing. He called the toothbrush every awful name he knows and was coming unglued. I attempted to cue him to use the cooling down strategies and it didn't work. He escalated to a verbal rage. I quickly attempted to give him his evening meds to help calm him down. Usually I can easily get the meds in but this time he was trying to cough so the meds and his stomach contents would come back up and out of the tube and of course in my face. When that didn't work, while I was waiting for Shawn to bring me the syringe plunger so I could force the meds through Jon spit in my face. You can only imagine how it went from there... I am going to kill my mom. I hate her. I hate this mom. I hate this family.

I just left him in his room to scream horrible awful things. In the meantime the rest of my kids were reacting and having a hard time getting to bed. Josh was frustrated trying to express what he needed to share. No one was obeying. The stress level went through the rough. Shawn was frustrated and getting angry. And I stood there and with tears pouring felt an overwhelming need to run. Then the assaults started on my mind and my heart and the tears poured and all I could do was cry out for my Lord, the one who brings truth and comforts my aching heart.

These are those times when my world feels so incredible lonely. despite the amount of people who are there ready to support and help. It just hurts too much. Its paralyzing and in that moment there is really nothing any one can do but pray for me. pray for my family. Its a desperate feeling to all of sudden by spiraling down to the pit of despair and be screaming out for truth to rescue you.

In these moments though is when I know my Jesus more intimately than I have ever known him. These are the times when he whispers his love in my ear. When he takes the sword from my hand and tells me to stop fighting as he wraps his arms around me and holds me close. There with my head rested upon his chest, I am hidden from all the attacks. Sheltered from the lies. And his heart begins to beat truth back into my heart. His words tell me its ok. They tell me that he has a purpose. He tells me that I am more than ok. That he made me, he chose me, and he loves me. Jesus whispers the words that I long to hear...the words that free the secret desires and the unspoken longings. The words that tell me I am right where he wants me to be. The words that remind me that it is He, the great and mighty God, who is carrying me tonight in his strong and capable arms. My name is etched upon his hands. He can't forget me. He can't reject me. He can't leave me here to face this all alone.

Its times like this when I am at my weakest and am hurting the most that I know more than ever that I am truly his child.

Wednesday, August 05, 2009

Thank you so much for all of your prayers for our family. For the moment, calm has returned and I hope that it will stick around for a little while. The kids start school next week. Jason, Josh, and Britt will be going to a brand new charter school. I have mixed feelings but I am sure, despite my personal sadness, that this is what is best for them. They need a life outside this house and a place of respite for themselves from this nasty disease. I know they will enjoy making new friends. I worry about many things educationally because they all three are a little behind, especially in reading and writing. This is because of the dyslexia. I think there is just a part of me that isn't looking forward to the battle that might be on the horizon as I advocate for them.

Britt was in tears of her spelling the other day. She is so worried that she will get an F. I told her we don't care as long she tries her best...but her perfection requires perfect scores. I think we may be in for a rough year. There is such a fine line of balance that lies in enabling them to deal with the real world and wanting to rescue from the pain of the cruel world that we live in.

So yes, school is going to bring relief and hours of quiet but it will bring new challenges, new time commitments, and even more on my already full plate. And just wait until the snow starts falling and I have to drive them to school...that's a story for another day...I just keep telling myself that it will be ok. I have to continually guard my mind against viewing them going to school as a sign of failure on my part or something stolen from me. I pray the Lord keeps reminding me that this is best for them.

On the other side, I am excited about having time just to spend with Jonathan and Mya. Jonathan made a lot of progress in school last year and I am hopeful that he will continue this year. Maybe even more since he will have my full attention. He is so eager to get started. I plan on having him go to Zach's Place or Mamaw's house once a week so I can have a day with just Mya or just by myself. I am learning how vital that is for us to survive.

Tomorrow we go to see the psychiatrist with Jonathan. I am taking Shawn with me as I fear this may not be the best appointment. I don't want this dr. to think that I am a difficult parent...just want him to understand that we have to do what's best for Jonathan and the entire family. As we have prayed about it, I feel as though the Lord is leading against the day treatment program. Instead, I feel as though he has shown me some other things to do instead. Some of this is scary for me because it may not work and I don't want to be wrong. And I don't want to say...God told me to do this and then have it fail...and give God a bad name. Does that make sense? Talk about having to grow in faith!!!

Basically, my plan is to saturate Jonathan in prayer and God's word first. I believe that God can change and minister to him despite his illness. I know when I spend time with the Lord my perspective is different, my ability to cope is greater, I am just changed by his presence. He is that powerful that just time with him changes us. I don't think this is the cure totally without any other changes...just feel led to trust God in a deeper way than I have in the past. This has been one of those areas that I for some strange reason really didn't believe that God's word remained true in . In addition to this we are changing some of the ways we parent and respond to his meltdowns. This involves teaching the entire family how to use cues to prevent episodes. Involves alot more attention and intervention on my part but worth it if it brings peace to our house. I am still researching how this all will work but already there is a change in my home. I think its because we are proactive and have quit being despondent.

Really no one knows what to do with Jonathan. But I am determined to not give up. I will keep trying anything and will keep seeking the Lord. He knows the answer!

We just finished the fourth cycle of chemo. 4 more to go! So far so good...but we will see how he is in a week or two when his counts start dropping. Please pray that as school starts that God will protect my kids from illness. Jonathan needs to stay well.

I will update tomorrow after the appointment.