For our Family it will be Christmas Eve today and the boys have been up since 6 am with excitement.
Count on our beautiful Home State Colorado to deliver a most wonderful snowfall just in time! We woke up to big flakes falling and our 'Mountain' covered under a white blanket ...
The Fireplace is running and Christmas Music is playing and everything seems just picture perfect :)
Of course there is always some hiccup and I still have to shake that fear each Christmas that climbs into my heart due to the memories of three years ago when Connor got sick. I am wondering if you all get tired to read the same each year now and if I will still type this in 10 years .....
There are hardly words for that cold feeling that goes into your heart and that makes you hurt to breath for just a few minutes when you remember that fear ... I still see myself on the floor in the bathroom crying as I had never cried before because I felt I was loosing my oldest son and could not stop it.
So once again for three years running I am the most grateful to the gift of the Christmas Angels that came into my life in the form of my dear friend Jennie Olson who was a solid friend with information about Autoimmune Diseases ...
Then there was the e-mail that guided me to a website called www.curejm.org. The Families at CureJM that gave me back hope but also a Book called Myositis and Me .... goodness that book can also put the fear in you but it has been a new kind of Bible and I am very very grateful for it!!!
and then of course the tip of the Mountain:
Dr. Stephen Smith (Neurology) _Colorado Springs
Dr. Lauren Pachman (Rheumatology)_CMH Chicago
Dr. Megan Curran (Rheumatology)_CMH Chicago
Dr. Jennifer Soep (Rheumatology)_TCH Denver/Aurora
I credit everyone of them as Connor's Guarding Angels who saved his life when I could not!
That and this alone is the only gift I ever ask for and need in my life, to see my children outgrow me!
Sadly, even on our Christmas Eve we had to make some adjustments for Connor to see a Doctor. I was hoping to clear the schedule and was able to cancel Therapy but he has been battling a very harsh dry cough for almost two months. It used to come and go and for the last two weeks it just goes on non stop. He has been seen by Dr. Maynard and he keeps telling us his lungs sound clear, he has no red throat, just irritated, clear nasal passage and ears. He has been put on Allergy Medication and Nasal Spray ... no success. He eats cough drops as if they were going out of business and he will cough while eating them!
I truly thought for this whole time it was him battling colds and not being a JM issue but when I ran out of answers I finally thought to ask my JM Family even if I sounded silly ....
NOT SO .... once again my JM Family came through in every way! After getting wonderful Feedback and Wisdom on the JM FB Page and getting a response in less then three minutes from Dr. Soep last night, Connor is now on his way to get an x-ray taken of his lungs and will have to see a pediatric pulmonologists on January 8th 2013. It sounds as this could indeed be JM related and just one more battle for him to fight.
I was grateful that Ron said he would take him in this morning as it has been snowing heavily and I was able to stay home with Alexander to help him finish some projects.
If you have been following this blog you also know very well that my stance with the Church has been not on an even keel for the last three years. Much of this had and has nothing to do with my believe in God or Jesus but with the way some Christians on Earth try to translate the Bible and scriptures that works against my belief in so many ways. I admit I take offense even when I read that 'God called Home all those children' that just died a horrid and meaning less death this past week. What kind of God do they know? My God does not 'call Home' innocent children because in my eyes he did not cause this tragedy. There will never ever be a time when I think the death of a child is justified .... that is just wrong and my God knows I am very mad at him at times for him not stopping this ... those conversations are between him and I and there is no Bible Verse or Scripture that will ever satisfy me that there is a reason and something good to come out of innocent people dying ....
Never less, I had an upbringing that included going to Church and I was also very set on having had the boys Baptized at age one in the same Church I was baptized as a baby and later had my Confirmation. So to give the boys their own choices in how they want to believe I am finding out I have to open that door for them.
I posted a msg about Christmas Eve Services I could take the boys to on December 24th and I got a huge response.
Count on our beautiful Home State Colorado to deliver a most wonderful snowfall just in time! We woke up to big flakes falling and our 'Mountain' covered under a white blanket ...
The Fireplace is running and Christmas Music is playing and everything seems just picture perfect :)
Of course there is always some hiccup and I still have to shake that fear each Christmas that climbs into my heart due to the memories of three years ago when Connor got sick. I am wondering if you all get tired to read the same each year now and if I will still type this in 10 years .....
There are hardly words for that cold feeling that goes into your heart and that makes you hurt to breath for just a few minutes when you remember that fear ... I still see myself on the floor in the bathroom crying as I had never cried before because I felt I was loosing my oldest son and could not stop it.
So once again for three years running I am the most grateful to the gift of the Christmas Angels that came into my life in the form of my dear friend Jennie Olson who was a solid friend with information about Autoimmune Diseases ...
Then there was the e-mail that guided me to a website called www.curejm.org. The Families at CureJM that gave me back hope but also a Book called Myositis and Me .... goodness that book can also put the fear in you but it has been a new kind of Bible and I am very very grateful for it!!!
and then of course the tip of the Mountain:
Dr. Stephen Smith (Neurology) _Colorado Springs
Dr. Lauren Pachman (Rheumatology)_CMH Chicago
Dr. Megan Curran (Rheumatology)_CMH Chicago
Dr. Jennifer Soep (Rheumatology)_TCH Denver/Aurora
I credit everyone of them as Connor's Guarding Angels who saved his life when I could not!
That and this alone is the only gift I ever ask for and need in my life, to see my children outgrow me!
Sadly, even on our Christmas Eve we had to make some adjustments for Connor to see a Doctor. I was hoping to clear the schedule and was able to cancel Therapy but he has been battling a very harsh dry cough for almost two months. It used to come and go and for the last two weeks it just goes on non stop. He has been seen by Dr. Maynard and he keeps telling us his lungs sound clear, he has no red throat, just irritated, clear nasal passage and ears. He has been put on Allergy Medication and Nasal Spray ... no success. He eats cough drops as if they were going out of business and he will cough while eating them!
I truly thought for this whole time it was him battling colds and not being a JM issue but when I ran out of answers I finally thought to ask my JM Family even if I sounded silly ....
NOT SO .... once again my JM Family came through in every way! After getting wonderful Feedback and Wisdom on the JM FB Page and getting a response in less then three minutes from Dr. Soep last night, Connor is now on his way to get an x-ray taken of his lungs and will have to see a pediatric pulmonologists on January 8th 2013. It sounds as this could indeed be JM related and just one more battle for him to fight.
I was grateful that Ron said he would take him in this morning as it has been snowing heavily and I was able to stay home with Alexander to help him finish some projects.
If you have been following this blog you also know very well that my stance with the Church has been not on an even keel for the last three years. Much of this had and has nothing to do with my believe in God or Jesus but with the way some Christians on Earth try to translate the Bible and scriptures that works against my belief in so many ways. I admit I take offense even when I read that 'God called Home all those children' that just died a horrid and meaning less death this past week. What kind of God do they know? My God does not 'call Home' innocent children because in my eyes he did not cause this tragedy. There will never ever be a time when I think the death of a child is justified .... that is just wrong and my God knows I am very mad at him at times for him not stopping this ... those conversations are between him and I and there is no Bible Verse or Scripture that will ever satisfy me that there is a reason and something good to come out of innocent people dying ....
Never less, I had an upbringing that included going to Church and I was also very set on having had the boys Baptized at age one in the same Church I was baptized as a baby and later had my Confirmation. So to give the boys their own choices in how they want to believe I am finding out I have to open that door for them.
I posted a msg about Christmas Eve Services I could take the boys to on December 24th and I got a huge response.
Right now I am jumping in all the way and the boys and I are invited to not just one Service but three!
We will start with a German Lutheran Service in Denver on the 23rd, then we are invited to join a Baptism and a Catholic Service on the 24th, followed by a Non Denominational Christmas Eve Service. All three will be with friends that we can join and which we truly look forward to. I have to admit I will be curious to see which one of the three services will speak to the boys the most :) Right now I am still laughing at the look my boys gave me when I told them what I set up ;)
As to tonight and with our Christmas Eve Traditions we had the boys pick a Christmas Song or Winter Song they want to sing. Every year up until now they chose to sing together one German and one American Song but this year they decided to have Connor sing a German Song and Alexander an American Song. We have been singing our way up and down the song books and I admit I had to stifle a laugh when I heard that Alexander's song he picked is 'I am dreaming of a white Christmas'! To hear his sweet voice sing ... 'just like the once I used to know ....' very cute from an 8 year old. Lucky for him he got his wish of a white Christmas ;)
I wish I could post pictures right now as truly looking out the window feels like a Postcard. Alexander is now outside playing in the snow and I am going to go outside to join him :)
Hugs,
R A C A
Many blessings to you and your family this Christmas, Anke!
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