Happy Sunday!
I had a morning at church today. This past year has been an unsettled year for us as far as church attendance at our regular church, North Heights. Jonathan was sick, and or medically fragile, for most of the last year and we tried to avoid the particularly germy places, i.e. Chuck-e-Cheese and the church nursery. For the last few months, we have gone back to the church we went to for many years - Woodland Hills Church in Maplewood, MN.
Today, we all piled into one of the back rows in the sanctuary. After a while, Jonathan got a tiny bit wiggly and Craig took him out - with Abigail and Luke hot on his trail. Marie and I stayed and listened to Greg Boyd deliver a sermon in his Scandalous Love series. About 10 minutes into his sermon I heard some noise in the back and noticed a mother with two older girls and a baby Jonathan's age. One of the daughters was struggling and making some noise - the next thing I knew she was coming right toward me. She sat down next to and held my hand and tried to talk...but her words were garbled and hard to understand. I rubbed her back and looked into her eyes and she seemed to calm down. Soon her mom and two sisters came over and sat down by us. Her mom apologized and I told her it was okay...and I meant it with all my heart. Her daughter was still squeezing my hand and was now going through her alphabet flash cards with me. Her mom told me her daughter was nine years old and had some developmental delays.
The service went on and this young woman continued to not-so-quietly practice her letter sounds with Marie and I. Just a note: one of the many beautiful things about Woodland Hills is that at no point did anyone turn and scowl at us - in fact, the opposite happened, the young man in front of us turned and smiled and so did the elderly ladies next to us. I was so thankful because this woman clearly had a hard time getting her girls to church - and keeping them there.
As time passed, she commented on how I was missing the whole sermon. I said it was okay. I was thinking to myself that the whole sermon was about God's scandalous love for us - and something about us being a black hole - whatever it was about, this young girl needed my love. As she struggled to talk and think of the letter sound for "B" I could barely hold it together. I kept thinking of Jonathan and his present struggle to talk and wondering if he would have letter cards in church when he was nine. After her mom apologized again, I held back a few tears and told her that my little Jonathan had Down Syndrome and that he was out in the lobby with my husband. She smiled and said she was sorry. (FYI - I'm okay when people say they are sorry - it is a very common response - just KNOW that I am not sorry).
Well, the service went on and the whole time I was thinking about how helpful I was being to this young girl and her mom. Good grief. After the service ended her mother grabbed my hands and asked if we could pray together. I said yes, of course. (As Marie tugged my arm and her daughter wrestled for freedom). This beautiful woman didn't pray for her daughter, or thank God for putting her next to someone who would be okay with a distraction this Sunday. She prayed for Jonathan. She prayed that he would be blessed, be healthy, be free of developmental delays, etc., etc, etc. I was crying and soon my whole family was standing there wondering what one earth was going on. I couldn't understand all she prayed for today - her accent was thick and between her daughter and my lovelies I had a hard time concentrating. Praise God - she didn't. She prayed loudly and boldly through it all. After she finished - I never said a word - she left me speechless - we introduced eachother and agreed that we would sit together in that back pew next week.
I can still smell her perfume on my hands as I type these words. I don't want to wash my hands because I don't want the memory of this encounter to fade away. I am so thankful this young woman came and sat by ME. Woodland Hills is a very big church and while it is unlikely she would have ambled to the front of the auditorium, she could have chosen one of the other hundred or so seats in the back. (It wasn't so crowded today). I would like to think that God directed her to me - and my family. Marie was very patient with her and Luke was - I'm honestly not sure - he was preoccupied with getting to the candy machine by the exit door. Abigail had a harder time. The young girl grabbed her wrist and took her water bottle away. Abigail was very startled and started to cry. We talked about it after church, and I think she understands now - but it is hard. She understands many things she didn't even know existed at this time last year. I'm just praying that she always goes to God with her fears and concerns.
Anyway, that was my morning. Maybe I will listen to the sermon on the internet, but even if I don't it was the best church service I have been to in years. Thank-you God.
Love,
Jill
Sunday, May 23, 2010
Monday, May 10, 2010
My Treasure
Children are a gift from the Lord; babies are a reward.
Psalm 127:3 (NCV)
I am so lucky to have four presents from the Lord! They are so beautiful and fun and loving...what else could a girl want?
Well, they gave me an extra special Mother's Day present this year. And they are all enjoying it thoroughly. Craig declared this "The Year of Fun" when buying the present. Any ideas? Don't even try...you'll never guess.
Craig loves to surf around on Craig's list. For tools, books, large saws, trailers...all kinds of stuff he "needs." On the flip side, Craig loves to research all life's major purchases(think ovens), and minor purchases(think vacuums),in Consumer Reports. I was never quite sure how these purchasing approaches could be reconciled until he bought my Mother's Day present this year.
Craig found my Mother's Day present on Craig's List this year...nope, not a chainsaw. We drove about 45 minutes north to a small town and there it was. A butter-yellow VW convertible. It was sitting in the driveway of one of those car dealerships you drive buy and think "Who on earth would buy a car there?" We pulled into the "dealership" and all six of us piled out of the minivan. The kids immediately ran to the beetle, opened the doors and hopped in. The apparent owner of the dealership came out and just handed me the keys - he didn't even ask my name. Just told me to take it for a spin. So I did. The three oldest kids screeched and hollered the whole time. When we went back Craig had discussed the previous life the VW. The most-friendly-nonaggressive-carsalesman on the planet told us the VW had sustained smoke damage from a house fire while parked in the attached garage. Hmmm - we didn't smell anything - I guess the roof was down. Oh well. He degreased the outside and it looked good to us. We bought it three hours later with a personal check. No inspections, no Consumer Reports, no months and months of discussions about the purchase.
We have already logged 200+ miles on B.B. (The kids named the car - I thought it stood for Beetle Bug, they said it stands for Beetle Butt...ughhhh...that genre of humor is our unfortunate mainstay right now - maybe we can rename it in a few years...)
Anyway, we are having fun in B.B. during our self-proclaimed Year of Fun.
Love,
Jill
Psalm 127:3 (NCV)
I am so lucky to have four presents from the Lord! They are so beautiful and fun and loving...what else could a girl want?
Well, they gave me an extra special Mother's Day present this year. And they are all enjoying it thoroughly. Craig declared this "The Year of Fun" when buying the present. Any ideas? Don't even try...you'll never guess.
Craig loves to surf around on Craig's list. For tools, books, large saws, trailers...all kinds of stuff he "needs." On the flip side, Craig loves to research all life's major purchases(think ovens), and minor purchases(think vacuums),in Consumer Reports. I was never quite sure how these purchasing approaches could be reconciled until he bought my Mother's Day present this year.
Craig found my Mother's Day present on Craig's List this year...nope, not a chainsaw. We drove about 45 minutes north to a small town and there it was. A butter-yellow VW convertible. It was sitting in the driveway of one of those car dealerships you drive buy and think "Who on earth would buy a car there?" We pulled into the "dealership" and all six of us piled out of the minivan. The kids immediately ran to the beetle, opened the doors and hopped in. The apparent owner of the dealership came out and just handed me the keys - he didn't even ask my name. Just told me to take it for a spin. So I did. The three oldest kids screeched and hollered the whole time. When we went back Craig had discussed the previous life the VW. The most-friendly-nonaggressive-carsalesman on the planet told us the VW had sustained smoke damage from a house fire while parked in the attached garage. Hmmm - we didn't smell anything - I guess the roof was down. Oh well. He degreased the outside and it looked good to us. We bought it three hours later with a personal check. No inspections, no Consumer Reports, no months and months of discussions about the purchase.
We have already logged 200+ miles on B.B. (The kids named the car - I thought it stood for Beetle Bug, they said it stands for Beetle Butt...ughhhh...that genre of humor is our unfortunate mainstay right now - maybe we can rename it in a few years...)
Anyway, we are having fun in B.B. during our self-proclaimed Year of Fun.
Love,
Jill
Tuesday, April 6, 2010
One Year
Happy One Year Birthday Jonathan!
I have been waiting to write an entry worthy of Jonathan's first year of life...but the words just won't come. In sum: What a year. What else can you say? Our little fella has covered more ground in the first twelve months of his life here on earth than most people cover in a lifetime. He has overcome obstacles of every variety, touched people's souls and emerged with a smile on his face.
I obviously can't chronicle every moment of Jonathan's last year in my blog - although I am recording it all for a book that maybe no one but Jonathan and I will enjoy...oh, I know my Lord will because it is, at the end of the day, all about His mercy, love, and power. Here is a tiny glimpse into the journey we have been traveling on for the last year-and-a-half.
On Valentine's Day, 2009, our family left for a vacation to Sanibel Island, Florida. I am completely irrational about my trip to the "White Beach" every year. I would live on the White Beach if I could think of a workable way to fund my family's life there. It is just slower...and warmer...and simpler. So, even though I was courting a high risk pregnancy there was no way I was missing my trip. I knew, when we planned the trip that January that something big was coming. I just knew - even though I would not admit it to myself - God had spoken to me. I just couldn't bear to process His words.
We had a great four days on the island. We swam and I discovered for the first time, during pregnancy no. 4 that a big belly feels weightless underwater. My heart was heavy during the trip with the anticipation of the final months of my pregnancy. You see, there are many words I could find to describe myself, but patient is not one of them. I still marvel that I made it 31 weeks to see the end of pregnancy and the learn the answer to the question of Jonathan's health. It is unprecedented patience for me. I used to search out my presents as a child weeks before Christmas. I still do.
On the final night of our trip there I went onto the beach at nightfall - my favorite time (everything goes gray - it is very cool) - and prayed. My prayers were of absolute desperation as I begged God not to let Jonathan have any affliction that would rob him of the life I wanted him to have. I remember kneeling in the sand - conscious of what others might think - but going ahead anyway because I refused to hold back any of my request. I cried...heaving sobs...and begged for God's mercy. After about 30 minutes I got up - I don't remember any people on the beach - and I felt like I had finally done it. I had prayed this same prayer so many times I was done. I wasn't going to ask God again. I know I had exhausted Him with my request and amazingly, I had even tired of it myself. I walked back to the hotel room and never prayed that prayer again. Jonathan was born on Wednesday, March 4, 2009 at 2:46pm. Within minutes after his birth I learned that he most likely had Down Syndrome. Several hours later I learned he had a rare form of leukemia. Two days later he had a gastrointestinal bleed that could have taken his life. And one month later, on April 4th, 2009, I listened to a doctor tell me that Jonathan would likely die in the next few days.
But. That is not the end of the story. That is the really hard, really painful, really make-you-wonder-why-you-are-reading this blog story. The story just began on those days. A real life story of miraculous deliverance for Jonathan (he is alive and healthy today and by every measure available doing "phenomenal") and for me.
We went back to the White Beach last week - same hotel, same beach. I told you, I am not rational about this. The first thing I did when we got there was walk out to that beach. It all looked exactly the same. But I am not. I cried a few minutes. I thanked God for being there for me...and of course, Jonathan. I did ask him "Why?" I also thanked him for not answering my annoying prayer that He was forced to listen to daily for nearly 7 months. I am sorry about that. I have come to imagine God feeling the way I feel when Luke asks me endlessly for candy, or Abigail for presents, or Marie for play dates. Ughhh...I was annoying. I am glad He has more willpower than me. More wisdom than me. A better plan than me. I still feel pain, mostly worry, today but I wouldn't change a thing. And if anything did change I would be devastated. It is strange - almost inexplicable. To want something to not be so desperately, but to know its loss would be unbearable.
Anyway, I felt a circle close at that moment. The rest of our vacation was the same as all our vacations there. Sunny, warm and simple. And filled with a little wonder. We stayed at a pretty big resort complex with quite a few condo buildings...it is a popular choice for families with young children. On the first day we were there Craig asked me if I saw the little three year old boy with dark hair in front of us on the beach. Abigail perked up and said "Mama he has Down Syndrome - look at his ears!" She was right, he did. A sweet little boy from Germany on a cozy Florida beach. Seeing one boy with Down Syndrome is not so remarkable, but we saw 7 more children in our resort during the next few days. The next day a boy named Jake (from Edina) was swimming in the pool when we arrived - he was 13 and he has Down Syndrome. It took our budding geneticist about 25 seconds to spot Jake. Then we spotted a five year old girl with Down Syndrome in the shallow end and another 12 year old girl with Down Syndrome sitting on a pool chair. Amazingly, this was not a big pool. There were only 11 kids - including mine - swimming in the pool. Craig I talked to Jake's mom for awhile and met his beautiful older sister. (Note: I have yet to meet a person whose sibling has Down Syndrome that does not radiate a peaceful, loving joy. I know they are there, but my experience so far has been an answer to prayer.) Two hours later we went down to the beach to find starfish stranded on the sandbar and there was another teenage boy with Down Syndrome standing at the water's edge. Finally, on the last night of our stay we met a five year old boy with Down Syndrome and his three older siblings.
Craig and I are still trying to process this unusual occurrence. I am trying to figure out if God was behind the convergence of all these families, or if it was just a happening. If He was trying to help out our older three by showing them more, or if it was all a fluke. I guess it doesn't matter. Halfway through the vacation I wondered what I would have thought if it had happened last year. I probably would have gone into labor. Maybe God was behind this timing.
Well, there is a snippet into our lives this past year. We are blessed - all six of us - beyond our comprehension. I'll write again when Jonathan takes his first steps - which, miraculously, will probably be before when his first birthday should have been...May 1, 2010.
Thank-you Father -
Jill
I have been waiting to write an entry worthy of Jonathan's first year of life...but the words just won't come. In sum: What a year. What else can you say? Our little fella has covered more ground in the first twelve months of his life here on earth than most people cover in a lifetime. He has overcome obstacles of every variety, touched people's souls and emerged with a smile on his face.
I obviously can't chronicle every moment of Jonathan's last year in my blog - although I am recording it all for a book that maybe no one but Jonathan and I will enjoy...oh, I know my Lord will because it is, at the end of the day, all about His mercy, love, and power. Here is a tiny glimpse into the journey we have been traveling on for the last year-and-a-half.
On Valentine's Day, 2009, our family left for a vacation to Sanibel Island, Florida. I am completely irrational about my trip to the "White Beach" every year. I would live on the White Beach if I could think of a workable way to fund my family's life there. It is just slower...and warmer...and simpler. So, even though I was courting a high risk pregnancy there was no way I was missing my trip. I knew, when we planned the trip that January that something big was coming. I just knew - even though I would not admit it to myself - God had spoken to me. I just couldn't bear to process His words.
We had a great four days on the island. We swam and I discovered for the first time, during pregnancy no. 4 that a big belly feels weightless underwater. My heart was heavy during the trip with the anticipation of the final months of my pregnancy. You see, there are many words I could find to describe myself, but patient is not one of them. I still marvel that I made it 31 weeks to see the end of pregnancy and the learn the answer to the question of Jonathan's health. It is unprecedented patience for me. I used to search out my presents as a child weeks before Christmas. I still do.
On the final night of our trip there I went onto the beach at nightfall - my favorite time (everything goes gray - it is very cool) - and prayed. My prayers were of absolute desperation as I begged God not to let Jonathan have any affliction that would rob him of the life I wanted him to have. I remember kneeling in the sand - conscious of what others might think - but going ahead anyway because I refused to hold back any of my request. I cried...heaving sobs...and begged for God's mercy. After about 30 minutes I got up - I don't remember any people on the beach - and I felt like I had finally done it. I had prayed this same prayer so many times I was done. I wasn't going to ask God again. I know I had exhausted Him with my request and amazingly, I had even tired of it myself. I walked back to the hotel room and never prayed that prayer again. Jonathan was born on Wednesday, March 4, 2009 at 2:46pm. Within minutes after his birth I learned that he most likely had Down Syndrome. Several hours later I learned he had a rare form of leukemia. Two days later he had a gastrointestinal bleed that could have taken his life. And one month later, on April 4th, 2009, I listened to a doctor tell me that Jonathan would likely die in the next few days.
But. That is not the end of the story. That is the really hard, really painful, really make-you-wonder-why-you-are-reading this blog story. The story just began on those days. A real life story of miraculous deliverance for Jonathan (he is alive and healthy today and by every measure available doing "phenomenal") and for me.
We went back to the White Beach last week - same hotel, same beach. I told you, I am not rational about this. The first thing I did when we got there was walk out to that beach. It all looked exactly the same. But I am not. I cried a few minutes. I thanked God for being there for me...and of course, Jonathan. I did ask him "Why?" I also thanked him for not answering my annoying prayer that He was forced to listen to daily for nearly 7 months. I am sorry about that. I have come to imagine God feeling the way I feel when Luke asks me endlessly for candy, or Abigail for presents, or Marie for play dates. Ughhh...I was annoying. I am glad He has more willpower than me. More wisdom than me. A better plan than me. I still feel pain, mostly worry, today but I wouldn't change a thing. And if anything did change I would be devastated. It is strange - almost inexplicable. To want something to not be so desperately, but to know its loss would be unbearable.
Anyway, I felt a circle close at that moment. The rest of our vacation was the same as all our vacations there. Sunny, warm and simple. And filled with a little wonder. We stayed at a pretty big resort complex with quite a few condo buildings...it is a popular choice for families with young children. On the first day we were there Craig asked me if I saw the little three year old boy with dark hair in front of us on the beach. Abigail perked up and said "Mama he has Down Syndrome - look at his ears!" She was right, he did. A sweet little boy from Germany on a cozy Florida beach. Seeing one boy with Down Syndrome is not so remarkable, but we saw 7 more children in our resort during the next few days. The next day a boy named Jake (from Edina) was swimming in the pool when we arrived - he was 13 and he has Down Syndrome. It took our budding geneticist about 25 seconds to spot Jake. Then we spotted a five year old girl with Down Syndrome in the shallow end and another 12 year old girl with Down Syndrome sitting on a pool chair. Amazingly, this was not a big pool. There were only 11 kids - including mine - swimming in the pool. Craig I talked to Jake's mom for awhile and met his beautiful older sister. (Note: I have yet to meet a person whose sibling has Down Syndrome that does not radiate a peaceful, loving joy. I know they are there, but my experience so far has been an answer to prayer.) Two hours later we went down to the beach to find starfish stranded on the sandbar and there was another teenage boy with Down Syndrome standing at the water's edge. Finally, on the last night of our stay we met a five year old boy with Down Syndrome and his three older siblings.
Craig and I are still trying to process this unusual occurrence. I am trying to figure out if God was behind the convergence of all these families, or if it was just a happening. If He was trying to help out our older three by showing them more, or if it was all a fluke. I guess it doesn't matter. Halfway through the vacation I wondered what I would have thought if it had happened last year. I probably would have gone into labor. Maybe God was behind this timing.
Well, there is a snippet into our lives this past year. We are blessed - all six of us - beyond our comprehension. I'll write again when Jonathan takes his first steps - which, miraculously, will probably be before when his first birthday should have been...May 1, 2010.
Thank-you Father -
Jill
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
Tuesday, November 24, 2009
A Thankful Heart
Happy Thanksgiving!
Well, it goes without saying that I have a tremendous amount to be thankful for this Thanksgiving. Our precious Jonathan. He rolls, he eats Cheerios, he pushes off the floor, he babbles, and...he almost sits. And of course...he is healthy. I wanted to share a Thanksgiving sort-of psalm - God's words in this psalm have ministered to my heart:
Those who sow in tears will reap with shouts of joy. Though one goes along weeping, carrying a bag of seed, he will surely come back with shouts of joy, carrying his sheaves. Psalm 126:5-6.
I am so thankful that God has restored my heart, and Craig's heart, with joy. If I had known of this promise when Jonathan was born and was so sick it may have lessened my pain. It has been 8 1/2 months since Jonathan was born and my life has come full circle and taken somewhat of new direction. I feel a peace I have never felt before and a contentment that is certainly new to my disposition. I think I have even learned to be more patient and less planning. I have learned what it really means to "wait on the Lord" - and on several occasions I have had the strength to suppress my own agenda and wait for His. For all these things I am grateful. But, I have a few more.
I am thankful for my husband of eighteen years this November 23rd, Craig. He is a rock. When I first met him I was struck by his quiet confidence, intelligence, handsome appearance, wit and security in the Lord. Through all we have been through this year he has been loving, supportive and encouraging. He is an incomparable husband and wonderful father.
I am thankful for Abigail's sweet nature and gentle spirit. She talks to me and tells me everything about her school day...everyday. While this is overwhelming at times, it is also a huge blessing and I treasure her trust.
I am thankful for my recent Amtrak trip to Chicago with Luke. We rode 17 hours on a train in two day to visit Chicago. Traveling with Luke was like traveling with a best friend - we played chess, played cards , watched movies, built Lego's and had a fabulous time. It is true that we ate horribly - especially considering we were in Chicago - but he is only six years old. Our 48 hours was absolutely priceless - I will never forget it.
I am thankful for Marie's cheerful disposition. She is just so happy...and she loves kindergarten...especially the making-new-friends part. She wants play dates all the time - usually with the same little girl, Sky, who I am trying not to overwhelm.
And Jonathan. Thank-you Jesus. Never, ever, never, ever, never, ever will I forget your faithfulness.
Jill
Well, it goes without saying that I have a tremendous amount to be thankful for this Thanksgiving. Our precious Jonathan. He rolls, he eats Cheerios, he pushes off the floor, he babbles, and...he almost sits. And of course...he is healthy. I wanted to share a Thanksgiving sort-of psalm - God's words in this psalm have ministered to my heart:
Those who sow in tears will reap with shouts of joy. Though one goes along weeping, carrying a bag of seed, he will surely come back with shouts of joy, carrying his sheaves. Psalm 126:5-6.
I am so thankful that God has restored my heart, and Craig's heart, with joy. If I had known of this promise when Jonathan was born and was so sick it may have lessened my pain. It has been 8 1/2 months since Jonathan was born and my life has come full circle and taken somewhat of new direction. I feel a peace I have never felt before and a contentment that is certainly new to my disposition. I think I have even learned to be more patient and less planning. I have learned what it really means to "wait on the Lord" - and on several occasions I have had the strength to suppress my own agenda and wait for His. For all these things I am grateful. But, I have a few more.
I am thankful for my husband of eighteen years this November 23rd, Craig. He is a rock. When I first met him I was struck by his quiet confidence, intelligence, handsome appearance, wit and security in the Lord. Through all we have been through this year he has been loving, supportive and encouraging. He is an incomparable husband and wonderful father.
I am thankful for Abigail's sweet nature and gentle spirit. She talks to me and tells me everything about her school day...everyday. While this is overwhelming at times, it is also a huge blessing and I treasure her trust.
I am thankful for my recent Amtrak trip to Chicago with Luke. We rode 17 hours on a train in two day to visit Chicago. Traveling with Luke was like traveling with a best friend - we played chess, played cards , watched movies, built Lego's and had a fabulous time. It is true that we ate horribly - especially considering we were in Chicago - but he is only six years old. Our 48 hours was absolutely priceless - I will never forget it.
I am thankful for Marie's cheerful disposition. She is just so happy...and she loves kindergarten...especially the making-new-friends part. She wants play dates all the time - usually with the same little girl, Sky, who I am trying not to overwhelm.
And Jonathan. Thank-you Jesus. Never, ever, never, ever, never, ever will I forget your faithfulness.
Jill
Tuesday, September 29, 2009
Back to School - The Other Three Lovelies
Hi -
This has been a busy month at the Krummen household - I can't believe September is almost over. The big kids are in school and while that might reasonably suggest that I have more time...I am busier than ever. It occurred to me that while my blog is entitled "My Four Lovelies" the older three rarely get any press. Here are a few outtakes from their back-to-school adventure this past month:
Marie: My beautiful daughter started kindergarten this past month. She cried - a little - but is pretty excited about school. She has been going to this kindergarten classroom since Abigail was a kindergartner so she is very familiar with the surroundings. I asked her what she learned the other day and she said: "Mama, Mrs. Rollerson said the Bible can change your life...did you know that?" Why, yes, Marie I did. You know, you can learn your ABC's just about anywhere - but learning about the life-changing power of God's word - that is a different story.
Luke: My middle son is serious student. He doesn't care what the subject is - he doesn't care if he has learned it before. He loves school. He pops out of bed every morning and asks if it is a school day. My earlier experience with Abigail taught me to dread this question - but not with Luke - if it is a school day he dashes upstairs, grabs his clothes and is ready to go. I am trying to think of anything amusing regarding his return to school - but that just isn't his story. He is just a happy boy who likes to do worksheets and sit in a classroom. What on earth did I do to deserve this?
Abigail: My sweet oldest daughter is enjoying third grade - in fact, she has only said she didn't want to go to school once this whole month. This is HUGE. Abigail is a good student, but would rather stay home and read stories to Jonathan, or play Little Pet Shop, or make brownies or tend to her fish. I would have to say her favorite part of school this year - at least the part I see the most enthusiasm for - is, this is true, scripture memory. Apparently her class makes up motions to help them remember the verse they are studying. Last week's verse was, in part: "set an example in...purity." 1 Tim. 4:17. As she recites the verse to our family she vigorously scrubs her armpits and laughs hysterically.
Well, I am trying, but I can't not write about Jonathan. He is doing soooo good. And...the best news of all...HE CAN HEAR NORMALLY! He had an ABR test at Children's early this morning to analyze the effect of the tubes placed in his ears last month and the tubes did the job. God is so good - thank-you my Lord. Jonathan is being baptised on October 11th at North Heights Church in Arden Hills after the late service - please come and pray and rejoice with us if you are able!
Love,
Jill
This has been a busy month at the Krummen household - I can't believe September is almost over. The big kids are in school and while that might reasonably suggest that I have more time...I am busier than ever. It occurred to me that while my blog is entitled "My Four Lovelies" the older three rarely get any press. Here are a few outtakes from their back-to-school adventure this past month:
Marie: My beautiful daughter started kindergarten this past month. She cried - a little - but is pretty excited about school. She has been going to this kindergarten classroom since Abigail was a kindergartner so she is very familiar with the surroundings. I asked her what she learned the other day and she said: "Mama, Mrs. Rollerson said the Bible can change your life...did you know that?" Why, yes, Marie I did. You know, you can learn your ABC's just about anywhere - but learning about the life-changing power of God's word - that is a different story.
Luke: My middle son is serious student. He doesn't care what the subject is - he doesn't care if he has learned it before. He loves school. He pops out of bed every morning and asks if it is a school day. My earlier experience with Abigail taught me to dread this question - but not with Luke - if it is a school day he dashes upstairs, grabs his clothes and is ready to go. I am trying to think of anything amusing regarding his return to school - but that just isn't his story. He is just a happy boy who likes to do worksheets and sit in a classroom. What on earth did I do to deserve this?
Abigail: My sweet oldest daughter is enjoying third grade - in fact, she has only said she didn't want to go to school once this whole month. This is HUGE. Abigail is a good student, but would rather stay home and read stories to Jonathan, or play Little Pet Shop, or make brownies or tend to her fish. I would have to say her favorite part of school this year - at least the part I see the most enthusiasm for - is, this is true, scripture memory. Apparently her class makes up motions to help them remember the verse they are studying. Last week's verse was, in part: "set an example in...purity." 1 Tim. 4:17. As she recites the verse to our family she vigorously scrubs her armpits and laughs hysterically.
Well, I am trying, but I can't not write about Jonathan. He is doing soooo good. And...the best news of all...HE CAN HEAR NORMALLY! He had an ABR test at Children's early this morning to analyze the effect of the tubes placed in his ears last month and the tubes did the job. God is so good - thank-you my Lord. Jonathan is being baptised on October 11th at North Heights Church in Arden Hills after the late service - please come and pray and rejoice with us if you are able!
Love,
Jill
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