God gives us each a special set of unique personaility traits. Sure, some people have some of the same traits, but no one is exactly the same. I was thinking today after someone told me to "relax", "Hey! Wait a minute!I like me! God knows hat He is doing!" I am truly a Type A, ex-Army officer, high strung, perfectionist personality. Hubby will tell you that I don't relax. I don't. I am one of those people who has to work to relax. Relaxing doesn't come naturally to me.
I like myself and while my traits can be anoying from time to time, they serve my family well. God knew what He was doing! These traits that can sometimes be seen as a burden to have, quite literally, saved my boys' lives. In order to homeschool, one must pay attention to details and be organized. Today, I am thanking God for the gifts He has given me. Including my personailty traits. I am fearfully and wonderfully made as the Psalm proclaims. I do have to remind myself of that -- especially when I get down on myself about my own traits and wonder why it is God made me this way! All I have to do is to look at my boys and know that God had a plan for everything. he knew what gifts and talents I would need to take care of my boys' medial needs and my family. He is an awesome God!
Good thing I have a calendar, too. Until Tuesday I forgot that I had one appointment for the boys this week. One next week. Very exciting for us! We are using the time to catch up on school and enjoy not having to go to so many appointments.
Don't forget to thank God for all of your traits and talents. Please keep Jasmine and Brandon in your prayers. Jasmine is at home, going to clinic weekly post-transplant and Brandon is still in the hospital waiting for his new bone marrow cells to grow. Pray for engraftment, grow cells, grow!
Wednesday, April 7, 2010
Sunday, April 4, 2010
Easter Sunday
He is risen! Alleluia!
Happy Easter! This has been a very quiet Easter around here. S did well playing piano at church (he also sang) and M did a great job singing. Not bad after serving at the vigil mass last night. The vigil lasted two hours and 40 minutes. They got home just after 11:00pm and went straight to bed. Tomorrow will be our last day off for Easter. We're having friends over for an afternoon of fun and games. It seems like everyone goes back to school or work on Easter Monday, but since we didn't take any time off until Holy Thursday, we're taking tomorrow off, too! Then it will be back to work for us! Around the World Night will be here before you know it!
Fr. K always has good messages in his homilies. I think he has repeated himself a lot over the years, but he's retired, so he can do that! He likes to use acronyms to help people remember things. APA was today's. Jesus is Alive, Present and Active. I have to remember that when I'm not feeling Him with me! Which seems to be a lot lately. I rely on my intellectual knowedge to get me through those dry moments when I don't "feel" Him. As I was walking tonight (now that it is spring, I might get out to walk each day!) I was thinking about things. I have so much jumbled in my head. Do you ever have so much happen that the thoughts just go crazy in your head and you can never make any sense of any of them? That's wat my brain has been like for many months. Probably years, but it has been really bad thelast several months.
Trying to figure out what it is that God wants or what He is planning can be crazy-making. We all try to do it. I eventually give up, but for now, I am trying to make sense of this new diagnosis. That is what was running through my head as I walked long. Why two diseases? Why two uncurable diseases? What does this mean for their future? Too bad my thoughts didn't burn calories. I'd be really skinny if my thoughts could burn a few!
Then I was reminded that none of us knows what the future brings-- not even for our healthy children. What we DO know is that Jesus rose from the dead and that He is with us. We know that no matter what happens in this world, He has already won. While it is great to have answersand a name to call teh monster when they are having bad days, it doesn't change what we are dealing with!
We have a week without any appointments and I hope this means that we can catch up on school work and everything around the house. Maybe I will be able to get my thoughts sorted now that we have a little less chaos! Looking forward to spring, baseball and gardening. Just so glad to have a week without any appointments! Yeah!
Our friend Jasmine was able to go home from the hospital after 4 months! She will have to go back for weekly clinic visits. What a wonderful Easter blessing! Please keep praying for our friend, Brandon. He had hsi transplant last month and is still in the hospital.
Happy Easter! This has been a very quiet Easter around here. S did well playing piano at church (he also sang) and M did a great job singing. Not bad after serving at the vigil mass last night. The vigil lasted two hours and 40 minutes. They got home just after 11:00pm and went straight to bed. Tomorrow will be our last day off for Easter. We're having friends over for an afternoon of fun and games. It seems like everyone goes back to school or work on Easter Monday, but since we didn't take any time off until Holy Thursday, we're taking tomorrow off, too! Then it will be back to work for us! Around the World Night will be here before you know it!
Fr. K always has good messages in his homilies. I think he has repeated himself a lot over the years, but he's retired, so he can do that! He likes to use acronyms to help people remember things. APA was today's. Jesus is Alive, Present and Active. I have to remember that when I'm not feeling Him with me! Which seems to be a lot lately. I rely on my intellectual knowedge to get me through those dry moments when I don't "feel" Him. As I was walking tonight (now that it is spring, I might get out to walk each day!) I was thinking about things. I have so much jumbled in my head. Do you ever have so much happen that the thoughts just go crazy in your head and you can never make any sense of any of them? That's wat my brain has been like for many months. Probably years, but it has been really bad thelast several months.
Trying to figure out what it is that God wants or what He is planning can be crazy-making. We all try to do it. I eventually give up, but for now, I am trying to make sense of this new diagnosis. That is what was running through my head as I walked long. Why two diseases? Why two uncurable diseases? What does this mean for their future? Too bad my thoughts didn't burn calories. I'd be really skinny if my thoughts could burn a few!
Then I was reminded that none of us knows what the future brings-- not even for our healthy children. What we DO know is that Jesus rose from the dead and that He is with us. We know that no matter what happens in this world, He has already won. While it is great to have answersand a name to call teh monster when they are having bad days, it doesn't change what we are dealing with!
We have a week without any appointments and I hope this means that we can catch up on school work and everything around the house. Maybe I will be able to get my thoughts sorted now that we have a little less chaos! Looking forward to spring, baseball and gardening. Just so glad to have a week without any appointments! Yeah!
Our friend Jasmine was able to go home from the hospital after 4 months! She will have to go back for weekly clinic visits. What a wonderful Easter blessing! Please keep praying for our friend, Brandon. He had hsi transplant last month and is still in the hospital.
Saturday, April 3, 2010
Holy Saturday
We're preparing for the wonderful Easter celebration that begins at vigil Mass tonight. Hubby has the oldest out buying a pair of dress shoes for Easter. Their feet grow too fast! I'm busy boiling eggs, because even with the boys being older, a few of them still want to color Easter eggs.
We have lamb every Easter that we are able. Yum. I roast garlic in the oven and then mash it with fresh herbs. Coat the lamb with this and let it sit in the fridge overnight. It makes the best lamb ever! It really is simple to do. Simply put whole heads of garlic in a crock, drizzle with olive oil, cover and bake. Once it cools, I remove the cloves and mash them into the oil. Crush fresh rosemary and oregano with a mortar and pestle, add to the mix with a bit more garlic. Massage into the leg of lamb and let it sit overnight in the fridge (covered, of course).
We are also preparing our lamb shaped cake. One of my favorite cake pans! If you click on the "Easter Activities " label, you'll see where you can get the lamb shaped pan and also see some of our naturally dyed Easter Eggs from years past. We love to do neat things with our eggs, This year will be simple, though.
This Lenten season was very dry for me. I suspect it is because of many reasons. In the fall, we lost another unborn little one. Our 17th. Seeing the heartbeat and then having to be in the hospital just brought back so many memories of the many other losses. That coupled with getting the muscle biopsy results back just as Lent began, made it difficult to concentrate on Lent. Try as I might, this was just a difficult Lent to get through! We've had many Lenten seasons where we've gotten abnormal results, bad medical news, etc, but this one was just different. I think I hit a wall. My brain was already too full before we got this added diagnosis of Mitochondrial disease. I have no more compartments left! Trying to focus on Lent was exceedingly difficult as I waded through medical literature, learned about the new supplements and we worked on getting the boys to take the new "fish pills" as we call them. We tried the cherry flavored liquid version, which they hated even more! I am happy to report they are now taking the pills without a problem. Just an occasional scream from us to hurry up because the smell is taking over the kitchen! Even when we feel completely overwhelmed, God is with us. This Lent, I had to remind myself that Jesus felt every emotion we would ever feel and He knows our hearts. I may feel as if this Lenten season was not very productive for me, but I know He was still at work-- even when I don't see or "feel" it.
I realize we are completely and utterly blessed. The boys started some of hte Mito cocktail back in November after the muscle biopsy. After the results confirmed Mitochondrial disease, we started the prescription supplement called Levocarnitine. We have seen some positive results after being on the supplements for just over 4 months now. There is no cure for Mito. The only treatment available is high doses of vitamins and supplements. The FDA recently approved the first Mito drug, but it hasn't been studied in many Mito patients (my understanding here), but it does look promising.
J's swallowing has gotten better and we have noticed in the last few weeks he is less clumsy. He isn't tripping going UP the stairs or coming down. He still has some choking and aspirations, but not at every meal like he was before the Mito Cocktail. We are very thankful for these improvements. We have several things we wish for. One is that the government would allow us to deduct the cost of the supplements from our taxes. There is a bill in Congress to allow this. My beef is that we shouldn;t need Congress to tell us we can deduct it from our taxes! A doctor has prescribed these supplements and has checeked their blood levels and increased their dosages, etc. If a doctor prescribes it, we should be able to deduct it.
I'm back to preparing for Easter. I hope that you are all having a blessed Holy Saturday as you prepare for Easter Sunday. Something that I did reflect upon yesterday was that with every Good Friday in our lives, we always have an Easter Sunday.
We have lamb every Easter that we are able. Yum. I roast garlic in the oven and then mash it with fresh herbs. Coat the lamb with this and let it sit in the fridge overnight. It makes the best lamb ever! It really is simple to do. Simply put whole heads of garlic in a crock, drizzle with olive oil, cover and bake. Once it cools, I remove the cloves and mash them into the oil. Crush fresh rosemary and oregano with a mortar and pestle, add to the mix with a bit more garlic. Massage into the leg of lamb and let it sit overnight in the fridge (covered, of course).
We are also preparing our lamb shaped cake. One of my favorite cake pans! If you click on the "Easter Activities " label, you'll see where you can get the lamb shaped pan and also see some of our naturally dyed Easter Eggs from years past. We love to do neat things with our eggs, This year will be simple, though.
This Lenten season was very dry for me. I suspect it is because of many reasons. In the fall, we lost another unborn little one. Our 17th. Seeing the heartbeat and then having to be in the hospital just brought back so many memories of the many other losses. That coupled with getting the muscle biopsy results back just as Lent began, made it difficult to concentrate on Lent. Try as I might, this was just a difficult Lent to get through! We've had many Lenten seasons where we've gotten abnormal results, bad medical news, etc, but this one was just different. I think I hit a wall. My brain was already too full before we got this added diagnosis of Mitochondrial disease. I have no more compartments left! Trying to focus on Lent was exceedingly difficult as I waded through medical literature, learned about the new supplements and we worked on getting the boys to take the new "fish pills" as we call them. We tried the cherry flavored liquid version, which they hated even more! I am happy to report they are now taking the pills without a problem. Just an occasional scream from us to hurry up because the smell is taking over the kitchen! Even when we feel completely overwhelmed, God is with us. This Lent, I had to remind myself that Jesus felt every emotion we would ever feel and He knows our hearts. I may feel as if this Lenten season was not very productive for me, but I know He was still at work-- even when I don't see or "feel" it.
I realize we are completely and utterly blessed. The boys started some of hte Mito cocktail back in November after the muscle biopsy. After the results confirmed Mitochondrial disease, we started the prescription supplement called Levocarnitine. We have seen some positive results after being on the supplements for just over 4 months now. There is no cure for Mito. The only treatment available is high doses of vitamins and supplements. The FDA recently approved the first Mito drug, but it hasn't been studied in many Mito patients (my understanding here), but it does look promising.
J's swallowing has gotten better and we have noticed in the last few weeks he is less clumsy. He isn't tripping going UP the stairs or coming down. He still has some choking and aspirations, but not at every meal like he was before the Mito Cocktail. We are very thankful for these improvements. We have several things we wish for. One is that the government would allow us to deduct the cost of the supplements from our taxes. There is a bill in Congress to allow this. My beef is that we shouldn;t need Congress to tell us we can deduct it from our taxes! A doctor has prescribed these supplements and has checeked their blood levels and increased their dosages, etc. If a doctor prescribes it, we should be able to deduct it.
I'm back to preparing for Easter. I hope that you are all having a blessed Holy Saturday as you prepare for Easter Sunday. Something that I did reflect upon yesterday was that with every Good Friday in our lives, we always have an Easter Sunday.
iRosary Application for iPhone and iTouch free through Easter Sunday
If you have an iPhone or iTouch, the iRosary is free through tomorrow. They had a special during Holy Week and through Easter where it can be downloaded for free. The application is really neat and has wonderful graphics. As you scroll the rosary down the screen, the next prayer bead lights up with a cross and the words to the prayer show up on the screen. The iRosary applications tels yu which mysteries to pray for the day and also includes the Divine Mercy Chaplet and Loreto Litanies. A very nice application for the iPod!