Friday, September 14, 2012
Joy in the morning
We were awakened this morning to a little man who wet the bed. Dad got up with him and cleaned him up and sent him in to me, just underwear on his tiny body. We snuggled up and tried to sleep a little more. A little while later the big boy came in after a coughing fit. He took over his daddies side of the bed, the dad had already given up sleeping and was getting ready for work. Just as we all get settled in the little princess starts reminding us that she too is in the room. I leave the boys in the bed and take her down to the white chair to nurse, this big chair sees a lot of our snuggling. She's more interested in playing than nursing, and that's ok by me, we don't get a lot of one on one time. I start to think about this long day ahead that started much earlier than I planned. I find myself so grateful, these 3 that call me mom. The snuggles they need, the cries from a baby who is really calling my name. They are so dependent on me right now, sometimes it is exhausting, but I find myself dreading the day it is no longer so. so today I will wipe bottoms, make breakfast, nurse, snuggle, do school, clean, make lunch, play, fix drinks for the 100th time it seems, change more diapers, discipline, make dinner, ready little ones for bed, and finally have a moment to rest, and I will be thankful for the little bit of time that I still get to do these things. Thankful for the little bit of time I still get to kiss booboos, settle fights and remind them to be kind and show love. Thankful for these gifts that God has entrusted us with, knowing that it will be over long before I'm ready.
Thursday, September 6, 2012
This life
Sometimes life is not pretty. Sometimes you are forced to realize your story is no fairy tale. Or maybe that is exactly what it is. A life with struggles, with just enough beauty to realize that beauty is truly worth fighting for, and that it must be fought for, it does not come easy.
We have a hero. He assured us that we would struggle in this world, but he has already overcome. The ending is set, there is happily ever after
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But before the happily ever after is struggle. Jesus laid down his life for us, literally. We have been called to do the same for others, but in a different sense....
Saturday, July 7, 2012
It has been at least a week since I have cried, Jude has been doing so well and this has all become oddly normal. But as he laid between ty and I last night I found myself wondering how long his little body has known pain. He was about 2 months past his 3rd birthday when he was diagnosed. I can remember for at least a short time before his diagnosis he complained of leg pain, but how long was it there before he felt the need to complain.
He's not a kid that craves attention, even now when he complains of pain I have to be careful how I react or he will say the pain is gone. I can hear him now, "my head hurts, but it will get better", it seems as though he is always trying to assure me he is fine.
Thankfully this week I cant seem to remember any complaints of pain, which is why I found myself crying tonite. Is he truly without pain, or is his body just so familiar with pain that he hardly notices. I find myself wondering what it feels like to live inside his body. I will never know, and he will never be able to tell me. And honestly, he will not likely remember. These years will pass and they will barely be a memory for him, and the pain will be gone. But for now he must go through these years, and I pray that he would be without pain. I pray that the complaint free weeks are because he is truly pain free. And I pray that when he looks back on his childhood he will see it as every child should, as a carefree time of great joy.
He's not a kid that craves attention, even now when he complains of pain I have to be careful how I react or he will say the pain is gone. I can hear him now, "my head hurts, but it will get better", it seems as though he is always trying to assure me he is fine.
Thankfully this week I cant seem to remember any complaints of pain, which is why I found myself crying tonite. Is he truly without pain, or is his body just so familiar with pain that he hardly notices. I find myself wondering what it feels like to live inside his body. I will never know, and he will never be able to tell me. And honestly, he will not likely remember. These years will pass and they will barely be a memory for him, and the pain will be gone. But for now he must go through these years, and I pray that he would be without pain. I pray that the complaint free weeks are because he is truly pain free. And I pray that when he looks back on his childhood he will see it as every child should, as a carefree time of great joy.
Sunday, June 24, 2012
Griffin - Strong in Faith
I just fed baby girl and checked on Jude again, it is 3am. It is a weird thing to watch your child wondering, is he pale enough or tired enough to need a transfusion. They said it was likely this week, so I just keep watching, wondering how they send us home with this responsibility. Watch for a fever, he is likely to get one and if he does he needs a hospital stay, 3 day minimum. So here I am in the middle of the night, as he sleeps so sweetly, touching his head, checking his color, checking his breathing, and thankful that none of the signs are significant enough to give the doc a call.
Yesterday I watched him play with his brother, running up and down the slipping slide, he hasn't figured out how to slide on it yet. I listened as they were supposed to be cleaning their room, but were just playing instead. We had to fuss at him once again, more than an hour after bed time for crawling in bed with his brother to play cars.
When I look at him I do not see Leukemia, and for that I am so thankful. But still I'm always looking for Leukemia when I look at him. I hope he doesn't always see it in my eyes. I pray that he and I and our family can all be brave.
I tell him what his name means, Jude - Praise, and he is so full of praise, Brian - strong and he shows me his muscles, Griffin - strong in faith, and he reminds me that his body is fighting ALL the germs, my body can fight 100 germs he tells me.
Faith like a child, ok God, that is what that looks like. Teach me this faith like a child. I pray for his precious body and hope that God answers my prayers. And each time I feel a little braver, a little more "strong in faith"
Yesterday I watched him play with his brother, running up and down the slipping slide, he hasn't figured out how to slide on it yet. I listened as they were supposed to be cleaning their room, but were just playing instead. We had to fuss at him once again, more than an hour after bed time for crawling in bed with his brother to play cars.
When I look at him I do not see Leukemia, and for that I am so thankful. But still I'm always looking for Leukemia when I look at him. I hope he doesn't always see it in my eyes. I pray that he and I and our family can all be brave.
I tell him what his name means, Jude - Praise, and he is so full of praise, Brian - strong and he shows me his muscles, Griffin - strong in faith, and he reminds me that his body is fighting ALL the germs, my body can fight 100 germs he tells me.
Faith like a child, ok God, that is what that looks like. Teach me this faith like a child. I pray for his precious body and hope that God answers my prayers. And each time I feel a little braver, a little more "strong in faith"
Thursday, May 24, 2012
God's Grace
So amazed by God's grace. My boy looks and seems to feel so healthy, he is doing amazing with chemo and now that he is on a break from steroids, he is his laughing, silly, go lucky self again.
We are going to the hospital to have our baby girl tomorrow and I have been so concerned with my excitement level. I feel so torn between my boys already, caring for Jude and making sure that Titus gets the attention he needs. I have been feeling like Jorja's appearance would feel like another responsibility that I just can't seem to fulfill right now, but once again, God's grace is so good, I have really been filled with excitement and hope today for what this little one is going add to our family. We can't wait to meet you Jorja Grace, and your brothers are so glad there will once again be space in mommy's lap for them!! :)
A verse that seems to keep popping up for me the past couple of weeks has been Eph. 3:20 (message) "God can do anything you know - far more that you could ever imagine or guess or request in your wildest dreams." This has rung so true for us. We see God's hand moving in Jude's treatments, responding better than we ever could have imagined. We see his hand moving in people around us, blessings of things that we never would have thought to ask for. His provision and love has been overwhelming.
We are going to the hospital to have our baby girl tomorrow and I have been so concerned with my excitement level. I feel so torn between my boys already, caring for Jude and making sure that Titus gets the attention he needs. I have been feeling like Jorja's appearance would feel like another responsibility that I just can't seem to fulfill right now, but once again, God's grace is so good, I have really been filled with excitement and hope today for what this little one is going add to our family. We can't wait to meet you Jorja Grace, and your brothers are so glad there will once again be space in mommy's lap for them!! :)
A verse that seems to keep popping up for me the past couple of weeks has been Eph. 3:20 (message) "God can do anything you know - far more that you could ever imagine or guess or request in your wildest dreams." This has rung so true for us. We see God's hand moving in Jude's treatments, responding better than we ever could have imagined. We see his hand moving in people around us, blessings of things that we never would have thought to ask for. His provision and love has been overwhelming.
Monday, May 7, 2012
Big Journey ahead
3 weeks ago my mom first noticed some unusual bruising on Jude and brought it to my attention. My first thought was Leukemia. I'm a bit of a hypochondriac, so I worked hard to assure myself it was just clumsy 3 year old boy. He bumps something about 20 times a day. We knew Jude had an iron deficiency and I always forgot to give him his vitamin, so the bruising was my sign that I really had to make sure he got that vitamin every day, and I also started paying more attention to the iro n he was getting in his diet.
A week ago saturday my family was having a cook out at my grandparents, and I mentioned the bruising. That along with the fact that my childs new favorite food was dirt made us all feel it was probably due to the lack of iron and we made sure Jude ate a hamburger that night and made plans to have more red meat in his diet(we eat alot of deer, but not much beef).
That night Jude started running a fever around 101 with no other symptoms. Sunday we celebrated Ty's birthday and his fever was around 100, still no other symptoms. I took him with me Monday morning to our MOPS group, we were having a special day and I was suppossed to lead a craft. We got everything set up and i was hoping Jude would just hang out in the class with me, but he was not feeling great and getting pretty grumpy. All the ladies assured me they had everything under control and told me to take that poor baby home.
Monday evening we ate cake at my moms to celebrate her birthday, his fever was just under 100 and my mom noticed he was looking kinda pale, my mind jumped again, Leukemia, but once again I worked hard to assure myself he was fine, he was just pale from the fever. Ty and I decided if he still had a fever we would take him to the doctor tuesday.
It had been a while since I got up and spent some time with God in the morning. Tuesday morning I believe the Lord woke me and gave me energy to meet with him. He is so good and knew what the day held even though I had no idea. I meditated on Psalm 3 and the verse "Salvation Belongs to the Lord" stuck with me. It was a beautiful start to a day I would never forget.
Jude's fever was 99.5 tuesday, we decided to give it one more day, but there was this other symptom that was bugging me. Jude had a few red blood dots by his eye, behind his ear and on his neck. I had not allowed myself to google anything about the bruising over the past weeks, the internet can make you believe you have anything, but I finally decided I would research thse dots. The reasons for them didnt seem to apply to Jude, then there was the phrase, possibly linked to cancer. I decided it wouldnt hurt to give the nurse a call, share the bruising, paleness, dots and fever, all just to ease my mind. She said we should come in right away.
I had a feeling blood might be drawn so I got jenn(and kathryn) to watch Titus so I could just focus on Jude and what the doctor might say.
They got us back within 10 minutes at the doctor and about 10 minutes later dr. bardi had us back out the door going to the hospital for some blood to be drawn. He assured us we would have results in about 30 minutes but didnt really say what he thought was going on. We got our blood work done and went to the store to get Jude a sucker for doing so well with the doc. The whole time we were going to doc and getting lab work Jude wanted to be held and seemed very tired.
About 15 minutes after the bloodwork, we were checking out at the store with a sucker and special drink and the doctor called.
He said it looks like Leukemia. I sat on the curb outside the store and cried as my sweet little Jude kept flashing me his beautiful little smile. The doctor said he was calling a doctor in Columbia and would call me back.
I made the call to Ty and he left work to come pick us up at the store, I couldn't drive. By the time he got to us I had already heard back from the doctor. The Doctor in Columbia wanted us to go right away to Carolinas so they could transport us to the Palmetto Health Children's Hospital in Columbia. By this point Jude was so exhausted and starting to fall asleep. Ty rushed us to the ER where they were expecting us and they immediately started working on him.
The Children's Hospital had sent out an ambulance with a pediatric team to come pick us up. Ty, my mom and I rode on the Ambulance with Jude to the hospital where he was immediately admitted into the PICU.
There we were met by an amazing team of doctors, nurses, child life specialists, and many others all waiting for Jude to arrive. They began giving him toys to comfort him and working on him right away and explaining to us what was going on and the action plan. We found that his Hemoglobin or red blood cells were about 1/4 of what they should be. This is why he was so exhausted. His white blood cells totalled 250,000, I believe the normal range is about 4000-11000. These were not good white blood cells, they were the leukemia cells, or mutated white blood cells. They were taking over all the space in the blood and not protecting the body as white blood cells should.
Jude spent a few nights in the PICU as the nurses and doctors worked hard to get his counts in a better range. He multiple blood and platelette transfusions and other procedures, we just kept signing papers to allow the doctors to work on him and make him well.
He started Chemo one day after we found out he had Leukemia. The Chemo knocks out the white blood cells, in an effort to get them to come back the way they should. Each day his WBC seemed to cut in half. All the scenarios the doctors shared with us went for the good in Jude. His little body was fighting and God's hand was/is all over him.
We had so many people praying and joining with us, the diagnosis was overwhelming, but God was moving.
Jude had to have a port put in his chest so that his chemo could easily be administered. He will have this for the next 3 years to receive his treatments.
Once again, when we came in his WBC was 250000, but when they let us go home today his count was 200, this is way below the normal range. This is part of the chemo plan, but because of this Jude has no way to fight infections or even defend itself against normal everyday germs we dont even notice.
This week has been Surreal. Today, Monday May 7th, Ty and I celebrate 7 years of marriage. We also celebrated our son getting to come home from the hospital one week after his diagnosis. For the next 3 months we will go once a week for treatments, they will share with us more details later. They didnt want to give us to much to deal with at once.
I feel moments of knowing God is in control and taking care of my baby and that he is going to fine. Moments of feeling unable to tackle the task of caring for this boy that I love so dearly. Moments of feeling this just cant be real. Moments of faith, moments of panic. I feel composed then completely unable to control the tears.
When we left the hospital today I had a bit of a breakdown, I didnt want to leave, I cried, nearly threw up and pretty much had a fit. But here we are at home, well my moms, home for the next week while some work happens at our house. Jude is asleep in his bed and I'm trying to resist the urge to go check his forehead once again to make sure there is no fever. Any normal thing a kid may go to the pediatrician for or just take some motrin for is likely a reason for a 2 day minimum stay in the hospital for Jude. For this first month we will have no visitors besides specific people who have trained with us to care for Jude and very few family members. No kids at all but Titus. The doctor said that for the next 6 months or so Jude will not be in a class setting with other kids at all. In a month or so we will get to have some very limited play dates. All this to keep away any chances of Jude getting sick until his WBC can start to be at a normal level again.
People have been so amazing to us. People are praying, on their on and even gathering in groups. Our fridge has been filled, work is being done on our house to make it a safer environment for Jude, Meals are going to be brought, we have been given balloons, toys, blankets, cards, goodie baskets, gift cards, monetary donations, offers for photo sessions, plans are being made for fund raisers, friends and family have taken care of Titus and our dog, people have picked us up random things from the store. So Many things I cant even count, so many people have decided to carry this load with us.
This is a bit all over the place, but I just wanted to get some things down that I was thinking about and wanted to remember.
A week ago saturday my family was having a cook out at my grandparents, and I mentioned the bruising. That along with the fact that my childs new favorite food was dirt made us all feel it was probably due to the lack of iron and we made sure Jude ate a hamburger that night and made plans to have more red meat in his diet(we eat alot of deer, but not much beef).
That night Jude started running a fever around 101 with no other symptoms. Sunday we celebrated Ty's birthday and his fever was around 100, still no other symptoms. I took him with me Monday morning to our MOPS group, we were having a special day and I was suppossed to lead a craft. We got everything set up and i was hoping Jude would just hang out in the class with me, but he was not feeling great and getting pretty grumpy. All the ladies assured me they had everything under control and told me to take that poor baby home.
Monday evening we ate cake at my moms to celebrate her birthday, his fever was just under 100 and my mom noticed he was looking kinda pale, my mind jumped again, Leukemia, but once again I worked hard to assure myself he was fine, he was just pale from the fever. Ty and I decided if he still had a fever we would take him to the doctor tuesday.
It had been a while since I got up and spent some time with God in the morning. Tuesday morning I believe the Lord woke me and gave me energy to meet with him. He is so good and knew what the day held even though I had no idea. I meditated on Psalm 3 and the verse "Salvation Belongs to the Lord" stuck with me. It was a beautiful start to a day I would never forget.
Jude's fever was 99.5 tuesday, we decided to give it one more day, but there was this other symptom that was bugging me. Jude had a few red blood dots by his eye, behind his ear and on his neck. I had not allowed myself to google anything about the bruising over the past weeks, the internet can make you believe you have anything, but I finally decided I would research thse dots. The reasons for them didnt seem to apply to Jude, then there was the phrase, possibly linked to cancer. I decided it wouldnt hurt to give the nurse a call, share the bruising, paleness, dots and fever, all just to ease my mind. She said we should come in right away.
I had a feeling blood might be drawn so I got jenn(and kathryn) to watch Titus so I could just focus on Jude and what the doctor might say.
They got us back within 10 minutes at the doctor and about 10 minutes later dr. bardi had us back out the door going to the hospital for some blood to be drawn. He assured us we would have results in about 30 minutes but didnt really say what he thought was going on. We got our blood work done and went to the store to get Jude a sucker for doing so well with the doc. The whole time we were going to doc and getting lab work Jude wanted to be held and seemed very tired.
About 15 minutes after the bloodwork, we were checking out at the store with a sucker and special drink and the doctor called.
He said it looks like Leukemia. I sat on the curb outside the store and cried as my sweet little Jude kept flashing me his beautiful little smile. The doctor said he was calling a doctor in Columbia and would call me back.
I made the call to Ty and he left work to come pick us up at the store, I couldn't drive. By the time he got to us I had already heard back from the doctor. The Doctor in Columbia wanted us to go right away to Carolinas so they could transport us to the Palmetto Health Children's Hospital in Columbia. By this point Jude was so exhausted and starting to fall asleep. Ty rushed us to the ER where they were expecting us and they immediately started working on him.
The Children's Hospital had sent out an ambulance with a pediatric team to come pick us up. Ty, my mom and I rode on the Ambulance with Jude to the hospital where he was immediately admitted into the PICU.
There we were met by an amazing team of doctors, nurses, child life specialists, and many others all waiting for Jude to arrive. They began giving him toys to comfort him and working on him right away and explaining to us what was going on and the action plan. We found that his Hemoglobin or red blood cells were about 1/4 of what they should be. This is why he was so exhausted. His white blood cells totalled 250,000, I believe the normal range is about 4000-11000. These were not good white blood cells, they were the leukemia cells, or mutated white blood cells. They were taking over all the space in the blood and not protecting the body as white blood cells should.
Jude spent a few nights in the PICU as the nurses and doctors worked hard to get his counts in a better range. He multiple blood and platelette transfusions and other procedures, we just kept signing papers to allow the doctors to work on him and make him well.
He started Chemo one day after we found out he had Leukemia. The Chemo knocks out the white blood cells, in an effort to get them to come back the way they should. Each day his WBC seemed to cut in half. All the scenarios the doctors shared with us went for the good in Jude. His little body was fighting and God's hand was/is all over him.
We had so many people praying and joining with us, the diagnosis was overwhelming, but God was moving.
Jude had to have a port put in his chest so that his chemo could easily be administered. He will have this for the next 3 years to receive his treatments.
Once again, when we came in his WBC was 250000, but when they let us go home today his count was 200, this is way below the normal range. This is part of the chemo plan, but because of this Jude has no way to fight infections or even defend itself against normal everyday germs we dont even notice.
This week has been Surreal. Today, Monday May 7th, Ty and I celebrate 7 years of marriage. We also celebrated our son getting to come home from the hospital one week after his diagnosis. For the next 3 months we will go once a week for treatments, they will share with us more details later. They didnt want to give us to much to deal with at once.
I feel moments of knowing God is in control and taking care of my baby and that he is going to fine. Moments of feeling unable to tackle the task of caring for this boy that I love so dearly. Moments of feeling this just cant be real. Moments of faith, moments of panic. I feel composed then completely unable to control the tears.
When we left the hospital today I had a bit of a breakdown, I didnt want to leave, I cried, nearly threw up and pretty much had a fit. But here we are at home, well my moms, home for the next week while some work happens at our house. Jude is asleep in his bed and I'm trying to resist the urge to go check his forehead once again to make sure there is no fever. Any normal thing a kid may go to the pediatrician for or just take some motrin for is likely a reason for a 2 day minimum stay in the hospital for Jude. For this first month we will have no visitors besides specific people who have trained with us to care for Jude and very few family members. No kids at all but Titus. The doctor said that for the next 6 months or so Jude will not be in a class setting with other kids at all. In a month or so we will get to have some very limited play dates. All this to keep away any chances of Jude getting sick until his WBC can start to be at a normal level again.
People have been so amazing to us. People are praying, on their on and even gathering in groups. Our fridge has been filled, work is being done on our house to make it a safer environment for Jude, Meals are going to be brought, we have been given balloons, toys, blankets, cards, goodie baskets, gift cards, monetary donations, offers for photo sessions, plans are being made for fund raisers, friends and family have taken care of Titus and our dog, people have picked us up random things from the store. So Many things I cant even count, so many people have decided to carry this load with us.
This is a bit all over the place, but I just wanted to get some things down that I was thinking about and wanted to remember.
Wednesday, November 9, 2011
My life, my choices
I'm so grateful today for the reminder that where I am today is for the most part a result of my choices. The everyday little details of my life I get to choose. There are times I find I'm not pleased with something and want to complain but as I truly think about it, I was the one who chose it.
From my wardrobe to the messiness of my car, I chose them. The precious time missed with my children exploring because i wanted to watch a show that will have no lasting impact on my life, I chose it. Seeing our eating out budget for the month triple because I didn't want to cook; money being tighter than it had to be, I chose it. The 10 lbs I just couldnt seem to get rid of before baby #3 came around, I chose it.
I'm definitely not trying to be a downer on myself. I'm completely thrilled with this revelation. I have always struggled with discipline and have always been left wanting for what I was unwilling to do. Another blog I love to read Money saving mom, has posted this quote 2x's this week.
Discipline is doing what you know needs to be done, even if you don't want to do it.
Crystal also said "I am the problem but I am also the solution". So true!!
I worked on a list of things that I feel are important for me to accomplish each day/week. I have a list of about 15 things, but I plan to narrow it to about 5 and work on adding the others in a few at a time. These are not some far-fetched goals, but things that I have been letting fall through the cracks. I'm gonna work on posting my 5 for the next few weeks and update on here how I am doing.
From my wardrobe to the messiness of my car, I chose them. The precious time missed with my children exploring because i wanted to watch a show that will have no lasting impact on my life, I chose it. Seeing our eating out budget for the month triple because I didn't want to cook; money being tighter than it had to be, I chose it. The 10 lbs I just couldnt seem to get rid of before baby #3 came around, I chose it.
I'm definitely not trying to be a downer on myself. I'm completely thrilled with this revelation. I have always struggled with discipline and have always been left wanting for what I was unwilling to do. Another blog I love to read Money saving mom, has posted this quote 2x's this week.
Discipline is doing what you know needs to be done, even if you don't want to do it.
Crystal also said "I am the problem but I am also the solution". So true!!
I worked on a list of things that I feel are important for me to accomplish each day/week. I have a list of about 15 things, but I plan to narrow it to about 5 and work on adding the others in a few at a time. These are not some far-fetched goals, but things that I have been letting fall through the cracks. I'm gonna work on posting my 5 for the next few weeks and update on here how I am doing.
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