Happy 5th Birthday Lyssie!!!

Happy 5th Birthday Lyssie. I'm headed to the beach so you can get your singing balloon. I know you wanted it because when I left the parking lot two little girls stopped me and asked for it. I think you wanted it then because the wind started and I almost lost it. I was going to make you wait til your real Birthday time but 11:36 pm is really late so I'm going now. I bought a plant for your mom mom and babe, sent the girls their bracelets. I picked most of the picts and recruited a stranger to do it and what a wonderful job she did. We didn't get daddy, Auntie Meg or your Ivy. I tagged them too but guess it didn't happen. I sent some secret angels out to your family. I hope you are having a blast in Heaven. We miss you here so much!!!!! It hasn't been easy without you here. I like you! I love you to infinity and beyond!!!!!

Why some people have it harder then others.

I read this a long time ago in a cb parent blog and was trying to remember exactly how it was written. She makes some good points and I look at each level of life. Like spirituality is one area of your life. You can be the top in one area of your life but weak in another. I look at life as a journey and lessons learned. So here goes this one mom's perspective on spirituality.Guess I'm not in kindergarten on this one. I do think it is good to always question in the spirituality realm. If I had just taken what I learned in Sunday school as truth then really would I have grown in my beliefs? It is about being open to all beliefs and what they believe. Learning as much as you can, having discussion, and an open mind toward what others believe. You take the lessons you learn through experience and you try to make the world a better place. I wouldn't take away anything I've gone through in life because it makes me and shapes me into who I am today. Here is a cool analogy on faith.


God showed me that if we could take a spool of white ribbon and paint the tip (approximately the size of your pinky fingernail) red, then take the spool and throw it, allowing it to go around and around the world, never ending. The tiny portion of red is our very short time on earth- the white, our eternity in paradise. I try to remind myself of this frequently, whenever I am going through something of great stress or pain. This is one of the things God revealed to me.
Earlier, I told you that I know why my sweet baby has cancer. I know why some of you have endurred much suffering, while others breeze through life with very little difficulty.
God showed me that this, our time on earth, is our education or school. We actually started off in Heaven (The Bible tells us that God knew us before we were even conceived in the womb- that's because we started out in Heaven!) And, when we graduate from "school" we will return to Heaven and recognize it as home!" Oh what a glorious day that will be!
That said, when you think back to your years of school, there was one thing that forced you to study. Without these, we surely would have procrastinated for things we found to be more pressing at that moment. Can you guess? (It was the tests!) When we had a test, we had to prioritize studying or risk the chance of failing.
The tests forced us to learn the material.
It works very much the same way in our spiritual education here on earth- it is the tests that take us to a higher level of wisdom quicker than anything else. Just as there are a multitude of children and adults receiving education from primary school to post-graduate, so there is with our spiritual education!
Our spirits are born of this earth, each being at a different level of education- some seem to be born with the perfect health, the perfect bodies, families, finances, marriage- everything seems so easy for them! This is because they are in "spiritual kindergarten" or "elementary school." Their tests can't be any harder than this in order for them to grow.
Likewise, there are those with more than their fair share of hardships. Their souls are so brilliant and beautiful that their tests MUST be harder in order for them to grow. Though this may sound hard to believe, a difficult journey is NOT a punishment from God. It is an honor. (If a teacher were to have pulled you from a sixth grade class to tell you that the school deemed you too intelligent for the sixth grade and wanted to bump you up to the ninth grade- most of you would have felt proud and honored, even if a little nervous about whether or not you could get through it.)
Think about this.... you wouldn't take a five year old and put him/her in college physics. The material/the tests would be far too difficult and the child would not grow.
Likewise, you would not take the genius and put him in kindergarten. The material/tests would be much too easy and the person wouldn't grow.
It works the same way in our "spiritual education." There are "kindergarten spirits" whose lives seem so easy. Their tests can be no harder than this in order to grow.
Then there are the spirits of the "advanced courses," those among us who have more than their fare share of difficulties and hardships, some beginning in childhood with parents who are less than loving. There are people who suffer with illness or injury, those whose loved ones die, those who suffer through divorce after the spouse they had loved for years was found to have been cheating, and those who suffer financial ruin in spite of working hard all of their lives. And then there are children with cancer.
God cautioned me to be careful who I judge! That the journey of a drunk, lying in his own squalor, has been so much more difficult than mine, is a testimony to the strength of his soul.
In my practice, I have had the honor of working with a very young clinical genius who was very upset. Twice a week, while his young peers were out playing at recess, he was working on algebra far beyond his years. He was angry, saying "Not fair, Ms Terri!"
Now, part of me felt sorry for him. He was so young and having to miss recess for extra tutoring. Yet, a stronger part of me was saying, "toughen up, your mind is so powerful, it requires more!"
And so it is with our spirits. My little, precious baby girl has the powerful soul of royalty. Her tests are so very difficult....I am in awe of her. More than this, I am so honored to be her mother.
Some of you have such powerful souls, that surely if your flesh could fall from your bones, I would need shades to bear the brilliance of your soul! Your journey is hard because you are in "physics" - it is hard because it has to be.

Something to think about where are you on your spiritual journey? Kindergarten? Physics? Somewhere in the middle? Open up discussion os the best method of learning and growing. Now to find a song Please don't be offended if it is Christ like.



Songs like this one wake people up to others. The world isn't supposed to be about me me me but serving and helping others despite your hardships other still need to be lifted up too. Sometimes I do expect more from others because I give so much more and I care so much more. I don't care if I go without so others needs can be met. It is never about me but helping others. We don't live in our own little world. You can chose not to click the links on fb because it's too hard but reality is that people's pain is still there you can chose to ignore and live in your own little world of me me me or feel others pain and help them through it. Remember somebody's always got it harder then you do.

Savannah Swandal [Angel Wings]

Posted this over a week ago. Actually it says May 8th. Update: Saw Ms. Lyssie last Sunday increase pain but she still smiles and laughs. Take those precious moments. I will!!!!

I'm listening to this song daily lately. Who was Savannah? Eleven year old girl with cancer. Strong, determined, fighter, loved the color lime green, loved by so many. She was sent home on hospice and died at her home surrounded by mom, dad, and baby brother Luke. Her 11th Birthday was at the beginning of February sent her a package with her bracelet in it. I'm loving all the work I'm doing for the www.colesfoundation.org . Yes, I keep up with many of these kids and have gotten to know the parents personally of many. Aaron, the founder of cole's have had some discussions lately and he asked me if I would do more work for the foundation. I'm honored just told him let me get through the brunch easter weekend.

Oh yea my family decided the week before Easter would be a good time to go on a family vacation to KY. My little sister, her mother-in-law, my brother-in-law, nephew, mom, and dad decided that since many of the relatives had never met my nephew or brother-in-law it was time to meet the family. At first when I figured out they would be gone for Easter I was sad. The fun things about Easter? Going to church with family and watching the excitement of my nephew on his second Easter. Plus the day before was my sister's birthday. Guess although stressful at times I still enjoy family get togethers. Maybe it isn't as important to the rest of my family because they all have a husband (other lives) and I don't. Maybe once I am married it won't be important. I guess loneliness as something to do with things. When I feel like I matter or can make a difference I will go all out. My idea on how to spend Easter was to give back. I chose the Barbara Bush Children's hospital(where Lyssie was treated.) I organized a brunch for the families. Lot's of work and a few hundred dollars later it was worth it. For these families going through so much to enjoy a brunch and time with their kids was wonderful. I learned a bit in the process too. Like Not only do I have trouble asking for my needs but asking for donations was very hard for me to do. Growing up I had no problem selling cookies, subs, fund raising etc but for some reason I was afraid of rejection. Something to investigate. I'm losing my voice for others. Why is it so hard to ask people to help others or help me? I even feel bad about my therapist sliding scale for me. Feel like I shouldn't take up her time. Feel like I should just be greatful enough that she sees me once a week. I think this is what happened with my drs. I guess I felt like it really didn't matter that I wasn't receiving quality of care because at least they were seeing me. Get it? I really hate being a charity case. Grrr If I could just get a full time job with benefits I wouldn't feel so bad. Anyways so the week before Easter was my vacation week and spent the day with my Lyssie, and then the days with Abby and company, drs apts etc. We did have a big Easter egg hunt lunch on Saturday. Four babies under two. How are we gonna top this? Over 200 hundred eggs. lol. I had made "baskets" for each kids. I did sand buckets with fun stuff in it. Rule was do not put anything in them that Abby could eat. After the brunch I headed up to Maine to get all the food donations and spent the night in the hotel. After the brunch was done came home feeling really yucky because it seemed after the brunch I was a sickie. Grrr Later went into sinus infection, lungs oh so fun!!! Still on exhaust.
I wish I could figure out a way to share some of my Lyssie pictures on here or some of the videos that have been made but not on youtube. Last weekend at this time I was very worried about my Lyssie. She wasn't doing well at all. Was showing signs of more pain. I know how tough Lyssie is so when she starts to talk about her owie you know it's bad. I started to worry that I wouldn't get to say goodbye when the end came. People can't see her when her anc is zero because it means she has no immunity and if she gets sick it could spell death. I want to ask Cindy if she can make sure I get to say goodbye. My thoughts ugh once she's dead the body isn't Lyssie anyway. They are going to cremate her. My thoughts sitting there holding Lyssie. Can't we just stop time? I wouldn't want a piece of her once she is dead. I just wanted the feeling of holding her in my arms to last forever. The above song reminds me that heaven is a wonderful place and all the other children ahead of Lyssie will be there for her.

I won't say I've had my doubts about the whole question of prayer and weather it works or not. At one point I questioned it. You know why pray if God already has everything written out in his plan book? He is the one that ultimately decides our time to go. We are placed on this earth for reasons and when we have accomplished our job then we are to go. Lyssie, like many children that have gone through childhood illness, tramua etc have much to teach those around. Everytime I get into my car I am constantly thinking of all the things people teach me. I am a teacher and in that role it is my job to teach my kids but really sometimes the kids teach us. Truth is Lyssie is a miracle! In September the Dr.s gave her six weeks to three months. I'm in AWE!!!! Thanking God for each day he gives this precious little girl. Thing is everybody's days could be up tomorrow. They just have advanced warning. They can give her the last wish, say their goodbyes etc. We never know when our time comes but when it does I want my life to have purpose and meaning. Giving like there is no tomorrow, spending precious memories with the ones I love, believing in hope and miracles, being taught and feeling the presence of GOD in my life. It is Lyssie and many others that teach me. I've been working on a living lyssie blog in my head it just hasn't hit the screen. Well some of it is saved but everyday I think of more. I want to live Lyssie's lessons.

Grey is for Brain tumor Awareness at this is the month of May!!!!

Lyssie Passover weekend!!! My Earthly Angel!!!!

Ha! She is wearing the hope shirt I sent in the mail and after taking this picture she put on the two dresses I brought with me.



I want to give her the World and show her what it means to be loved!



Because I can't take it all away. I can show her love!!! Thank you God for allowing Lyssie in my life.

Chrismas Card 2010

Happy 2011! I hope your 2010 was a learning experience. I just want to acknowledge that I know I'm late this year! I even debated if I should just get the cards out and sign them. To me that didn't sound too personal. I know when I receive a card it's nice to be thought of but when I get to see your kids on the card or hear about some things you did that year it is extra special. I have been trying to think of the best way to do my cards this year. The letter last year was a bit long and I do want to send something so my friends don't think I forgot them yet balance my time which I don't seem to have enough of these days. (I'm starting this at 2:00 am. Lol)

All in all looking back at the past year it was neither good or bad. I think my mind has experienced some shifting on the subject of life. It wasn't one thing in general but of course target events that in the end come together like a puzzle. Lately I have been thinking of how my life has been like a puzzle. Even how I go about putting a puzzle together is how my life thoughts have shifted. I have friends( a very good one in fact) that when a puzzle is put down in front of her face she is already into it, tackling it head on. She enjoys puzzles. I on the other hand cringe when a puzzle is put in front of me. This is not my idea of a good time. If life's puzzles would just leave me alone I would be more then grateful but avoidance doesn't get you around life's puzzles. Life's puzzles will happen to you weather or not you tackle it on or avoid it is up to you.

There are probably a dozen reasons during my teens years that I avoided different parts of my puzzles. My thoughts were I was told I'm not good at puzzles or this problem is too big too handle, or the denile that these pieces even existed. I tried to make up the perfect puzzle and even today I still struggle with some of that. I did get some things correct like earning my BA in psych and my Masters in Education but I sacrificed many things in my life to make the appearance that all was perfect in my life. I still struggle with trying to please people especially the parents but as I realize some of the deeper things in life I will hopefully come up with solutions to these pieces of the puzzle.



In the beginning of the year I would say that I was defiantly immersed in the small pieces of the puzzle. Just this was overwhelming enough. I couldn't see past the small things to even get an idea of what the whole picture is "supposed " to look like. This year has taught me so much. I am able to look back and see the reason why. This was the year when by the end of 2010 I could actually see things coming together again and seeing the signs that I was looking for all along. I can pin point some of these things for you events that happened or people I met during this year. If I could I'd even add songs and music because in my toughest of times and deepest of struggles music seems to express what words can't for me. There was literally a song that came on the radio at the right time and saved my life. If you are reading this on my blog I will actually add youtube clips in to introduce you to the music and songs that helped me out and continue to encourage me. Lucky you!



In the beginning of the year things were still looking pretty bleak. I was feeling like a failure and hating life because if living life without a purpose and struggling so hard with the food piece I just didn't feel like living. I was more just existing and what is existing when I was tired and I just felt it was painful to live through another day. It hurt to breath. I actually looked forward to night to escape from my mind when I could finally fall asleep. I also felt like I didn't matter if I lived. Nobody would miss me. I felt my family would rather have me dead or that I had already died to them. I'm defiantly invisible to them. Maybe this makes it easier for them not to have to deal with me but it also leads to a lonely place where I felt the world would be better off without me. A piece of me also felt that maybe my purpose in life was that God thought it was time for me to die. I really struggled with the religion piece for a while. I felt that maybe God was punishing me for leaving my job two years prior and moving back to New Hampshire. I thought this is the reason that I wasn't making progress with the job search and not making progress with my eating disorder. I figured well God has the power to help me change but I'm stuck and haven't seen progress in years. This isn't living so maybe I have already fulfilled what he wants and maybe I am supposed to die from my eating disorder. Well I'm glad to say that I'm still here so that wasn't the case. Sometimes it hurt to breath but I still took the next breath. One night was particually painful when this song came on from a radio station that I had listened to off and on.(Shout out to air 1 positive alternative!)(http://www.air1.com/) This song happened to come on at the right time and saved my life. Of course my friend's blog helped me refocus or redirect. Thanks Reilly! I really believe your blog gave me a purpose. You never know the seeds you sew.


Ha! So that part of the letter was written the first week of January since writing the snow has piled up and life continues. I have been meaning to finish this letter but haven't felt in the place to do it and my heart was doubting weather it was still important or if people really cared but since it's my February vacation. I decided to put it out there. I'm going to mention particular events that happened this year that impacted me to change or see the big picture. Maybe even some goals for the rest of this year. Note : Not resolutions just things to focus my energy on. LOL You can never learn too much from this journey called life. Right?

As I was saying during the first couple of months during the year I was really struggling with a purpose. I had this really scary dream that I was in a fatal accident right now the road from where I live. I was on a bus with many people that I knew. As soon as we had the accident I knew my injuries were fatal. I could tell. One of the girls I babysat as a kid and is now 18(am I old or what?) looked at me as she was leaving the bus and didn't want to go. I just looked at her and was like I'll be all right just go. Thing is the ambulance kept taking people away and helping them but I kept asking for help and they were like you have internal injuries you are going to die anyway. Grrr... Nobody listened to me. I was calling out for help and everyone was like why bother you are going to die anyway. This is a very scary dream to have. It took me a while to let go of the feeling of that one. I've always had the death fear but after that night mare I still have vivid flashbacks. Just explaining it gives me the creeps! I guess the thing I took out of this experience was how valuable you are in others lives. How much I value Emily and Abby, my friends 18 month old daughter. For the most part of 2010 I spent with my friend Lydia, and her daughter Abby. I have basically watched Abby grow up. At the time I spent much time worrying about where I was with my life and didn't realize the bond I had with Abby. I would do anything for her. Abby and Emily is what keeps me going.

The next big event in my life was one of my friend's husbands hung him self. I know I didn't do everything right. I tried to be there for her. Took time away from my college class I took this spring to be at the funeral. I had never met her before but talked to her on many occasions for years. I would try to ask her but didn't want to be intrusive. I worried about her falling a part. She had three kids under the age of 7. I really felt bad and tried to help but I guess I didn't do enough. It still hurts because I care and once I'm friends with someone I don't take it lightly. Through thick and thin right. Well the big picture on this one was it opened my eyes to how much a suicide can effect the family members and friends. I do still believe that in order for a person to get to that point they have to see no other way out for the pain to go away but how could I ever do that do anyone? It would be wrong for me to do something that drastic.


Another thing that has changed my perspective is that I have become really involved with the COLES foundation. (http://www.colesfoundation.com/)You are assigned sick children and you can adopt a child to pray for. Many of these children have been fighting cancer or other life threatening dieses. I have been involved with Make a Wish for years and was a Disney volunteer but this work is so rewarding. It's like a second job that I do at night since the death of my computer. I keep up with over a hundred kids. What these children go through on a daily basis is incredible. I see so much strength in these kids. It really puts your life in perspective. I was afraid to die until I watched how these children and parents went through the process. The faith journey is amazing and it really teaches you to value each and every moment. Life can be taken away so quickly so stop to enjoy the moment. Say yes to the extra minutes you have because you never know what will be your last. I have to say I have come far with the concept of death. I really feared dying since I was a child but now I still have some doubt but also a piece of understanding around it. Yes, death is unfair especially when it comes to children. Cancer and any other diesease that take away children I will fight for a cure. Every child should have the ability to grow up. I am trying to spread awareness for childhood cancer. There is actually a private group on facebook that I'm a part of. I pray for kids every night. It is sad when you can click 20 kids off the top of your head that died this year from cancer and six this week that are on hospice. I send random things in the mail, make bracelets and do what I can. One family in particular I have become really close to Lyssie about 2.5 hours away.






My kids at work send cards to her and I've made some visits. She's four and dying of a brain tumor. Time is so Precious and God does have his big plan but one big lesson I have learned is that it is not the what you have in your life it is the who you have in your life and to value time with each person. Right now I'm living for other people. In some respects I still don't see the big picture and if my time came to go today it would be o.k. Thing is that only God knows his plans for me. Until that time I must continue to care for others and GIVE back. My life isn't about me but for others.



In November of this year I started a part time job working as a title one interventionist. I take children from 11:30-3:00 and pull them out of class for extra reading and math groups. The town I'm teaching in isn't like the places I've taught before. The school doesn't have as much money and resources that most of the places I've taught at do. The children come from homes that the kids are just struggling to get by, or their parents need help. It's sad to see. You know what??? I value these kids so much. I would do anything to help them learn and if that means take on the extra roles of counselor, parent educator, social worker etc. I will do this for my kids. I consider them my kids. Once they are placed in my group I'm their advocate. Why don't they have this or maybe we should try that. I really miss my own classroom. I love the freedom of being able to teach with a more creative twist to the curriculum. Children get bored with lessons that came from a book. They can't relate. These kids are another reason for me getting up in the morning. I love the challenging kids the most. Especially my fourth and fifth graders. We get to have real life conversations and they get it. I'm keeping my fingers crossed that this gets my foot in the door for next year but again the district is cutting and there are so many highly qualified teachers not having their own classroom. Also the testing situation causes me anxiety because I know everyone in our school tries to do their best at teaching yet the school is in year four of the restructuring process for not making AYP. This is the point where all the teachers, principals can be fired in the school so the school is going with book based programs but I listened to the children complaining that the stories they are reading are things they can't relate to. I'm not sure if the teaching style has changed so much that you don't have the freedom to teach as I found before in the classroom. This has made me reconsider my career choice. Child life, which is working in the hospitals with children that have life threatening dieses. You explain to the children what procedures they will be going through, work with them, and some playing is involved. I like both and it would be a big career change and right now I want to afford getting out of my house. We'll see how that one turns out.

As far as treatment goes for my eating disorder. I did IOP in December before I came off the cobra insurance. It went really well with me taking risks but should have taken more. Regression is not a good thing. You know sometimes I'm convinced that my body doesn't need as much as others. Guess I'm trying to prove that I have no needs. Also I know to give my life up and not to be selfish. Some things just clicked for me this year. I think I know more about my issues and a lot of it is religion based. I was mad at God and doubted for a long time but I have seen glimpses of the puzzle fit sometimes with random strangers or people that have crossed paths with. Everything is there for a reason we sometimes are caught off gaurd or don't see it all until the end.



Looking forward I still think I have lots of work to do and giving up some of the anxiety about things would help. I feel like if I had more faith and trust then maybe I would be less anxoius. I need to look at life as a journey and not worry about where I should be. My life is my work and I will give until there is nothing left. I struggle with putting others needs before mine or even valuing my life. I'm at the point where I'm like whatever you want but I don't get my answers quickly enough. I value the journey called life and need more faith.

I'm going to leave you with a few songs that have changed my life. Maybe next year I'll do a song posting. Here's to better days in 2011. This video is from a cancer family that did an video instead of Christmas card. Maybe next year I can do that. Hope your 2011 is bright and wonderful. Love to all! Sarah
PS If you are a regular blog reader you probably have seen the songs before!!!