Feb 28, 2008

More on Ethan ...

God is amazing! Just as Dr. Anthony said the very next morning after our visit with him, he worked out and discussed Ethan's MRI with Dr. Bradley. Dr. Anthony's office called us a few days later and gave us the contact information for Dr. Bradley and said we had an appointment two weeks later. He told me that the neurosurgeon would not recommend surgery right away because of the location of the tumor and wanted to see if medicine could control the seizures. He said of course, he will be able to tell in detail what the next step will be for Ethan when you go to your appointment.

Two weeks passed and Ethan was still having seizures and had started falling out of chairs at school. I was terrified. Ethan's school had just built a new facility and all the parents were excited for the children to be in a brand new building .. and so were we until we found the school was two stories and Ethan might have to climb stairs. Our fears were calmed after we met with the school administrator and it was decided that Ethan would only be allowed upstairs with a hallway monitor. In fact, Ethan's first grade teacher assigned another little boy to accompany him when he went to restroom and to help him with his schoolwork to make sure they could get help to him if he had a seizure. The children were wonderful towards Ethan and wanted to help him all the time and never left him alone.

We finally had our appointment with the neurosurgeon who has an "Atypical" type of personality. He is very confident and "matter of fact" and provided more medical detail about Ethan's tumor than I was able to comprehend or understand. One of my friends said, well Jai, you would rather have his neurologist be the one who has bedside manner and the surgeon ... well let him have his confidence .. he NEEDS to be sure of himself, if he is gonna perform operations like these. You know, she had a point. I wouldn't have it any other way.

He told us if the tumor had been located closer to the top part of Ethan's head, he would take it out immediately. BUT. BUT. Ethan's tumor was located deep deep inside his brain and under tissue that he wasn't sure he could reach or even want to try. He took a plastic rendention of a brain, took it apart an explained where the tumor was and why it was so difficult to get out or even test to see if it was cancerous. He said if Ethan had the surgery there would be problems physically and mentally after the surgery. He wanted to see what the medicine would do for Ethan and suggested Ethan had MRI every 6 months to make sure it was not growing. IF the tumor started to grow or if Ethan's seizures became unbearable (what does that mean), then he would go in and try to remove as much of the tumor as possible with NO guarantees. He said it was about Ethan's quality of life. He would rather have him seizing, than put him in a wheelchair for life because of the surgery.

We left the meeting with a lot of information and a lot of sadness. Why Ethan, what did he do? What did we do? Why are children sick? How could this happen? Yesterday, he was playing basketball and today he is lying on the couch exhausted from the 3 seizures he had today. We had a pity party, BUT we did not stay there long.

We did not know the road we are about to travel. We did not know how much strength we had. We did not know if Ethan would be healed on this side of heaven. We did not know where the finances would come from if he had the surgery. We did not know our marriage would be tested. We did not know Ethan would decline in school. We did not know we would lose some friendships. We did not know Ethan would gain weight. We did not know how much research it would take to get some answers. We did not know you CAN fight with your insurance company and WIN. We did not know family and friends would grow in their relationship with God. We did not know I would eventually be an at home mom. We did not know we would have 2 more boys who love Ethan to death. We did not know peace would eventually come over us. We did not know our marriage would be stronger than ever. We did not know 12 years ago when we got married, God's plan for our life ... but what we DID KNOW ....?

God is JEHOVAH, He IS our Lord
God is JEHOVAH - JIREH, Our Lord, our provider
God is JEHOVAH - ROPHE, Our Lord who heals
God is JEHOVAH - SHALOM, Our Lord, our peace
God is JEHOVAH - ROHI, Our Lord, Our shepherd
God is El-Shaddai, God Almighty

He HAS shown himself strong in Ethan's life! In January 2003, D and I adopted Jeremiah 29:11 to stand on for the year, not knowing what was to come ... "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. "

He did not leave us and has a plan that is carrying itself out right now .... we just needed to let go and let HIM use us ......

I only have a few more installments about Ethan. I appreciate your patience ... I am being blessed all over again and pray you are as well.

Feb 27, 2008

Ethan - Part V ... is gonna take a little longer ..

Sorry, I have been away sooo long .. I have three words for you .. We've been sick! I have had just enough energy to check emails , read a few blogs and warm up Theraflu and chicken noodle soup.

We are praying for healthy children, healthy mommy & daddy and a better weekend.

Peace out AND within this house ... I hope ...

Feb 21, 2008

Ethan - Part IV

Two weeks after Denham went to be with the Lord, Ethan's first MRI was scheduled. The hospital that was doing the MRI was 45 minutes away from home, so we had a long time to ponder what was about to happen. When I told my dad Ethan would have to have this MRI, he explained what happened when he had them so many times before, but we soon learned a child's MRI is not exactly the same.

We checked into the hopsital and were immediately sent to the Radiology Department. I had to fill out a ton of medical history forms. It never occured to me how much I know in my head about Ethan's medical history and could answer every question. D knows what to ask the doctors and I can provide history. (God knew what He was doing when he put us together.)

I turned all the paperwork in and the nurse gave me one more form. Consent for the MRI with all the "what ifs" and "the hospital is not responsible for" and it scared me. Death was mentioned quite a few times and so I asked for a consulation. What can expect from this MRI? The nurse told me we would be working with one of the the best technicians and he would explain everything.

Ethan's name was called and we went back to what to looked like the emergency room ... only quieter and cleaner. Really sterile. (You have to understand I worked with a medical company for 7 years and had seen all the major ERs in my area and most of them leave a lot to be desired) Anyway, they had us get Ethan in a hospital gown and get in the hospital bed while D and I sat on each side of him. A nurse came and applied some gel on the back of Ethan's hands and applied medical tape over the gel so he could not wipe it off. She explained that Ethan would be put to sleep for the procedure and they have would have insert an IV to administer the medicine.

Ethan has always been a curious child and he wanted to know every little detail. The tech came in, greeted us and began to explain to us what the procedure would involve. In the room next to us we could hear screaming from another child who was getting an IV put in. Oh yeah .. now I am really sure we are doing this. The tech explained that Ethan would get the medicine put in the IV and would instantly go to sleep. They needed Ethan to be very still in order to get the pictures they needed and most children do not like the noise the MRI machine makes. Sounds like a VERY bad rock concert. VERY BAD .. beyond heavy metal. I'm just saying.

It turns out of our tech was a DOCTOR, not just a tech, who was young, had great bed side manners and had completed these procedures with children many times before including his own son. He took time with us explaining what would happen and tried to calm our 6 year old Ethan down when he saw that Ethan was getting anxious. Me, I began to sob. Not outloud, but tears were overflowing. The doctor gave me some tissues and tried to calm me down as well. I could not believe that we were sitting in a hospital about to do this AND I kept brushing across a belly that was no longer there. My hormones were all - over - the - map. Poor D, I know he could not figure out what to do ..

Anyway, the got the IV in Ethan's little hands, the doctor did it himself and we were off the radiology area with the machines in them. By now I had a huge migrane headache and needed a very dark room. I stayed in the waiting room while D went in with Ethan. The test lasted for 45 minutes or so and when they opened the door Ethan was knocked out. I had never seen him this limp. They told us it would take us a while before he would wake up so they wheeled us back to the radiology holding area. D described for me what happened and I have never seen that look in his eyes before. He said that when they put the medicine in Ethan's IV, in less than a second Ethan dropped down on the gurney. One minute they were talking and the next minute Ethan was out like a light. Very scary to hear, very scary to see and very scary to think this boy is only 6. While we were waiting for Ethan to wake, a baby was wheeled in the next room and again, I thought, thank you Lord .. I don't think I could do this with a baby.

The nurse came over and said she needed to begin to wake Ethan up and he would be VERY combative and that we needed to brace ourselves. The medicine affects children in different ways. Ethan began to wake up and began to mumble and eventually he lit up when he saw the Dr. Pepper. They use cold drinks or soda to assist in getting the children awake so they can make sure they can swallow properly. Ethan immediately wanted to get up and walk, but he didn't realize he had "drunk legs". He was talking crazy, like a druken soldier and nothing we said made sense to him, all he knew was, he was ready to go. They told us to watch him for the rest of the day and night and that he would not be able to eat until later that evening. I forgot to tell you that he had not eaten since the night before and he was hungry, really hungry and he did not want us to keep telling him he couldn't eat yet. We are also on alert because they said the meds could make Ethan turn blue or he would stop breathing. Not highly likely, but it could happen and of course that is all I needed to hear before we went home.

We signed the release paperwork and waited for the doctor to come back in and tell us what this mass/tumor was. He back in the room to tell us he was sorry, but we would have to wait until we saw Dr. Anthony before we could get the answers we needed. He knew what they scans said, but he just could not tell us. I kept trying to read his face and held on to every word he said looking for answers that were not there.

It was just like they said all the way home. Ethan was trying to unbuckle his seat belt and get out of the car. Thank goodness for childproof door locks. Once we got home, D had to carry him in the house and we both had to watch him like a hawk, because he kept trying to get out of bed .. he still did not understand his sea legs. At one point me and D were literally holding Ethan's legs still because one parent was not enough to hold him down. It was another 2 hours before Ethan could have solid food and of course he chose mac and cheese and mashed potatoes. He did fine for the rest of the evening, but there was no way he could go to school the next day, so I stayed home from work and we stayed in bed ALL DAY ...

We didn't get to see and hear from Dr. Anthony until 2 days later. Another 45 minutes drive to the doctor's office. We thought alot and the drive was silent. We finally got in to see Dr. Anthony and he told us Ethan had a tumor the left temporal lobe of his brain and it was in a very difficult place for removal. Dr. Anthony had seen 2 other children that same year with tumors in the same region on the brain and those two children had already had their tumors removed and were doing well. BUT FOR ETHAN .. the story would not be the same.

The location of the tumor is what worried the doctors. Ethan's tumor was buried deep, deep in his brain and could be attached to brain tissue and from what he could tell, if they tried to remove it, it may render Ethan paralyzed with partial blindness and loss of memory and speech. We just sat there trying to make sure this wasn't a dream or nightmare. Dr. Anthony said he didn't know whether or not the tumor was cancerous and he wasn't even sure they could test the mass because of the location and if you go in test, you might as well go in to take it out and that was something they were not prepared to do.

He gave us the name of our neurosurgeon, Dr. Bradley and told us that we would have to see him soon to discuss Ethan's case. He would make the arrangements for us and let us know when we were to head to see Dr. Bradley. The good news .. they were very good friends and worked out together almost everyday and he would talk to Dr. Bradley the very next morning.

Hebrews 11: 6 says, "But without faith it is impossible to please him: for he that cometh to God must believe that he is, and that he is a rewarder of them that diligently seek him." (King James)

Never before in our lives would God's word begin to reign over us and rain on us in this manner .. as we would begin a new journey with Ethan, but more importantly with our Lord. Hallelujah! Thank you Jesus! Jehovah!

Feb 18, 2008

Ethan and Denham - Part III

My hubby is from Kentucky and we make a trip to see his family every year, twice a year. We were planning to go hang out with his family for the forth of July. We had just found out about Ethan's seizures and we needed a diversion. We needed to laugh, be hugged and laugh some more. The last month had been really hard.

2 days before we were to leave, I was in the washroom and bent over to put some clothes in the dryer. I felt a sharp twinge just below my belly. I grabbed the bottom of my belly and limped to the den and felt the twinge again. I called out to D and he came in and put my feet on a large pillow and asked me what was going on. I didn't feel good. I became really sick to my stomach and got really worried. Ethan always seems to know when his mommy doesn't feel good and came in to rub my back. I called the doctor and after providing more symptoms and feelings, he asked me to come in. Even though I did not feel the best, I thought the doctor would me come in, check me out and send me home and say we could not go on our trip.

Ethan and I got to the hospital, got to the doctor's office and they rushed us into the back. As soon as the doctor finished examining me, I could see the words on his face. He said, it is not good, you have started labor, the sac is about to break and when it does, I will not be able to stop the process. More than likely, you will lose this baby. I took a breath, looked at Ethan and started crying ... HARD. I could not believe what he was telling me. Ethan started crying because I started crying. I asked the doctor if I could call D and have him come to the doctor's office and he said, you need to call him and meet in labor and delivery. You HAVE to check in NOW!

Ethan and I called D and I don't even know what I said. After we spoke with D, Ethan and I went to labor and delivery where I called my sister to come and pick up Ethan. He didn't understand. I wished I had not brought him with me, but I didn't think it was going to be a big deal. I tried to stay composed and it was really, very hard. D worked 20 minutes from the hospital and was there before I knew it and took Ethan out of the room to try and explain what was going on. How do you explain to a 6 year old what all the noise, people, and tubes mommy had running up her arm was? My sister arrived to take Ethan home to my dad's house. D and I said our goodbyes to Ethan who wanted to know why he couldn't stay with us. He cried and cried. My heart ached for him. I wanted him to stay with us, but he didn't need to be there. That night, the doctors said if I could make it through the night, the baby might be okay, but I would have to stay in the hospital for the duration of the pregnancy which meant 19 more weeks and I would have to be transferred to another hospital 30 miles away. We were already 35 miles from home at this hospital. I could NOT imagine what that would have been meant for D and Ethan. Trying to "live" life and see me throughout the week in another city for 19 more weeks. How would that happen? Who would take Ethan to his doctor's appointment, his MRIs, to school. Would D be able to keep his job throughout all of this? What about Ethan?

The next morning around 2am, I went into full labor, delivered Denham and she was gone. I had just heard her heartbeats and only minutes later she was gone ... gone to be with Jesus. D and I got to hold her and spend time with her, but no where near the amount of time we should have spent with her.

Later than morning I was moved to a "regular" room away from the labor and delivery floor, the hospital said because I didn't need to hear the cries of newborn babies and I didn't need the reminder that I wouldn't be taking my precious Denham home.

Ethan spent the night with my dad which he LOVED doing and I didn't want to tear him away, but I needed him to come back and be with me and D. I needed my immediate family. Ethan laid in the hospital bed with me , hugged me all morning long and ate my food. By 10:00am, I was ready to get the heck out of there. So we came home.

We closed all the blinds and covered the windows. We didn't want to see out and didn't want anyone in. Kinda sad when I think of it because Ethan was trapped with his parents who were mourning differently in the same house. His dad not saying much and his mom screaming at the top of her lungs every other minute. Only time could heal the hole in my heart.

Today, Ethan speaks of Denham. He didn't get to see her in the hospital, but likes to look at her picture. Occasionally he will write her a letter or pray for her, but the four years after her death and before his surgery, he would become totally obsessed with her. He talked about her so much at school, his teachers thought that she was still alive and I just never brought her to school with me. At one point, I was spinning my wheels because he didn't understand she wasn't coming back and was asking about her all .. the .. time. Each seizure would chip a little more at his memory and because he was having more seizures, we spent more and more time explaining death and Denham to him. It was a lesson in futility for me. It began to drive me crazy (just being real) and I didn't know what to do. All I could do was pray. Since his surgery, he understands death more. He says he still misses her, but he is not asking questions daily about her anymore. Things have gotten much better, but we all miss her.

After Denham died, Ethan's doctors wanted us to take some time to grieve. Not too much time passed and they scheduled his MRI 2 weeks later. I had heard of MRIs before, but I had never seen one performed, especially not an MRI with a child, any child and especially NOT my child ... Ethan had to be put to sleep to get the answers that were needed to get to the bottom of this mass, tumor, this thing in his head and we didn't like that at all. We were introduced to the "team" of doctors that would help Ethan on this new journey of his life.

D and I were about to begin fighting the battle for Ethan's life.

Feb 15, 2008

Ethan - Part II

By the end of June Ethan began having seizures every other day. We were sent to new doctors who specialize in child neurology.

The first step was to have another EEG at the new hospital. The people were great. I guess they could tell from the looks on our faces that this was the scariest thing we have ever had to do. The technician told us that just as the EEG was done in the ER, they would hook Ethan to a machine that would record his seizures and determine where the seizures were coming from. They would also have to MAKE him have seizures and not wait for him to just have one, because they wanted to get a good reading. This was very hard for me and D because who wants to see your child having a seizure and how many would it take for them to get the information they needed?

The EEG was completed and they tried to compare it to the EEG that was done in the ER, but the software programs did not match, so we learned that our diagnosis would be totally based on the tests the new doctors did. They gave us the test scans and had us go to the new neurologist just around the corner from the hospital. We were so lost and "out of it" that we left our car in the hospital parking lot and walked to the doctor's office. As soon as we opened the door, I stopped in my tracks.

The waiting room was wonderfully decorated with child like paraphenalia, engaging colors on the wall and smiles that hugged you as you walked in the room, BUT I saw 2 babies in car seats. 2 babies .. I didn't know babies would be here. What a pill to swallow. I thought about what we had been through on our short journey and comparing it to these moms and their infants and said ... thank you Lord. Thank you that even though we don't know what is totally wrong at least he is not a baby having seizures and unable to explain what was going on. I said a silent prayer for those babies.

Our names were called and I went to the window and was given a mountain of paperwork to fill out before we could go back. Paperwork - - child having seizures - - parent who's world is spinning out of control --- and you want me to fill out 15 sheets of paper? Ooook. Ethan had some paperwork he needed to fill out as well. He had to color some sheets, write some sentences, and follow the dots and numbers to make a picture. Simple enought, but while he was coloring I noticed he was coloring outside the line. Something he does not do. When he wrote his sentences, his letters were really big.

I finished the paperwork, turned it in, gave them our insurance card and the $20.00 copay and then we were called to the back. They weighed Ethan and measured his height and ushered us into this very white room to wait for the neurologist. It seemed like an eternity. When Dr. Anthony finally came in he spoke to us and immediately said, Ethan, let me shake your hand. Ethan just sat there .. and finally gave him his hand. Dr. Anthony stands as tall and BigBird and has a voice that boomed all over the room. He has GREAT bedside manner. He had Ethan do some motor skills tests, asked him a lot of questions and then let him sit with us.

The next 30 minutes are a blur .. a real blur. What I remember is him saying that tests showed Ethan IS having seizures all the time. Some of them we will be able to see and some of them we will not. The good news is there is a LOT of medication to TRY on Ethan and see which medicine or medicine combination will work best for him. Medicine is not an exact science when it comes to children. Dr. Anthony said it appears that there is a mass that is causing the seizures, but we need to do more tests to determine what kind, how big it is and the location of the mass so we can make plans to take it out if possible. The rest of meeting as I said was and is a blur, but I know D asked a million questions and wrote a lot of information down. (Thank God for putting us together, I was too frazzled to think of much to say)Dr. Anthony gave us a seizure chart so we could record every seizure and log the dispensing of his meds and any unsual bahvior. He gave us 2 sheets for bloodwork to be done before Ethan started the meds and then another sheet to have bloodwork done before our next neurology visit. The meds Ethan took then and takes now can have a negative affect on his liver. Dr. Anthony gave us a new prescription for Ethan and said he would work on scheduling an MRI for Ethan as soon as possible.

The MRI did not happen until the latter part of July, little did we know, MY medical history was about to take a turn for the worse.

Feb 14, 2008

Real Love

1 Corinthians 13 (New International Version)

Copyright © 1973, 1978, 1984 by International Bible Society

1 Corinthians 13

1If I speak in the tongues[a] of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal.
2If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing.
3If I give all I possess to the poor and surrender my body to the flames,[b] but have not love, I gain nothing.
4Love is patient, love is kind. It does not envy, it does not boast, it is not proud.
5It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.
6Love does not delight in evil but rejoices with the truth.
7It always protects, always trusts, always hopes, always perseveres.
8Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away.
9For we know in part and we prophesy in part,
10but when perfection comes, the imperfect disappears.
11When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.
12Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
13And now these three remain: faith, hope and love. But the greatest of these is love.

More on Ethan Friday .. thank you for the kind comments ...

Feb 12, 2008

Ethan's story ...

I don't know how to begin or what exactly I should say ... Holy Spirit help me ...

2003 - We had just moved into our new home, found out we were pregnant and getting ready for the summer. Ethan had just completed his kindergarten year with a 4.0 (Private school) and was invited to be in the talented and gifted program for his first grade year. God created this boy "gifted."

One weekend in June while I was at work, my husband called and said do you notice how Ethan is not completing his tasks lists? Have you seen him stare into the air? Have you called him and he did not answer and is looking you right in the face? I stopped my work and sat down and said, "yes, I have noticed that if I give him a list of things to do, he does one or two things on the list and then starts doing something else. I have also noticed that when I call his name, he does not answer, but I thought he was playing a trick on me. (Something he used to do quite often) Did something happen? "

Yes, my husband said. We went to the grocery store and when we were walking to the car, Ethan stopped dead in his tracks in the middle of the parking lot and when I called his name, screamed his name, he did NOT answer. He was staring into space. When he stopped staring , he said, "dad, why are screaming at me?"

I sat further back in my chair and started crying. I do not know why, I just did. A sadness came over me, because deep in the back of my mind, I knew something was wrong. The rest of the weekend would bringing even more tears.

Sunday while at my sister's church Ethan had 3 more episodes where he would stop doing whatever he was doing and stare into the air. My sister's godmother, who we call "godmother" saw one of his episodes and said, Jai, Ethan is having a seizure. She went on to explain that she had seen this one other time before with one of her students and while everyone else thought he was daydreaming, the child was having seizures. She said Ethan looked just like that little boy. I cried all --- the way --- home. I cried out to the Lord, with NO words, but cries!!!!!

The rest of day brought more of these episodes, but we didn't know what to do. He WASN'T have gran mal seizures, he wasn't falling, he wasn't stuttering, none of that .. he was staring into the air, but he kept on doing it. We called the pediatrician who unfortunately was NO HELP. I am shocked and dismayed. My doctor was NO HELP. We told them what we thought was happening and they suggested we go to the ER because they didn't deal with seizures. OOOOOkkkkk. Scared, frightened on a Monday morning, after a few phone calls to our insurance company, we set out for the ER.

We got to the hospital around 9:30am and there was no one else in the waiting room and they were able to see us right away. We were seen by nurses and techs and waited and waited some more. Ethan did NOT have any more episodes on his own. At one point we were sent to the neurology unit, they did an EEG and made Ethan have a seizure while wearing a lot of tubes on his head and chest so they could see where these "episodes" were coming from in his brain. We went back to the emergency room and waited some more. We were there ALL DAY long. At 5:00, a team of doctors came in and told us Ethan has epilepsy. I hear you and I read your lips, but I know you did not just tell me my son has epilepsy. They also told us, they do not know why.

After giving us this news AND answering our questions, they tell us that the hospital neurology team cannot work with us because of our insurance, so they gave us some recommendations for some other doctors, but before we leave they give us RXs for Ethan and say these medicines have NOT been tested on children. These meds are created for adults, but we will write the prescription based his height and weight. They tell us there are MANY meds to treat seizures, but we just to have to see what works best for him. His new doctors would assess and make a recommendation. The good news, they said, was that is it not hereditary (because they saw my belly) and that we should not worry and concentrate on helping Ethan.

No one could have prepared us for what was in store for the rest of summmer and fall of 2003.

Please forgive my typos, spell check is NOT working ...

Feb 10, 2008

Welcome to Holland

I will be writing about Ethan on and off for the next few weeks ... this is why .....

My new blogging buddy, Amy, wrote a post this weekend about her journey with her son Spencer that moved me and caused me to remember. Amy and I are walking in similar shoes and after reading her post Saturday, I decided to tell you more about Ethan and what God has allowed to happen in our lives, not to garner sympathy, but to tell you about our journey and show you the goodness of God. He really does have our best interest at heart.

First this .......

Welcome to Holland - Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

"But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

What a reminder to me. God didn't plan for me to go to Italy but to Holland. And He is my guide.His plans and the journey He takes us on are always better than the plans and journey we have in mind for ourselves.

Jeremiah 29:11For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Isaiah 55:9"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Romans 8:28And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Emily Pearl Kingsley’s article has been widely circulated in support groups and medical circles.Please credit as follows: As published in “That All May Worship and Serve,” July, 2002, as published on the United Church of Christ Disabilities Ministries web site.


This is EXACTLY how I feel ... more on Ethan during the week.

Feb 9, 2008

Just two words ...

BUCKET LIST - Go see it. Okay that's 5 words, but believe me, this movie is good and leaves you thinking.

Feb 8, 2008

Who needs a nanny? I've got Austin

Austin (2 1/2) is ALWAYS helping me around the house, especially with his little brother DeClan (15 months). Yesterday while washing dishes a not so normal odor was swirling around the room and about to knock me out of the kitchen. I looked down and of course at my feet were Austin and DeClan playing. Do I have to tell where the aroma was coming from?

Me: Austin, DeClan .. please go to my room, so we can change your diapers.

Austin: It's not me Mom (Thank you for pointing out the obvious)

The two of them start walking back to my room, I finished rinsing the dishes and drying my hands. As I make my way to the hallway, Austin greets me with a wipe in hand and says, "Mom, please change DeClan's diaper, his butt stinks!"

Me: Ok, ok, I am on my way (Shaking my head)

Then what do I see in my room on the floor?

DeClan walking around with NO diaper, a diaper sitting just a few feet from him, velcroed nicely shut on one side, with wipes hanging out of the other side. Of course I think surely that is a not a diaper from this morning that I didn't throw away ... I look at DeClan again, he laughs and then Austin laughs and I say, Austin did you change your brother's diaper and he says YES! He did a good job too. He had wiped his brother several times to make sure he was clean and there was nothing left for mom to do, but inspect DeClan's butt, put on a new diaper and laugh, laugh, laugh. This boy did a better job that someone who shall remain nameless ... (ha)

I can only imagine what it looked like while Austin was taking the diaper off and cleaning up his baba. Bonding moment indeed. Brotherly love, it's called brotherly love.

Feb 7, 2008

Thankful Thursday

I am thankful for ................

  • Jesus Christ
  • Eternal life
  • Salvation
  • The ability to pray
  • Devotions
  • Time alone with God
  • God is all knowing
  • God is with me, I am never alone
  • Sound mind
  • Good health
  • A wonderful husband
  • Beautiful children
  • I'm at home with my children
  • Ethan's continued good health
  • Ethan's grades for the semester (4 A's 2 B's)
  • Austin's sponge like learning
  • DeClan's smile (He is so adorable)
  • Our home
  • My 2 sisters and CRAZY brother
  • Life on Life Bible studies at church
  • The battle is NOT mine it is the Lord's
  • We have victory in Jesus
  • Reliable transportation
  • Down time w/ hubby
  • My inlaws
  • A REALLY, REALLY great church
  • Weekends
  • Friends who really care
  • It starting to look like we are going on vacation in the Spring
  • We ARE being blessed with a big surprise in June
  • Clean water
  • Cool weather
  • A good hair day
  • A choice of 5 always clean grocery stores w/i 5 minutes of my house
  • Coupons
  • Rebates
  • really good food, good fun and laughter
  • Movie night
  • The 2 of you who read my blog .... ok all 3 of you

I will be praying for things as well, but wanted to give my Father praise ... a lot of these things I have taken for granted and do not want to do that anymore.

If you have a prayer request, email me offline and know that I will pray specifically for you before next Thursday.

Feb 6, 2008

Shopping On-Line

Shannon over at Rocks in my dryer hosts "Works for me Wednesday" and this is my first time to post and link in for all the fun. Read my post and then hop on over here to find more great recommendations for places to save and spend some money.

When I am able to shop, I absolutely love it, but getting out with 3 boys, a double stroller, a large baby bag and attitudes by the time we get out of the car and finally in the mall (mostly mine), I have learned online shopping can be a way to relieve some stress AND save some gas.

It is SO hard to find just the right outfit for the boys. I do not want them looking like little men, but really cute boys. I have done a ton of research and have found much success with The Children's Place, The Gap, Old Navy and when it is time to dress up, Janie and Jack.

When I am shopping for me, D or something for the house, I like
QVC, Coach and Overstock.com.

When I need a gift, I like
Red Envelope.

Don't know what to do with all the pictures you have and scrapbooking seems too overwhelming? Try
this. I have NOT ordered anything yet, but I AM making plans. Oh boy! This is the BEST find in a long time.

For gourmet snacks (A luxury), I love
Popcorn Papa and Selma's Cookies. At Easter and Christmas we have the best Turkey ever .. ever .. from here.

Have a wonderful Wednesday!

Feb 4, 2008

Expectations (Long post)

Sometimes you have to throw them right out the window ....

Expectation #1:
I thought when I grew up and was a big girl, I would go to college, get a really good HIGH paying job, drive a RED BMW, and always, always looked oh so pulled together.

Expectation #2
I thought I would be swept off my feet, marry the man of my dreams who was PERFECT in EVERYWAY, have the wedding of a lifetime, and we would live HAPPILY ever after, forever, AMEN.

Expectation #3
I thought after traveling all the beaches God created, we would begin to have HEALTHY children, 2 to 3 in fact, with a mixture of girls and boys. MY children would never misbehave and they would be model children everywhere we went, especially the grocery store or the mall when everyone was looking.

Expectation #4
I thought my parents and my in laws would ALWAYS be able to take the children whenever we needed them to, so that hubby and I could have our romantic dates and weekend getaways in our weekend adults only car. While we were gone the children would not give the grandparents any trouble at all ... never .. no ... never ...

Expectation #5
I thought my hubby and I would have great friends who were journeying in life just as we were and we could travel together, play together, have children the same ages and they would grow up as best friends and the cycle would continue for generations to come.


I did in fact attend college and had a WONDERFUL experience. I left in 1989 just a few hours shy of my degree to take a job as an afternoon news anchor/reporter making 15,000 per year (In radio, not TV) even though EVERYONE at the station where I interned said don't do it, don't do it. All I knew is that a LOT of the radio/tv majors who had already graduated were ending up in really small cities with hopes to move to a BIG MARKET city and I was already working in one, with a really cool job that I loved no matter what they paid me. So, I took the job instead of the degree. Yes, I do have regrets about that decision, a decision that was made at the ripe old age of 22. I have made plans to finish my degree and am looking forward to attending college ... again .. wow .. at my age .. I think I will do well.
Anyway ....
I drove a cool blue Ford Escort Sport and I always looked pulled together, but I wasn't paying attention to how much of the 15,000 I was spending for clothes and getting my hair done every week. The station WAS NOT providing a wardrobe salary, so yes, I was using my money. Oh yeah, the tax man cometh too! 15,000 AND the tax man .. you do the math.

I WAS in fact swept off my feet by D (the man of my dreams and so much more), we had a beautiful wedding. But as have we reflected on that day, a day where I thought everything would go off without a hitch, we have discovered some things did not go according to plan. I had BIG dreams and ideas and NO idea about how much things cost. Rings, flowers, videos, FOOD, have you priced food at a hotel lately? Have you seen what people ARE spending on weddings these days? Oh My Gosh! I could post an entry on weddings ALONE. ok, off the soapbox. Somewhere in my mind, I did not want to spend more than $2500.00 for the whole wedding, but on paper it was around $30,000. Guess which one we opted for? It was REALLY nice and reflected our love for each other and our committment to God. I did not know we would be the LAST people to leave, bring the tableclothes home to be washed or that my inlaws did NOT eat at the reception after being told 3 or 4 times, please sit down, you will be served. (I roll my eyes even today when they bring it up, how embarrasing) Even though we opted for spending less money for the wedding, I have no regrets about that decision.

We have been married 13 years this year, He IS NOT perfect and tells me so ALL the time. I know he is not perfect, he has flaws and imperfections, but somewhere in the back of my mind, I just knew he really would BE perfect. Especially after I molded him into shape (ha). D and I know without a shadow of a doubt that God placed us together and we are supposed to be together "until death do we part", but I guess the friendship, courtship, was so over the top .. I just knew our marriage would blow me away everyday. Under the surface, I was expecting flowers once a week, trips, shopping sprees, and gifts, lots of gifts, all the time, and surprises (Jai, wake up that IS expensive). D gives me gifts I never even thought about. He gives me gifts that cannot be bought, will never get lost and will not die. He gives me his time, his love, his protection, his prayers, his hugs, his smiles, phone calls throughout the day, "I love you's" AND he is wonderful man of God. He seeks God for instruction on loving me and loving me better.

I love my husband and I love my marriage, but the first "argument" we had almost sent me over the edge. I can't even remember what it was about, but I cried and then ran away. TO THE CAR. (Real smart kiddo, real smart) D is a person who likes to solve the problem now .. and not let it linger and fester .. Ephesians 4:26 "In your anger do not sin". "Do not let the sun go down while you are still angry". I, on the other hand am not like that, but had to grow into this revelation and I am STILL learning. It really has been good for our marriage.

I know I put D on an unrealistic pedestal and expected him to know what was going on in my mind. No, I NEVER shared any of the expectations, dreams, wants with him, because you know, he is supposed to know me. Afterall, God put us together .... right? Unfair to D, unfair.

We love each other and are in love with each other and ARE committed through the happy and sad, we will work it out and stay on our knees. It is not just the two of us, but three. (Jesus, D and Jai) We CANNOT move without consulting and seeking God.

Reality #3
God gave us 4 beautiful children, Ethan (11), Denham (would be 5 this year), Austin (almost 3), and DeClan (15 months). No one EVER said my pregnancies would go full term, I just expected them to. My pregnancy with Ethan was wonderful. I worked until the night before he was born. I gained 40 pounds (all in my belly) and lost every stinkin bit of weight and then some. Svelt size 8 I was .. oh yes I was. I loved being a mom, although I had no idea what I was doing. My mother passed away a year before I got married and I was pregnant 2 months after I became a new bride. My grandmothers were both in heaven and my two sisters were single with no children. Who, tell me, who was I supposed to get my Titus 2 instruction from? I was too afraid to ask. I prayed a lot and became more confident as a mom. We got pregnant again in 2003 with Denham and then the floor fell out from under me. Denham was born and died on the same day. Read more here. Then we were hit with the ultimate one two punch. Ethan was diagnosed with a brain tumor. He is doing VERY WELL today, but I expected my children to be healthy, no brainer. Never even prayed about my children's health. Even after having a mother who was ill for 10 years. I NEVER thought it giving my children's health to God in prayer. Now, I try to pray for and about my children DAILY.

Reality #4
I ALWAYS thought my parents and my in-laws would babysit for us, because I always expected them to be around. I never expected my parents to go to heaven so soon. My mom BEFORE all the grandchildren, my dad 2 years ago. My inlaws live in another state. The children see my husband side of the family 2 times a year. NEVER thought to pray about this before I got
married. Makes me love his family more, especially since they took me in and love like I am a real, blood family member. My sisters ARE here for me and it warms my heart to see my children's eyes light up when MeMe and JenJen come to see them, but I always expected and wanted to hear my children say Poppy and Nana.

Reality #5
I can remember my parents playing cards, pokeno and spades with their "couple" friends. Laughing .. all ...the... time.... I knew it would be the same for me and hubby.
My husband and I have friends we love dearly, but not a couple that is our Fred and Ethel (that's what was in my head). We have three boys, our friends have girls. We have 1 older and 2 younger, our friends have older than Ethan. Our friends are active, we have been homebodies since Ethan's diagnosis and are just now getting back out in the world. Frankly, some people don't understand where we have come from and why we make decisions we make (especially when it comes to Ethan) We have met some people, but the chemistry is not the same for both husbands or both wives.

It never occured to me this would be an issue for us. BUT GOD. We know we have to be friends to get friends. DID I SAY, we DO love the friends God has brought us in the last few years.
BOY, do I hope I explained this right ..

Expectations can be a SET UP for a LET DOWN, especially when there is no communication with the other person you have these expectations from. Even if that person is you. You have to communicate with God and the people in your life. I have spent WAY to many days mad, angry, depressed, feeling sorry and I will NEVER get those days, minutes, hours, back. NEVER.

I am NOT saying is it wrong to have standards, goals and dreams for yourself and your family. I AM saying communicate, communicate, communicate with those around you and especially with God through prayer. When it is ALL in your head, but things are never said .. how is anyone supposed to know what you want? It is not fair to you or the people you live this life with if you EXPECT one thing, get another and they never even knew and then you get mad and start WWIII. I have learned the hard way about expectations and I am learning to get them out of my head and into some dialouge.

I know I will be better for it and my life will be more fulfilling.

Feb 1, 2008

Good day ..

I am sick, very, very sick. I just can't shake this cold, yuck, junk, allergies .... whatever it is. God sure knows how to brighten my day though ...

Me: I love you DeClan (14 months)
DeClan: I lu u (w/ a kiss on my cheek)
Me: Oooohhhhhh

Thank you DeClan, my last baby .. mommy so needed that!

Now for another cup of theraflu, niquil, sprite, something to soothe my throat ... and prayers so my babies won't catch this junk.

Have a blessed weekend ... BE a blessing to someone ...