I have never been one to graciously help another. I don't volunteer at the hospital. I don't offer to watch other people's children. When a fellow member of my community is in need of help I will almost always bury my head in the sand until the need of help passes. I try and excuse my behavior by saying I am too busy with 4 children, or too busy with Sarah's medical needs, or too busy with homeschooling, etc...but what message is this sending my children? A bad one.
I have been reading the Bible everyday and also reading this amazing serious of Joshua books by Joseph Girzone. Both the Bible and the Joshua book series talk often of serving others. Of helping those less fortunate than yourself or of helping those in need. I didn't realize this before (or maybe I didn't want to), but it is my duty as a human being to help others in need. And it is my duty to not only explain to my children that helping those in need is a must, but to also show them how to help others. So often we are so "busy" with our lives that we do not take the time to help anyone else unless it serves us some purpose. Unless we get something out of it. At least that is the way that I certainly was.
I never took those pleas very seriously when someone reached out for help. I always took the approach that someone else would help. Someone less busy, with less children, with less responsibility. But, you know what? We are all busy and we all have a lot of responsibility and the number of children that we have has nothing to do with our ability to help others.
Or when I did help others I would let everyone I know that I was helping someone, so that I could get a pat on the back from all I told. That isn't what helping someone is about. Good works and deeds should be between me and God. Not between me and the whole world. I have been trying to find a way to help others for a bit of time now, and an opportunity fell into my lap today.
I explained to my children what we would be doing. I told them that while the job would not be much fun it would be very much appreciated by the recipient. We talked about why helping others is so beneficial. The kids did a great job helping out - the boys more so than the girls, but that is to be expected. The best part about the whole thing was that our help, even if only for a few hours, was appreciated so much.
And so, we will keep our eyes open from now on and look for ways to serve others. This is such an important lesson that my kids learn. Serving others seems to be fading away as we all lose ourselves in our technologies that keep us apart from one another. That is a shame.
We have been so blessed by those who have served us during our trials with Sarah. It is time to Pay It Forward.
Tuesday, May 13, 2014
Monday, May 12, 2014
Healthy Habits - Week 1 - My Ground Rules/Struggles/Successes
In trying to become more healthy I knew that there were several key things that would make this attempt successful. One of the biggest pieces of this success will be to keep a food, liquid, and exercise journal documenting all things consumed and all activities done in the name of better health.
In my food journal I label each day at the top and then have a special section where I keep track of how many 20oz (that is how big our glasses are) cups of water I drink each day. I have another section where I list what exercise I did for the day. Finally, I have then have a large section where I jot everything that enters my mouth that is not water (coffee, tea, etc...) and all food.
On the very first page of my food journal I have listed 10 rules for myself:
Rules for Success
Eat Vegan Foods Only
Have 3 Servings of Fruit Daily
Write Down All Exercise, Beverages, and Food Consumed Daily
Weigh In On Monday and Thursday
Forgive and Move On
Try For 5 Servings of Veggies Daily
Only Water, Hot Coffee, and Unsweetened Iced Tea to Drink
Work Up to 6 Days of Cardio & 2-3 Days of Weight Training
Be Proud of All Changes No Matter How Small
(Small Changes Added Together = Big Changes)
Goal: Lose Enough Weight That I Am Healthy and To Make These Changes Permanent
Successes for This Week:
- In 4 days I have Lost 3.5 lbs
- I exercised 3 out of 4 days
- I kept my food journal daily
Struggles for This Past Week:
- It was hard to remember to drink water
- It was hard to keep up with my food journal
- I forgot how much more work it takes to prepare healthy meals for myself.
-I couldn't resist one of my father-in-laws delicious homemade cinnamon muffins. (Definitely not vegan or healthy.)
Goals for the Upcoming Week:
- Keep up food journal.
- Keep exercising.
- Try to incorporate more water into my day.
Friday, May 9, 2014
Dots
P.S. Sarah is doing well. Her vision has not changed, but her spirits are soaring. I will take that any day. I am not sure that we will ever see the improvements that we were once hoping for, but sometimes it is those who cannot see that have the best vision of all. Plasmapheresis has given us a break from her steroids which is something that her little body so desperately needed. Last treatment is next Wednesday - keep her in your thoughts and prayers.
Thursday, May 8, 2014
A Year In Review
I wrote this post last year with so much hope and promise for the upcoming year. I am glad that I did not know then the heartbreak that was just around the corner. I am not sure if I would have survived if I had known.
This past year broke my heart. It hurt me so deeply that I sometimes, still, find myself rubbing my chest to try and comfort the ache that does not seem to dull, even with the passing of time. In fact, with the 1 year anniversary almost upon us of Sarah's diagnosis, I find that the ache is becoming more pronounced. I find myself tearing up at random times just thinking about how hard it has been. The uncertainty. The unknown.
This past year was like living life in a constant state of high alert. I felt (and still feel) like it is just one fire alarm after another with Sarah, and that the hope for life to get back to a new normal is a dream that will never come true. I don't know how I will manage if my life will be all about living in high alert constantly. That state of mind and body is completely exhausting.
I feel like I was able to focus on nothing other than Sarah and the ramifications of having a child with a serious illness. I feel like I was constantly running from one child to another trying to keep them out of crisis mode while trying to fight for good care for Sarah.
This past year proved to me time and time again how hard life can be. How unfair and unjust it is. How utterly heartbreaking it can be with no rhyme or reason. It proved to me that sometimes bad things happen to beautiful souls and that there is no explanation for that other than it is what it is.
This past year wasn't terrible all of the time. There were times of pure joy. Joy which I never would have appreciated had I not been through hell. I got to bring all 4 of my children home to homeschool them. I loved doing this, and it was (and still is) and honor to have them home with me. We have learned so much together as a family because of this adventure. Being together made Sarah's hospitalizations less difficult on us all - for this I am sure.
There were gifts that I was given this year too. The gift of Hope. Hope carried me through so many of my dark moments this past year. It also, at times, cut me deeply, especially when things did not go as I hoped them to. The gifts of Life and of Health were bestowed upon me this year. At least the knowledge of them as gifts were bestowed upon me. You see, I took Life for granted. I took Health for granted too. But, I know better now, and I do not see myself ever taking either for granted again. Because the fact of the matter is that none of us, not even the most pure among us - children, are guaranteed Health or Life. I hold those thoughts so close to my heart, and think about them often. Remembering these things is important to me because it enables me to remember to make each day count. That even the mundane of passing days has something important to teach me and should be respected.
I learned a lot this past year. I learned a lot about myself. I learned a lot about my children. I learned a lot about my husband. My children are these amazing souls that are resilient and beautiful and wonderful. I am so honored to be their mother. All of them have taught me so much this year. I learned that I am a warrior. That I will do whatever I feel is right and necessary to care for ALL of my children. I learned that my intuition is spot on and should be revered. It is not to be doubted. I learned that I am so much stronger than I ever imagined myself to be.
Something that surprised me this year, was that even though I am very strong, I still need to have faith in something bigger than myself. I still need someone to help me carry my load. I didn't think that I would ever want a relationship with God, but I do. I am not talking about the churchy church kind of relationship - although that doesn't mean that I won't go to church ever - it just means that in doing some reading, today's churches and religious denominations look at a lot different than what I think that God intended them to look like.
I learned that there is someone who ALWAYS has it worse than I do.
I learned to appreciate that even though things are bad they can always be worse.
I learned that it is okay to be sad, mad, scared, etc...because right now, yeah - our family does have it a bit worse than others. I just don't want to dwell in those places for too long because, again, someone else would give up a lot to be where we are at. Because to someone else our pain is nothing compared to theirs.
I learned that I have an amazing community of friends who would do anything for us. I learned how much I need those people and how much I love them. I learned that my children have an amazing group of best friends whom I adore.
I learned (again) that my family, both immediate and extended, are my rock. They are what keep me grounded and keep things real. They supported me when I was not able to support myself because I was so broken.
Now, out with the old - in with the new....
*********************************************************************************
I am 35 now. I just celebrated my birthday yesterday. All of my focus was on my family this past year, but this year I am going to dedicate to myself. My health is my priority this year. My physical, spiritual, emotional, and mental health are my main priorities. I am going to take care of myself because myself is all that I have. I don't get another body. I don't get a do over at life. The best thing that I can do for my children and husband is to care for myself.
I am not sure exactly what this is going to look like, but I have some ideas. I am going to change up my blog a bit, so that you can help me accomplish my goals. On each day I will post about a certain topic. This way, you know what is coming (sort of) and I know what to write about (sort of).
Monday - Weight Loss Central - I will post how much weight I have lost the previous week. What worked for me during the week prior. What didn't work for me. Exercise/Food thoughts (for me).
Tuesday - Parenting/Homemaking
Wednesday - Things that Inspire Me and/or Things I am thankful for
Thursday - Parenting/Homemaking
Friday - Family Menu / Food questions/ Recipes, etc...
Saturday - Nature/Gardening/Hiking
We'll try this format out - beginning on Monday and see how it goes. It might stink and I will just revert back to hairy carry way of blogging, but I thought it was worth it to try something different.
Thanks for hanging in there with me this past year. I know that it was kind of a depressing year. Blah! You, dear reader, helped carry me as well as my family and friends. You gave me a place to write and get out thoughts that I could not adequately get out otherwise. Thank you! Now, let's have a good year, okay?
This past year broke my heart. It hurt me so deeply that I sometimes, still, find myself rubbing my chest to try and comfort the ache that does not seem to dull, even with the passing of time. In fact, with the 1 year anniversary almost upon us of Sarah's diagnosis, I find that the ache is becoming more pronounced. I find myself tearing up at random times just thinking about how hard it has been. The uncertainty. The unknown.
This past year was like living life in a constant state of high alert. I felt (and still feel) like it is just one fire alarm after another with Sarah, and that the hope for life to get back to a new normal is a dream that will never come true. I don't know how I will manage if my life will be all about living in high alert constantly. That state of mind and body is completely exhausting.
I feel like I was able to focus on nothing other than Sarah and the ramifications of having a child with a serious illness. I feel like I was constantly running from one child to another trying to keep them out of crisis mode while trying to fight for good care for Sarah.
This past year proved to me time and time again how hard life can be. How unfair and unjust it is. How utterly heartbreaking it can be with no rhyme or reason. It proved to me that sometimes bad things happen to beautiful souls and that there is no explanation for that other than it is what it is.
This past year wasn't terrible all of the time. There were times of pure joy. Joy which I never would have appreciated had I not been through hell. I got to bring all 4 of my children home to homeschool them. I loved doing this, and it was (and still is) and honor to have them home with me. We have learned so much together as a family because of this adventure. Being together made Sarah's hospitalizations less difficult on us all - for this I am sure.
There were gifts that I was given this year too. The gift of Hope. Hope carried me through so many of my dark moments this past year. It also, at times, cut me deeply, especially when things did not go as I hoped them to. The gifts of Life and of Health were bestowed upon me this year. At least the knowledge of them as gifts were bestowed upon me. You see, I took Life for granted. I took Health for granted too. But, I know better now, and I do not see myself ever taking either for granted again. Because the fact of the matter is that none of us, not even the most pure among us - children, are guaranteed Health or Life. I hold those thoughts so close to my heart, and think about them often. Remembering these things is important to me because it enables me to remember to make each day count. That even the mundane of passing days has something important to teach me and should be respected.
I learned a lot this past year. I learned a lot about myself. I learned a lot about my children. I learned a lot about my husband. My children are these amazing souls that are resilient and beautiful and wonderful. I am so honored to be their mother. All of them have taught me so much this year. I learned that I am a warrior. That I will do whatever I feel is right and necessary to care for ALL of my children. I learned that my intuition is spot on and should be revered. It is not to be doubted. I learned that I am so much stronger than I ever imagined myself to be.
Something that surprised me this year, was that even though I am very strong, I still need to have faith in something bigger than myself. I still need someone to help me carry my load. I didn't think that I would ever want a relationship with God, but I do. I am not talking about the churchy church kind of relationship - although that doesn't mean that I won't go to church ever - it just means that in doing some reading, today's churches and religious denominations look at a lot different than what I think that God intended them to look like.
I learned that there is someone who ALWAYS has it worse than I do.
I learned to appreciate that even though things are bad they can always be worse.
I learned that it is okay to be sad, mad, scared, etc...because right now, yeah - our family does have it a bit worse than others. I just don't want to dwell in those places for too long because, again, someone else would give up a lot to be where we are at. Because to someone else our pain is nothing compared to theirs.
I learned that I have an amazing community of friends who would do anything for us. I learned how much I need those people and how much I love them. I learned that my children have an amazing group of best friends whom I adore.
I learned (again) that my family, both immediate and extended, are my rock. They are what keep me grounded and keep things real. They supported me when I was not able to support myself because I was so broken.
Now, out with the old - in with the new....
*********************************************************************************
I am 35 now. I just celebrated my birthday yesterday. All of my focus was on my family this past year, but this year I am going to dedicate to myself. My health is my priority this year. My physical, spiritual, emotional, and mental health are my main priorities. I am going to take care of myself because myself is all that I have. I don't get another body. I don't get a do over at life. The best thing that I can do for my children and husband is to care for myself.
I am not sure exactly what this is going to look like, but I have some ideas. I am going to change up my blog a bit, so that you can help me accomplish my goals. On each day I will post about a certain topic. This way, you know what is coming (sort of) and I know what to write about (sort of).
Monday - Weight Loss Central - I will post how much weight I have lost the previous week. What worked for me during the week prior. What didn't work for me. Exercise/Food thoughts (for me).
Tuesday - Parenting/Homemaking
Wednesday - Things that Inspire Me and/or Things I am thankful for
Thursday - Parenting/Homemaking
Friday - Family Menu / Food questions/ Recipes, etc...
Saturday - Nature/Gardening/Hiking
We'll try this format out - beginning on Monday and see how it goes. It might stink and I will just revert back to hairy carry way of blogging, but I thought it was worth it to try something different.
Thanks for hanging in there with me this past year. I know that it was kind of a depressing year. Blah! You, dear reader, helped carry me as well as my family and friends. You gave me a place to write and get out thoughts that I could not adequately get out otherwise. Thank you! Now, let's have a good year, okay?
Tuesday, May 6, 2014
A Birthday Celebration - Andy
Dear Andy,
Thank you for being such a wonderful young man, and not being too upset that your birthday was not as amazing as past birthday's have been. I know that you were pretty bummed that the places to play laser tag and ride go carts were closed. I am sorry that Sarah's treatment took a couple of hours longer than expected and that we did not get home until 2 pm. I hope you had fun playing video games with the kids and going to Grandpa's to shoot your BB gun. I hope dinner with the whole family at the Olive Garden was as fun as you wanted it to be and that your Oreo ice cream cake was as delicious as you thought it would be when you asked Dad and I do get that for you as your cake selection.
You are am absolutely AMAZING young man. I have said it a million times, but I will continue to say it until the day I die: you are my inspiration for so much of what I do. You have the sweetest demeanor. I admire the fact that you know who you are and aren't going to let anyone or anything sway your personal convictions. You remind me so much of my grandpa - and you know how I feel about him. You have all of his wonderful qualities, and I am truly blessed to have both of you in my life to be a beacon of light to me.
I know that this past year has been really hard on all of us., I am proud of how wonderful you have been in absorbing all that is happening to us and asking questions when you need to, but also helping out when Dad and I needed you to.
You have grown by leaps and bounds this past year. Your voice has changed - I sometimes think Dad is home when really it is the sound of your voice I hear. You are moving from a little boy to a young man, and I am so very honored to be able to walk beside you through this process of growing up.
I hope that you have an amazing upcoming year. I hope that it is everything that you imagine it to be. You are an amazing son, and I am so honored to be your mother.
I love you more than you will ever know.
Love,
Mom
Thank you for being such a wonderful young man, and not being too upset that your birthday was not as amazing as past birthday's have been. I know that you were pretty bummed that the places to play laser tag and ride go carts were closed. I am sorry that Sarah's treatment took a couple of hours longer than expected and that we did not get home until 2 pm. I hope you had fun playing video games with the kids and going to Grandpa's to shoot your BB gun. I hope dinner with the whole family at the Olive Garden was as fun as you wanted it to be and that your Oreo ice cream cake was as delicious as you thought it would be when you asked Dad and I do get that for you as your cake selection.
You are am absolutely AMAZING young man. I have said it a million times, but I will continue to say it until the day I die: you are my inspiration for so much of what I do. You have the sweetest demeanor. I admire the fact that you know who you are and aren't going to let anyone or anything sway your personal convictions. You remind me so much of my grandpa - and you know how I feel about him. You have all of his wonderful qualities, and I am truly blessed to have both of you in my life to be a beacon of light to me.
I know that this past year has been really hard on all of us., I am proud of how wonderful you have been in absorbing all that is happening to us and asking questions when you need to, but also helping out when Dad and I needed you to.
You have grown by leaps and bounds this past year. Your voice has changed - I sometimes think Dad is home when really it is the sound of your voice I hear. You are moving from a little boy to a young man, and I am so very honored to be able to walk beside you through this process of growing up.
I hope that you have an amazing upcoming year. I hope that it is everything that you imagine it to be. You are an amazing son, and I am so honored to be your mother.
I love you more than you will ever know.
Love,
Mom
Friday, May 2, 2014
Day 4 - A Day of Celebration
Bob sent me a text this morning to let me know that Sarah's surgery went well. Her central line is in place. I didn't realize that she was going to be put under general anesthesia for this procedure, but she was. She was in recovery the last time I heard from him and he was just about to be let in to see her. I hate to say it, but I am glad he is there with her instead of me. I have gone through that process of putting her under and being there when she wakes up before and I don't like it. It makes me so sad to see her little body lying there so helpless and groggy.
She will have one more treatment in the hospital, and then we are on an outpatient basis beginning on Monday.
Anyway, if everything goes as planned Sarah should be released around 4 pm today. We are planning on having a small celebration party for her with her immediate family. My kids are super excited that she is coming home. As long as she is up for it, visitors are more then welcome starting tomorrow. I know that being away is hard on her both physically and mentally, so seeing her friends / cousins would be very much appreciated.
Thanks for all of your thoughts and prayers.
She will have one more treatment in the hospital, and then we are on an outpatient basis beginning on Monday.
Anyway, if everything goes as planned Sarah should be released around 4 pm today. We are planning on having a small celebration party for her with her immediate family. My kids are super excited that she is coming home. As long as she is up for it, visitors are more then welcome starting tomorrow. I know that being away is hard on her both physically and mentally, so seeing her friends / cousins would be very much appreciated.
Thanks for all of your thoughts and prayers.
Thursday, May 1, 2014
Day 2 & 3
I have some great, great news!!!! Sarah gets to come home early!!! If her surgery goes well tomorrow to put in a central line either under her clavicle or in her neck (which ever they can get to) then she will under go her second plasmapheresis treatment in the hospital and then they will release her tomorrow afternoon. (She currently has a central line in her groin, but she cannot go home with that one, so that is why they are taking that one out and putting in a new one in her clavicle/neck.) She will have to undergo thrice weekly plasmapheresis sessions on an outpatient basis for the next two weeks, but she will be home when not there.
I am thankful that she gets to come home. I had no idea how we were going to make it through 15 days of hospitalization. 4 days of it will be enough for us.
Day 2 of her hospital stay went well. She received her first plasmapheresis treatment yesterday, and everything went smoothly. She also had a couple of eye tests to determine how much atrophy there on her optic nerves.
Sometime during the night last night her IV started to bug her when being flushed, but so far no blown line. The nurses are keeping a close eye on it though. I am nervous about it blowing tomorrow because she has to be put under sedation to receive her central line, and the nurses will use her current IV to administer her medicine. Hopefully, this will not be the case.
Day 3 was okay. She was restless today. We had to stay in our room for a good portion of the day waiting to meet with doctors, but we tried to make the best of our time by reading, doing crafts, playing board games, and doing school work. (She just loved that I brought her school work to the hospital - not!)
Tomorrow will be a waiting game for me. Bob is with Sarah tonight, and I am nervous wreck about her surgery. I don't want her to be in pain - I know that she most likely won't be - at least not while the surgery is going on, but still I don't want her to be hurting when she wakes up from her surgery either. The whole process makes me nervous. Her coming home with a tube sticking out her neck area makes me really nervous too.
Thank you to all who have reached out to me. I appreciate it. I have been so busy bouncing back and forth that I have not had much time to respond to you - please forgive me.
Thank you also for all of your prayers and well wishes. I believe that it was partly those thoughts and prayers that got her released early.
Tomorrow night will be an evening of celebration in our house. Our girl is coming home!
I am thankful that she gets to come home. I had no idea how we were going to make it through 15 days of hospitalization. 4 days of it will be enough for us.
Day 2 of her hospital stay went well. She received her first plasmapheresis treatment yesterday, and everything went smoothly. She also had a couple of eye tests to determine how much atrophy there on her optic nerves.
Sometime during the night last night her IV started to bug her when being flushed, but so far no blown line. The nurses are keeping a close eye on it though. I am nervous about it blowing tomorrow because she has to be put under sedation to receive her central line, and the nurses will use her current IV to administer her medicine. Hopefully, this will not be the case.
Day 3 was okay. She was restless today. We had to stay in our room for a good portion of the day waiting to meet with doctors, but we tried to make the best of our time by reading, doing crafts, playing board games, and doing school work. (She just loved that I brought her school work to the hospital - not!)
Tomorrow will be a waiting game for me. Bob is with Sarah tonight, and I am nervous wreck about her surgery. I don't want her to be in pain - I know that she most likely won't be - at least not while the surgery is going on, but still I don't want her to be hurting when she wakes up from her surgery either. The whole process makes me nervous. Her coming home with a tube sticking out her neck area makes me really nervous too.
Thank you to all who have reached out to me. I appreciate it. I have been so busy bouncing back and forth that I have not had much time to respond to you - please forgive me.
Thank you also for all of your prayers and well wishes. I believe that it was partly those thoughts and prayers that got her released early.
Tomorrow night will be an evening of celebration in our house. Our girl is coming home!
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