Friday, January 27, 2012

Theirs is the Kingdom of God....

A friend posted this on facebook this morning and I had to share. For those that don't know, I work with children with special needs every day and know that I have witnessed the simplest form of faith in the eyes of those I serve. Children really do have a better grasp of God then we give them credit for...and moreover, they have a better grasp then we do because they don't question but also, I believe, because they are able to remember the arms of God around them while they rested in our wombs.
I envy my brother Kevin. He thinks God lives under his bed. At least that's what I heard him say one night. He was praying out loud in his bedroom, and I stopped to hear him say, “Are you there, God? Where are you? Oh, I see. Under the bed.”

I giggled at him and went off to my own room. Kevin's unique perspectives are often a source of amusement to me. But that night I realized something else and thought about it long after I finished laughing. I realized for the first time what a very different world Kevin lives in. He was born 30 years ago, mentally disabled because of complications during his birth. Apart from his size (he's 6’2” and built like a linebacker), he’s really not an adult.

He reasons and communicates with the capabilities of a 6-year-old, and always will. He’ll probably always believe that God lives under his bed, that Santa Claus is watching and that airplanes stay up in the sky because angels carry them.

I remember wondering if Kevin ever realizes he’s different. Is he ever dissatisfied with his monotonous life? He’s up before dawn each day to work at a workshop for the disabled, comes home to walk our cocker spaniel, returns to eat his favorite macaroni-and-cheese dinner at least 5 nights a week, and later goes to bed. The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child. He never seems dissatisfied with his life and is happy every day. He trots out to the bus every morning at 7:05, always happily looking forward to his day of simple work.

He wrings his hands excitedly while the water boils on the stove before dinner, even though it’s the same thing almost every night, and he stays up late twice a week to gather our dirty laundry for his next day's laundry chores.

And Saturdays - oh, the bliss of Saturdays! That's the day my Dad takes Kevin to the airport to have a soda, watch the planes land, and wonder loudly on the destination of each passenger inside. Kevin shouts as he claps his hands and wonders about the destination of the passengers on each flight. His anticipation for that simple trip is so great he can hardly sleep on Friday nights. And he goes through his world of the same daily rituals and the same weekend trip, every day, every week.

Kevin doesn't, and probably never will, know what it means to be discontent. His life is simple and he takes delight in it. He’s the most content person I know. Kevin will never know the complications of wealth or power. He doesn’t care what brand of clothes he wears, as long as he has some green shirts (green’s his favorite color), or what kind of food he eats. His simple needs have always been met, and he never worries that he doesn’t have “more.”

He’s diligent. Kevin is never so happy as when he’s working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it. He never gives up on a job when he starts, and gives it his all until it’s finished. But when he’s done, he knows how to relax. He’s not obsessed with other people’s work, with what they’re doing or not doing, but just pays attention to his own. His heart really is pure.

He still believes everyone tells the truth, that promises must be kept, and when you are wrong, you apologize. Free from pride and unconcerned with appearances, Kevin isn’t afraid to cry when he is hurt, angry, or sorry. He is always transparent, always sincere. What you see really is what you get with him. And he REALLY trusts God.

When he comes to Christ, he comes as a child. Kevin seems to know God - to really be friends with Him in a way that an “educated” person never will be. To Kevin, God feels like his closest companion.

In my own moments of doubt and frustrations with my Christianity, I envy the security Kevin has in his simple faith. It is then that I am most willing to admit that he must have some divine knowledge that rises far above mine. It’s then I realize that maybe Kevin isn’t the one with the handicap; I am. My obligations, my fear, my pride, my circumstances, my desire for more, more, more - they all become disabilities because I can’t seem to trust them to God's care the way Kevin can.

I wonder if Kevin just easily comprehends things I can never learn. I wonder if, when it comes to God, Kevin has wisdom I will never gain. After all, he’s spent his whole life in that kind of simple innocence, praying after dark every night and soaking up the goodness and love of God.

One day, when all the mysteries of heaven are opened, and all of us see how close God really was to our hearts, we'll realize that God really hears us and always heard the simple prayers of a boy who always believed that God lived under his bed. Everyone will be surprised. Except for one person, that is. Kevin won't be surprised at all, and he’ll wonder why we would be because, to him, God was always right there whenever he wanted or needed Him, right under his bed.

Matthew 19:14 But Jesus said, "Let the children come to me. Don't stop them! For the Kingdom of Heaven belongs to those who are like these children."

Such a wonderful message.

Wednesday, January 18, 2012

Spiritual Gifts

This was the topic of Pastor Jeff’s sermon a few weeks ago and then again in the devotion book Geoff and I do a few days ago. It’s gotten me to thinking and then digging even further into it with a very lengthy ‘debate’ (that is a polite word for some words being exchanged online by people on opposite ends of the spectrum, some that weren’t very ‘politically appropriate’) about issues around what to do when you find out your babies have TTTS. And since it was a lengthy debate you get a lengthy novel post by yours truly LOL!
Pastor Jeff got me to thinking about my gifts when he said something along the lines of ‘God wants us to be a purpose driven people. He wants us to do good works and he gives us the tools so we can do this’.
Ephesians 2:10 (NIV)
10 For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.

He encouraged us to think about what our spiritual gifts are and ask ourselves if we are using them to the best of our ability and for the right reasons.
Hmmmmm spiritual gifts….I really have no idea what this means in the eyes of a church or religion. Wikipedia defines it as this…
In Christianity, spiritual gifts (or charismata) are endowments given by the Holy Spirit. These are the supernatural graces which individual Christians need to fulfill the mission of the church.

There are lists of various types of gifts and after reading them all, I think this is the one that most applies to me, to what I believe is my gift and how I use it…but I’ll get to that in a bit.

16. Mercy: "The special ability that God gives to certain members of the Body of Christ to feel genuine empathy and compassion for individuals (both Christian and non-Christian) who suffer from distressing physical, mental, or emotional problems, and to translate that compassion into cheerfully done deeds which reflect Christ’s love and alleviate the suffering."
This gift is a practical gift. Those with this gift find themselves visiting and assisting those in need, and often feel the pain of the person they are helping within themself. People with this gift find it extremely difficult not to help those who seem less fortunate than themself.

I am not really sure if this is what spiritual gifts really means or just what some religions tell us that this is what is meant… but then again I am not sure if Jesus really cares what the classification of the gif t is but rather if we are using them or not.
Until I did this research I believed spiritual gifts to be talents you have, skills you have that you can use to better the world. (Back to Ephesians 2:10 again…different version this time….
Ephesians 2:10 (NLT)
10 For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.

And I had come to believe that this bettering is to hopefully be a form of evangelism…for if you are using your gifts and praising God through your gifts then others should see this in you…and from there, they will hopefully see how our amazing Lord is working in you. This belief was highly supported by what Pastor Jeff spoke about that Sunday…that by using your gifts, by being the masterpiece that God created you to be, you will be doing the good works He intended for you. And by doing these good works you will be showing others the strength of your Christian character….maybe even making them wonder what the secret to our happiness and contentedness in life is and wanting some of that for themselves.
Before I did this research I believed my gifts to be my writing and my ability to use words to express compassion, empathy, understanding, kindness and to use my gift of expression to give hope, to show that peace and hope can come after loss. I have said this before and I will use it as a mantra for my life I think…. ‘God gave me Cole and Cameron for a great and wonderful purpose. TTTS took one of them, made me fear for and protect (forever) the other and changed me forever. I believe that I was given TTTTS and this journey I am on because I am meant to impact others’ lives with my ability to express myself about how this journey has affected me. I am very certain that one purpose for me on this journey is to help others, to support them, to lend an ear and a shoulder to cry on and be there for them when they need an understanding friend. I do that through words which I seem to have a talent for putting together well…maybe not always orally but through written word. I have been told since the day I began blogging about our journey…back about 3 years and 9 days ago that I have a gift, a talent for writing. And so I believe I need to use that talent.
And I still believe this is my gift from God, a spiritual gift of sorts. But obviously the true gift is the gift of mercy….the basis for my desire to help others through their TTTS journey, their baby loss journey, their loss of any loved one journey, their journeys through struggles, crisis and burdens … all of this ties in to the gift that God has given me to feel genuine empathy and compassion for individuals who are suffering.
Now to why this gift has become a focus of conversation for me lately….
About 2 weeks ago a mom of TTTS survivors was giving support and advice to a mom who had just been diagnosed and told her to stay away from reading the ‘bad’ stories and the ‘bad’ outcomes and the hairs on my neck stood up. I got defensive and rightfully so. I didn’t present it maybe in the best way and that ended up getting others of single survivors and double losses involved as well. The big focus of my message that I posted over and over again was this…. When a parent of mono-di twins is diagnosed with TTTS…heck when the parent of any fetus is diagnosed with a serious condition , I believe it is their job to be their child’s/children’s best advocate and in order to do this they need to be educated in all aspects of what is affecting their child. I also know, first hand, that not being informed about all the scenarios of the disorder leads to an even more intense devastation when things don’t turn out the way you expected….when they aren’t just the outcome of the ‘good’ stories. We were not prepared to lose Cole. We were told of the percentages but we were given very good odds for double survival at admittance. Things progressed but this was explained to us by another doctor (Dr. Ryan and his fellow) and even then, there was still much optimism. We learned, then, about things like velamentous insertion (the cord being inserted into muscle, in our case 11cm, away from the edge of the placenta) and placental share but I didn’t look those things up, I didn’t know I should. I had no idea how often babes with poor share and poor insertion pass away after surgery. If I had, I would have been prepared. If I’d read about fetal anemia I would have been prepared for Cameron needing his transfusion after Cole passed away, I would have understood how serious it was and would have known that the transfusion was saving his brain and maybe his life…and was not something I would want to say no to…not that I considered it.
And so I spouted off about why I believe new diagnosed families need to read all stories. And of course that got some people worked up. Every one of those who got worked up had double survivors.. which proved a point to me…they don’t even really look at all angles, even after their babies are born.
Basically we, the parents with losses, were told over and over that our stories take away hope…of course it was presented in a much more positive way but that was the bottom line. I disagreed and still do. The fact that I never lost hope, even in my darkest moments, says that my story and meeting me online, is worthwhile and might easily give someone else hope. No wait, it did give someone else hope…and someone who has double survivors I might add! It did not seem to matter what we said, these angel mommy friends and I…and tons of double survivor moms too…some of these moms refused to concede that A)it might be a good idea to be educated in all aspects and outcomes, that B) hope can be found in the story that has your worst case scenario, that C) you might save your babies lives or at least impact their outcome by reading a story of an outcome you hope you never see and that D) they have these opinions about what NOT to read because they have the ‘best’ outcome…that because they have two survivors they are unable to put themselves in the place that contains what ifs, maybe I could or should have and what else could I know about this. And this last one is the one that pisses me off. NOT AT ALL because they have double survivors…I am so past that. No what makes me so angry is that someone who had the ‘best’ outcome thinks they have the right to advice someone not to educate themselves and prepare themselves for what could be their outcome.
In the end these discussions ended up with the founder of the TTTS Foundation ‘reprimanding’ us all for talking about all of this when we should be supporting the mom who originally posted about her babies. Valid point and I feel bad about that. But the fact is this support group presents things in a light that is often very positive and very one sided. They promote therapies like drinking boost and having horizontal bedrest as a way to ‘stop’/treat TTTS . Don’t’ get me wrong, this has worked for some cases…cases that never progressed past stage 1…but still!!!! This group seems heavy into support for those pregnant with 2 living babies and the end result of those double survivor pregnancies. Ok, ok..I am not here to bash anyone and I am. STOP!!!! Anyway…in the end this founder posted a note to us all to think of what we wanted our babies message to be to the world; what did we want their voice to be and were we really singing their song.
And you know what…I am! I am so very proud of the song I sing for my children. I am so very happy that I am able to tell their story with joy and hope and with peace. I am so glad that God has given me the gift of mercy…the ability to reach out with compassion and empathy…even when reliving it might be hard. I am so glad that He has given me the strength to reach out and even more so, the writing talent to be able to put those words down that give that comfort, hope and strength.
The voice I want for my babies, especially my angel, is the voice I sing with each day. It is a voice of empathy, compassion and support. It’s a song of hope and peace after loss. It’s a song of deep and purposeful meaning of a mission I am confident that God and my angel son guide me sing. It is my song and I will continue to sing it, and pray that will help others, until the day that I day.

Monday, January 9, 2012

Happy New Year!

Happy New Year everyone!
I know, I am a bit late. Truth be told, I blogged so much in December that I needed to take a break. And now I have one for today and likely another with days.
Today I want to post, publicly, my goals for 2012…not resolutions because if that was the case, I’m already busted. But instead I have goals that I believe will be achievable but I also know that I will struggle with them at times, I will be tempted to quit and I promise that I will work hard at overcoming the obstacles in my way.
Yesterday in church Pastor Jeff spoke about extreme makeovers and what that can look in your relationship with Christ. I think 2011 was the year for that in so many areas of my life. Most definitely in my faith but also, for those that have seen the pictures, in me, my size, my health and my attitude.
This was me in the fall of 2010

This was me in July...about 30lbs lighter but not really exercising yet.

And me just a month ago or so... 50 lbs lighter!!!

And although 2011 consisted of a pretty extreme makeover, I don’t think that it is over yet.
Ephesians 2:10(NLT)
10 For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago

I don’t believe that we are ever done growing and changing, that God is ever done working on each of his masterpieces. He gives us challenges, brings us new joy, creates a path for us so that we will do the things that he planned for us the day we were born. Earlier this fall I began reading a book called ‘Thin Within’…not sure if I mentioned it or not. It is a grace approach to weight loss and it really has changed many areas of my life. But I’ve slipped there and found myself unfocused, not listening to my body, to my stomach, to my head and to my heart when it came to food. Well maybe I listened to my heart and ate for emotional reasons but I did not listen to it from the aspect of the love God has for me and how much he wants me to be my God given size.
So my goals for 2012….
My first and most important goal is to learn more about the Lord and grow my relationship with Christ. When I look back at all the things that happened in this past year and at where my faith journey has gone I am amazed and yet I am also aware that many things, positive things, did not change. I was surprised by this. I thought I’d changed, grown and that before I thought differently but I realize that I am the same person deep inside , that what I thought about my life and my journey, what I valued and who I was really aren’t the same inside. The difference is, I think, on the outside. I that is what I wish to work on…projecting the love I have for the Lord in all that I do, to improve the way I interact with others, to follow his teachings in all that I do and say. To achieve the first part of this goal, to learn more about God I am planning to read the bible from start to …..well to wherever I get to I guess. I have started and am following ‘My Daily Bread’ s bible in a year guide. So far I have read up to Genesis 23…and am already about 6 chapters behind. Oh well…all in due time.

Ephesians 4:16 (NLT)
16 He makes the whole body fit together perfectly. As each part does its own special work, it helps the other parts grow, so that the whole body is healthy and growing and full of love.

My second goal is centered around my health because I know that I have been given the gift of this life and this healthy body for a reason…I just need to make the body last as long as possible! First and foremost I need to concentrate when I am eating, focus on my food and not get distracted…and therefore eat too much. I need to pay attention to my body and only eat if I am hungry. And above all, I need to remember who gave us the gift of the food we eat and give thanks for it. (A tip from Thin Within… for one meal thank God for each bite you eat as you eat it and really concentrate on how good it tastes…I was amazed how amazing it tasted and how quickly I became full because I took the time to eat and be thankful)
I want to eat healthier (boy have the last few weeks been hard on my weight loss…it’s been a gain). I finally conceded today that I have to enter my current weight into the program I use and stop putting it off until I weigh what I did a month ago or so…that isn’t being honest but moreover it’s not encouraging. I need to see the numbers coming down again on paper or the computer screen, I need my online friends who are part of the program I use ( … I highly recommend this program and especially it’s smartphone app) to be able to encourage me when I do put in the weekly weigh in amounts…which at my current weight and loss rate compared to where I was…well it would have been a month maybe before I’d be seeing ‘Jodie has lost 0.5 lbs since her last weigh in (6 weeks ago LOL).

I need to get vegetables back into my diet more and I need to eat sweets less. I need to add in healthier protein and take out more fat. I also, desperately, need to get back to exercising every day. No I need to get back to doing cardio more often and continue exercising every week day and adding in weekends too. Right now I do 20 min utes of weights each morning 4-5 days a week but never get cardio in except to walk extra steps during my work day. I used to walk almost every day for 30-40 minutes. So my goal… 20 min of cardio 2 evenings and one morning a week and 20+ minutes of weights 4 times a week. My goal for the weekends is to take as many steps as possible (chasing Cameron around the arena does count LOL) and do one 20 minute cardio workout over the course of the weekend.

My last goal for 2012 is to finish my book. It’s coming… I wrote (well took from the start of my blog and rewrote) another big section over the holidays AND I finally got it out to a few friends to have them look it over, give me their opinion on the styles I’ve written it in. I still don’t know what I plan to do with it when it is done. I am thinking my first place I will send it to is the publisher of the book that my boys story is already in…. Forever Linked.

But if anyone has suggestions, knows a publisher, has you friend…etc… you get the drift. I’d love to get some information and start looking at that aspect of it.
So 2012 looks like the beginning of another great leg in my journey of life.