Hi -
I had the website address wrong - it is www.reecesrainbow.com.
Wednesday, January 13, 2010
Jesus Has Our Backs
Happy 2010!
Starting at Thanksgiving and ending today is the busiest time of the year for our family. We travel to visit our families in Iowa for the holidays and then Luke and Abigail celebrate their birthdays on January 7th (Luke) and January (13th). This year was a little busier than usual because, for the first time since last May, our family got sick - about 5 days before Christmas. Marie and Abigail are still sick with coughs and diarrhea. You know, for some people this might be discouraging (and it is a little - it has been 4 weeks), but for the most part I am just thankful for nearly seven months of good health. We never got a sniffle - Jonathan never got a sniffle - for seven months. That is HUGE in a home with four children under age eight.
Marie is asleep on the sofa right now so I wanted to write about how God has been moving in our lives lately.
On the same fifth day before Christmas that Luke brought sickness home from school, Jonathan's oncology blood tests came back with some scary results. The test showed that his red blood cells are enlarged - this condition is known as myelodsysplasia, a rare form of leukemia. (Jonathan has a 65% chance that he will develop leukemia before he reaches age five - hence the frequent blood checks.) I have always known this risk, but until the red blood cell flag waved in front of me I believed with my whole heart that it would never happen to my sweet fella. I was devastated and scared - pretty much senseless. I have a pretty good imagination so my fears were getting the best of me. I researched insanely on the computer and am very confident in my knowledge regarding myelodysplasia - it is not something you want to be diagnosed with. By the time Christmas was over and we were home I was preparing for the worst, i.e. months of chemotherapy.
Throughout this "vacation", all three of the older lovelies were sick. Jonathan had a mild cough, but never got "sick." I was convinced we had H1N1 - Jonathan was the only one who was vaccinated for H1N1. Nope. On the first day the older three went back to school, Jonathan got diarrhea and a bigger cough. By Thursday, January 7th he was in the hospital with pneumonia. The hospitalization, while depressing and, well, exhausting, was an answer to my pleading Christmas prayers to God. While Jonathan was in the hospital the oncology team became involved and after I cross-examined them (and displayed my vast knowledge of myelodysplasia - my law degree is turning out to be very helpful lately) they agreed to have a hemotologist perform a smear cell analysis of his blood cells. After the analysis the oncologist called back and said that it was the hemotologist's opinion that children with Down Syndrome do not have red blood cells within the normal range until after the first year of life. He opined that Jonathan's red blood cells were not problematic and observed that while they are large, they have gone down in size each month since his birth. Amen. Thank-you Jesus. Why do I think this was an answer to prayer? If Jonathan had not been hospitalized it could have been months before the hemotologist became involved during which time I would have festered and worried needlessly.
Anyway, I am thankful and I am not going to take his health for granted anymore. I'm praying for his cancer-free babyhood, toodlerhood and preschool years - and this is not easy to pray for so please help me.
He is doing great by the way. He sits and plays with toys. He eats crackers by himself. Oh - another answer to prayer - today while I was trying to clear the table I saw him playing with a wet paper towel. I took it away - but I didn't check his mouth - he is my fourth child, I just don't get alarmed that easy. Anyway, I took him upstairs to change his diaper and he started to gag. I sat him up and out came a quarter-sized glob of paper towel. After my mind stopped flying through all the doomsday scenarios that could have occurred, I thought again about how Jesus has had my fellas back since the day he was conceived in my body - from life's little paper towel mishaps to full-blown leukemia. God must have a very special plan for my fella. I can't wait to see what it is.
Okay - one more answer to prayer. This one is for the older three lovelies. For the past month or two Abigail and Marie have been noticing the special things about Jonathan's appearance - mainly that his tongue is dangling out of his mouth a lot. I have told them that God gave Jonathan an extra-large tongue - a common happening in children with Down Syndrome. I told them as he gets older it will be easier for him to keep it in - especially with the older three's "encouragement." It got me thinking though that it was time to share more information about Down Syndrome with them. I have been pretty cautious because I don't want them to worry or be afraid. They love Jonathan more than I can possibly express - and I can express. The minute they get in the van after school the conversation goes somthing like this: "I claim Jonathan first! No, I get to hold him first! Mama who gets him first?" So, I looked in the hospital library for a book to share with the older three kids, but nothing seemed quite right.
My kids and I really like American Idol. It is the only show we watch as a family - we blip-out the commercials. For the most part, it is a "clean" show. You may disagree, but it is our winter thing and we love to snuggle up and cheer for our favorite singer. The season premiere was last night. In case you aren't familiar with the format of the show, the season begins with thousands of would-be idols auditioning across the country. To keep things interesting, the shows producers highlight a few of the contestants' personal journeys to the Idol audition. (Think: cancer survivor, homeless teen, etc.). Ten minutes into the show they start a segment on a sixteen year old girl from a family of nine siblings. Next shot - she is playing with her nine-year-old brother -who has Down Syndrome. She goes on to share how much she loves her brother and then her parents come on. They adopted two other boys with Down Syndrome after her first brother was born and the camera zooms in on the boys playing and running down the street. My kids are GLUED to the screen and shouting out about Down Syndrome. I am crying, but they don't notice. Craig is sitting on the floor - likely wondering how this is all going to turn out. The segment ended and the sister sang a lovely Christian hymn - I had never heard it before - she made the cut with the judges and is "going to Hollywood." Craig and I sat in silence and the kids said nothing.
This morning after Abigail and Luke left for school I asked Marie what she thought of the boys with Down Syndrome on American Idol last night. She said, "I thought it was nice they adopted that brother with Down Syndrome. He needed a friend. No one wants to be alone." (See www.reece'srainbow.com) I asked her if she could tell the boys had Down Syndrome. She said she could because they had glasses. Well, that is an over broad net, but tongues and glasses are on her five-year-old radar right now. Anyway, God heard my cry. And he answered my cry in a way my family would hear, in a forum that would get their attention and give them just what they needed to see and hear. Isn't that absolutely amazing. I can't get over it. He is ALWAYS faithful. Amen.
Hope you are all cozy and warm. Happy New Year!
Love,
Jill
Starting at Thanksgiving and ending today is the busiest time of the year for our family. We travel to visit our families in Iowa for the holidays and then Luke and Abigail celebrate their birthdays on January 7th (Luke) and January (13th). This year was a little busier than usual because, for the first time since last May, our family got sick - about 5 days before Christmas. Marie and Abigail are still sick with coughs and diarrhea. You know, for some people this might be discouraging (and it is a little - it has been 4 weeks), but for the most part I am just thankful for nearly seven months of good health. We never got a sniffle - Jonathan never got a sniffle - for seven months. That is HUGE in a home with four children under age eight.
Marie is asleep on the sofa right now so I wanted to write about how God has been moving in our lives lately.
On the same fifth day before Christmas that Luke brought sickness home from school, Jonathan's oncology blood tests came back with some scary results. The test showed that his red blood cells are enlarged - this condition is known as myelodsysplasia, a rare form of leukemia. (Jonathan has a 65% chance that he will develop leukemia before he reaches age five - hence the frequent blood checks.) I have always known this risk, but until the red blood cell flag waved in front of me I believed with my whole heart that it would never happen to my sweet fella. I was devastated and scared - pretty much senseless. I have a pretty good imagination so my fears were getting the best of me. I researched insanely on the computer and am very confident in my knowledge regarding myelodysplasia - it is not something you want to be diagnosed with. By the time Christmas was over and we were home I was preparing for the worst, i.e. months of chemotherapy.
Throughout this "vacation", all three of the older lovelies were sick. Jonathan had a mild cough, but never got "sick." I was convinced we had H1N1 - Jonathan was the only one who was vaccinated for H1N1. Nope. On the first day the older three went back to school, Jonathan got diarrhea and a bigger cough. By Thursday, January 7th he was in the hospital with pneumonia. The hospitalization, while depressing and, well, exhausting, was an answer to my pleading Christmas prayers to God. While Jonathan was in the hospital the oncology team became involved and after I cross-examined them (and displayed my vast knowledge of myelodysplasia - my law degree is turning out to be very helpful lately) they agreed to have a hemotologist perform a smear cell analysis of his blood cells. After the analysis the oncologist called back and said that it was the hemotologist's opinion that children with Down Syndrome do not have red blood cells within the normal range until after the first year of life. He opined that Jonathan's red blood cells were not problematic and observed that while they are large, they have gone down in size each month since his birth. Amen. Thank-you Jesus. Why do I think this was an answer to prayer? If Jonathan had not been hospitalized it could have been months before the hemotologist became involved during which time I would have festered and worried needlessly.
Anyway, I am thankful and I am not going to take his health for granted anymore. I'm praying for his cancer-free babyhood, toodlerhood and preschool years - and this is not easy to pray for so please help me.
He is doing great by the way. He sits and plays with toys. He eats crackers by himself. Oh - another answer to prayer - today while I was trying to clear the table I saw him playing with a wet paper towel. I took it away - but I didn't check his mouth - he is my fourth child, I just don't get alarmed that easy. Anyway, I took him upstairs to change his diaper and he started to gag. I sat him up and out came a quarter-sized glob of paper towel. After my mind stopped flying through all the doomsday scenarios that could have occurred, I thought again about how Jesus has had my fellas back since the day he was conceived in my body - from life's little paper towel mishaps to full-blown leukemia. God must have a very special plan for my fella. I can't wait to see what it is.
Okay - one more answer to prayer. This one is for the older three lovelies. For the past month or two Abigail and Marie have been noticing the special things about Jonathan's appearance - mainly that his tongue is dangling out of his mouth a lot. I have told them that God gave Jonathan an extra-large tongue - a common happening in children with Down Syndrome. I told them as he gets older it will be easier for him to keep it in - especially with the older three's "encouragement." It got me thinking though that it was time to share more information about Down Syndrome with them. I have been pretty cautious because I don't want them to worry or be afraid. They love Jonathan more than I can possibly express - and I can express. The minute they get in the van after school the conversation goes somthing like this: "I claim Jonathan first! No, I get to hold him first! Mama who gets him first?" So, I looked in the hospital library for a book to share with the older three kids, but nothing seemed quite right.
My kids and I really like American Idol. It is the only show we watch as a family - we blip-out the commercials. For the most part, it is a "clean" show. You may disagree, but it is our winter thing and we love to snuggle up and cheer for our favorite singer. The season premiere was last night. In case you aren't familiar with the format of the show, the season begins with thousands of would-be idols auditioning across the country. To keep things interesting, the shows producers highlight a few of the contestants' personal journeys to the Idol audition. (Think: cancer survivor, homeless teen, etc.). Ten minutes into the show they start a segment on a sixteen year old girl from a family of nine siblings. Next shot - she is playing with her nine-year-old brother -who has Down Syndrome. She goes on to share how much she loves her brother and then her parents come on. They adopted two other boys with Down Syndrome after her first brother was born and the camera zooms in on the boys playing and running down the street. My kids are GLUED to the screen and shouting out about Down Syndrome. I am crying, but they don't notice. Craig is sitting on the floor - likely wondering how this is all going to turn out. The segment ended and the sister sang a lovely Christian hymn - I had never heard it before - she made the cut with the judges and is "going to Hollywood." Craig and I sat in silence and the kids said nothing.
This morning after Abigail and Luke left for school I asked Marie what she thought of the boys with Down Syndrome on American Idol last night. She said, "I thought it was nice they adopted that brother with Down Syndrome. He needed a friend. No one wants to be alone." (See www.reece'srainbow.com) I asked her if she could tell the boys had Down Syndrome. She said she could because they had glasses. Well, that is an over broad net, but tongues and glasses are on her five-year-old radar right now. Anyway, God heard my cry. And he answered my cry in a way my family would hear, in a forum that would get their attention and give them just what they needed to see and hear. Isn't that absolutely amazing. I can't get over it. He is ALWAYS faithful. Amen.
Hope you are all cozy and warm. Happy New Year!
Love,
Jill
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