2007 is coming to a close and 2008 is just a few breaths away. How quickly the time passes and how grateful I am for every minute! My ALS (Lou Gehrig’s Disease) is very slow-progressing and I am still able to type, eat, walk and drive (although all with decreased efficiency). The life-expectancy for ALS is 3-5 years. I have had symptoms for more than 3 years and am definitely in the slow-progression group (10% of people with ALS live more than 10 years…that’s what I’m shooting for!!)
I tried, unsuccessfully, to just “wish” this letter into existence but, alas, here I sit on December 20th writing! You would think that, being “retired” that I would have so much time to do things like this it would be no problem…but nooooooo, I manage to find enough stuff to do to fill up my days and still leave a sizeable collection on my “To Do” list!
2007 has been a good year, full of joy. I am truly blessed! I will have all three kids here with me for a week between Christmas and New Years! I can’t wait!!!
Catherine, 22, is in graduate school, majoring in Creative Writing. She graduated with a BA in English from Anderson University in May of 2007. She is adapting to life several hours from home much better than her mother is adapting to her being there!!! The most difficult thing for her is not being able to drive…she is dependent on others for errands, etc. She is involved in several on-campus ministries there at Indiana State University and she is blessed to have found a caring group of friends there who do what they can to help her when she needs something.
In August 2007, Catherine and I were given a 7-day Eastern Caribbean cruise! A friend of mine from Florida who also has ALS took his family and asked me and a “friend” to join them. Catherine and I had a WONDERFUL time! Neither of us had ever been on a cruise before so we had no idea what to expect. Needless to say, we loved it and are totally “sold” on the cruise concept! We sailed aboard the “Carnival Glory” out of Cape Canaveral and visited Cozumel, Belize, Costa Maya and Nassau. What a trip!
Phillip is 20 and is in an autism program at Highland High School in Anderson. In August 2006, he went to live with his father and step-mother, Kimberly, in Anderson. He has thrived there. Kimberly’s three children (one, a sophomore in college, one, a senior in HS and the youngest, a sophomore in HS) have accepted Phillip as their brother and have been a positive “normal kid” influence on him. I miss him terribly, though. He calls and talks to Amy on the phone almost every night, but because my speech is slurred I don’t use the phone …so I usually just listen-in. It is always great to hear his voice and to know that he is happy and healthy there at his dad’s.
Christopher is home-schooled for the second year and it is proving to be an outstanding choice for him academically. Due to his immune deficiency, he was out sick so much in public school that his academic progress suffered. Now he is sick much less often and we are able to work around it when he is ill. He is doing grade-level work or above in all areas except math. I am very proud of him. He continues to be the most loving and cuddly child I’ve ever known and we enjoy him so very much! He still loves all-things fire and EMS related but has grown to enjoy a much wider range of activities in the past year. He is reading books like “The Chronicles of Narnia” and loves all things “Disney”, especially Mickey Mouse! For the first time in his life his room is not decorated in “firefighter” motif, but instead it is the Mickey Mouse room!
Speaking of rooms, we are still in the process of decorating our house. We moved from a two-story home in Fishers (IN) to a single-story cottage in Muncie (IN) in July 2007. Our new home is cozy and inviting and we just love it! There are hard-wood floors in most of the rooms (we are just beginning to remove carpet), oak molding around all the doors and windows and a beautiful wood ceiling in the eat-in kitchen. Both bathrooms have tile floors and my bathroom is wide and has a step-in shower that is very accessible. Amy’s room has been painted from the original lavender to a beautiful green and cream. Next we plan to paint a little in the living room and then attack the kitchen (currently the wallpaper and paint are not our taste at ALL).
Our big event for 2007 came earlier this month when we spent a week at Walt Disney World with the help of “The Dream Foundation” (a wish-granting organization for terminally-ill adults). It was a Magical time! Sharyll (Martin) went with Amy, Christopher and me and we were able to stay on Disney property, which was a huge benefit given that both Christopher and myself use wheelchairs for long jaunts now. We spent most of our time in the Magic Kingdom and Epcot. Christopher’s favorite thing was just meeting the characters and we did a LOT of that! We tried two attractions… the first went OK (Christopher cried but said he wanted to stay for the entire show) but the second (The Many Adventures of Winnie the Pooh) was a disaster (who would have thought that Pooh would be scary!?! Well, not us…but the ride got dark and that was the beginning of the end). Christopher had a full-blown meltdown coming off the ride, but in true “Disney Magic” form, there just happened to be a “Dream Sqad” member there who immediately ushered us into a corner of the gift shop, sat down, spoke calmly and kindly to Christopher and presented him with a certificate signed by Winnie the Pooh, Tigger, and friends! This angel (and I have no doubt that she was) then escorted us through the park (the 3PM parade was about to start…the crowds were thick and the streets were blocked off but a little “pixie dust” paved the way) to the “Wishes Lounge” (a lounge that we had no idea existed…a place especially for families on “wish” trips). There we were able to re-group while Christopher laid on a large body-sized floor cushion and watched a DVD. Our Dream Squad angel then left, only to return a few minutes later with a Pluto plush toy for Christopher!
Another very Magical moment happened when we were just entering the Magic Kingdom one day and a cast member (another Dream Sqad member) approached us and asked us what our dream for our trip was. I answered, “To make memories for my son” and explained my ALS. She arranged for us to have a private meet-and-greet photo-session with Cinderella!!! On the way in to meet Cinderella we had to pass “Dopey” who was meeting people on the sidewalk. Christopher wanted to meet him (but we had a very important “date”!). Our Dream Squad cast member heard Christopher say he wanted to meet Dopey and lo, and behold, after meeting with Her Royal Highness, she invited her “special friend” Dopey to join us in the room…and we had a private meet-and-greet with him too! We got a gazillion pictures there alone (we have more than 600 photos total from the trip). They gave us a certificate for a 5”x 7” photo and gave us a frame that says “Magical Memories of a Magical Day”! Everyone in the room was in tears when we left. What a memory they made for us! I could go on and on, but in spite of Christopher’s fears (no more attractions and freaked-out by fireworks) we had a truly Magical time!
I am doing well. As I said I am still able to do most things although I tire more easily and cannot talk on the phone at all. I am on BiPAP at night to support my breathing. This fall I was found to have an immune deficiency of my own (I was diagnosed with a problem before I had Christopher, but it improved after I gave birth). I am now getting intravenous gammaglobulin once a month to protect against the #1 killer of ALS patients: pneumonia! The infusions are easy. I spend a few hours in the outpatient oncology area at Ball Hospital and I’m on my way. I am grateful to modern medicine!
I have been so amazed at the generous providence of God these past 15 months since I quit working. He has not only miraculously supplied our needs but He has given to us above and beyond…”[in] good measure, pressed down, shaken together and running over” (Luke 6:38)..
I’ve been blessed in so many ways as a direct result of my ALS. While some people who I had confided in and thought of as close friends have vanished, other people, some of whom I’ve never met, have stepped up and are supporting me in ways that only God can know the fullness of.
I am learning every day more fully what it means to have the joy of the Lord…even in the face of things that don’t make me very “happy”. My prayer for each of you is that you could come to know this peace and joy that I have found. As the saying goes, “No Jesus. No Peace. Know Jesus. Know Peace.” Those words are ringing true today in my life like never before.
May you have His Peace this Christmas as you celebrate His miraculous birth, as well as throughout the year to come.
All my love,
Claudia
I tried, unsuccessfully, to just “wish” this letter into existence but, alas, here I sit on December 20th writing! You would think that, being “retired” that I would have so much time to do things like this it would be no problem…but nooooooo, I manage to find enough stuff to do to fill up my days and still leave a sizeable collection on my “To Do” list!
2007 has been a good year, full of joy. I am truly blessed! I will have all three kids here with me for a week between Christmas and New Years! I can’t wait!!!
Catherine, 22, is in graduate school, majoring in Creative Writing. She graduated with a BA in English from Anderson University in May of 2007. She is adapting to life several hours from home much better than her mother is adapting to her being there!!! The most difficult thing for her is not being able to drive…she is dependent on others for errands, etc. She is involved in several on-campus ministries there at Indiana State University and she is blessed to have found a caring group of friends there who do what they can to help her when she needs something.
In August 2007, Catherine and I were given a 7-day Eastern Caribbean cruise! A friend of mine from Florida who also has ALS took his family and asked me and a “friend” to join them. Catherine and I had a WONDERFUL time! Neither of us had ever been on a cruise before so we had no idea what to expect. Needless to say, we loved it and are totally “sold” on the cruise concept! We sailed aboard the “Carnival Glory” out of Cape Canaveral and visited Cozumel, Belize, Costa Maya and Nassau. What a trip!
Phillip is 20 and is in an autism program at Highland High School in Anderson. In August 2006, he went to live with his father and step-mother, Kimberly, in Anderson. He has thrived there. Kimberly’s three children (one, a sophomore in college, one, a senior in HS and the youngest, a sophomore in HS) have accepted Phillip as their brother and have been a positive “normal kid” influence on him. I miss him terribly, though. He calls and talks to Amy on the phone almost every night, but because my speech is slurred I don’t use the phone …so I usually just listen-in. It is always great to hear his voice and to know that he is happy and healthy there at his dad’s.
Christopher is home-schooled for the second year and it is proving to be an outstanding choice for him academically. Due to his immune deficiency, he was out sick so much in public school that his academic progress suffered. Now he is sick much less often and we are able to work around it when he is ill. He is doing grade-level work or above in all areas except math. I am very proud of him. He continues to be the most loving and cuddly child I’ve ever known and we enjoy him so very much! He still loves all-things fire and EMS related but has grown to enjoy a much wider range of activities in the past year. He is reading books like “The Chronicles of Narnia” and loves all things “Disney”, especially Mickey Mouse! For the first time in his life his room is not decorated in “firefighter” motif, but instead it is the Mickey Mouse room!
Speaking of rooms, we are still in the process of decorating our house. We moved from a two-story home in Fishers (IN) to a single-story cottage in Muncie (IN) in July 2007. Our new home is cozy and inviting and we just love it! There are hard-wood floors in most of the rooms (we are just beginning to remove carpet), oak molding around all the doors and windows and a beautiful wood ceiling in the eat-in kitchen. Both bathrooms have tile floors and my bathroom is wide and has a step-in shower that is very accessible. Amy’s room has been painted from the original lavender to a beautiful green and cream. Next we plan to paint a little in the living room and then attack the kitchen (currently the wallpaper and paint are not our taste at ALL).
Our big event for 2007 came earlier this month when we spent a week at Walt Disney World with the help of “The Dream Foundation” (a wish-granting organization for terminally-ill adults). It was a Magical time! Sharyll (Martin) went with Amy, Christopher and me and we were able to stay on Disney property, which was a huge benefit given that both Christopher and myself use wheelchairs for long jaunts now. We spent most of our time in the Magic Kingdom and Epcot. Christopher’s favorite thing was just meeting the characters and we did a LOT of that! We tried two attractions… the first went OK (Christopher cried but said he wanted to stay for the entire show) but the second (The Many Adventures of Winnie the Pooh) was a disaster (who would have thought that Pooh would be scary!?! Well, not us…but the ride got dark and that was the beginning of the end). Christopher had a full-blown meltdown coming off the ride, but in true “Disney Magic” form, there just happened to be a “Dream Sqad” member there who immediately ushered us into a corner of the gift shop, sat down, spoke calmly and kindly to Christopher and presented him with a certificate signed by Winnie the Pooh, Tigger, and friends! This angel (and I have no doubt that she was) then escorted us through the park (the 3PM parade was about to start…the crowds were thick and the streets were blocked off but a little “pixie dust” paved the way) to the “Wishes Lounge” (a lounge that we had no idea existed…a place especially for families on “wish” trips). There we were able to re-group while Christopher laid on a large body-sized floor cushion and watched a DVD. Our Dream Squad angel then left, only to return a few minutes later with a Pluto plush toy for Christopher!
Another very Magical moment happened when we were just entering the Magic Kingdom one day and a cast member (another Dream Sqad member) approached us and asked us what our dream for our trip was. I answered, “To make memories for my son” and explained my ALS. She arranged for us to have a private meet-and-greet photo-session with Cinderella!!! On the way in to meet Cinderella we had to pass “Dopey” who was meeting people on the sidewalk. Christopher wanted to meet him (but we had a very important “date”!). Our Dream Squad cast member heard Christopher say he wanted to meet Dopey and lo, and behold, after meeting with Her Royal Highness, she invited her “special friend” Dopey to join us in the room…and we had a private meet-and-greet with him too! We got a gazillion pictures there alone (we have more than 600 photos total from the trip). They gave us a certificate for a 5”x 7” photo and gave us a frame that says “Magical Memories of a Magical Day”! Everyone in the room was in tears when we left. What a memory they made for us! I could go on and on, but in spite of Christopher’s fears (no more attractions and freaked-out by fireworks) we had a truly Magical time!
I am doing well. As I said I am still able to do most things although I tire more easily and cannot talk on the phone at all. I am on BiPAP at night to support my breathing. This fall I was found to have an immune deficiency of my own (I was diagnosed with a problem before I had Christopher, but it improved after I gave birth). I am now getting intravenous gammaglobulin once a month to protect against the #1 killer of ALS patients: pneumonia! The infusions are easy. I spend a few hours in the outpatient oncology area at Ball Hospital and I’m on my way. I am grateful to modern medicine!
I have been so amazed at the generous providence of God these past 15 months since I quit working. He has not only miraculously supplied our needs but He has given to us above and beyond…”[in] good measure, pressed down, shaken together and running over” (Luke 6:38)..
I’ve been blessed in so many ways as a direct result of my ALS. While some people who I had confided in and thought of as close friends have vanished, other people, some of whom I’ve never met, have stepped up and are supporting me in ways that only God can know the fullness of.
I am learning every day more fully what it means to have the joy of the Lord…even in the face of things that don’t make me very “happy”. My prayer for each of you is that you could come to know this peace and joy that I have found. As the saying goes, “No Jesus. No Peace. Know Jesus. Know Peace.” Those words are ringing true today in my life like never before.
May you have His Peace this Christmas as you celebrate His miraculous birth, as well as throughout the year to come.
All my love,
Claudia
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