Saturday, November 6, 2010

November 6: Not Quite There Yet...


Heaveno!

(To be fair, I think this is a long deep one, so make sure you have a minute! :P)

Well, to begin, we are still EXACTLY where we were last night when I last wrote you! I can't remember if it started last night, but definitely this morning... Bob and Lynne just started asking us if we wanted to stay an extra day with them. Since we had nowhere to be by a certain time, coupled with being on the go for two weeks straight, and a decent dose of straight up procrastination... we decided to stay with them an extra day... just because we could! Ever been somewhere on vacation and just wish you could stay one more day? Then, imagine your host asked you to so you didn't have to... it was great!


Ali and I never left the house or back yard today! Lynne and Angelique went and got mani-pedis, Bob and Lynne took Jack and Ben to Jack's flag football game early this morning, and Ali and I... did nothing.


"I did nothing, and it was everything I hoped it would be." - Peter, from Office Space

Hey, it was an easy call to make given what I wrote about last night. To be granted a stay of execution from that last spell on I-10 and the infamous return home... we took it with gratitude! After sleeping in, we had breakfast, then headed out to the pool and played in the pool and beside the pool all morning. We then just lounged around, napped, and I caught up a little on work for this next week. (That is a whole separate entry) We then made salmon burgers on the grill, and ate outside on the patio and enjoyed good wine, good food, and great company for one more night.


Bob and Lynne are more than just friends of ours, we're all practically family. We have intervened in each other's lives at some major, major crossroads, and our relationship has been a major factor in the health and growth of each other's family. Both families have come through for the other in some really tough times, and our bond is unbreakable. I love them like they were family. So to get one more day around them with their adorable kids in their beautiful home, it was incredibly healing and comforting.



Tomorrow, however, is it. We've put it off as long as we could. Monday is our 7th Anniversary, and there is much to be done to plan the CA memorial, and I have more opportunities thrown at me in one week than I've had in several YEARS for work. It is as if the Universe and God have been waiting for my return so they could drop everything I could ask for in my lap... all at once. It's going to be an amazingly inspiring week, and I'm not going to tell you why until the end of each day (I don't want to jinx it!).

One thing I can say is that I am very confronted by opportunity and success. I am also confronted by earning money. I own my own company, so I am used to going out there to work for myself to some degree, but folks, I want to make and raise millions of dollars for research by providing inspiration to others. This is no small task, and I have some old fashioned hang ups about money that really stop me from unleashing my full potential. Anyone else screwed up at all about money?

There were some great comments last night and I want to address some things that were brought up that I thought were just great. First off, anyone who apologized last night for their comments, there was no need to, but thank you for doing so nonetheless. Your comments came from an authentic and love-filled place, and that context rang loud and clear.

Okay, one person asked me, "How is your faith so strong? How do you still believe "God is Good?" I salute the courage and vulnerability it took to write this, because I know the author, and the question is not a challenge, it is from a place of genuine wonder. I would love to share a little more about my concept of faith so that it further clarifies how I can walk through this journey the way I do. I have heard many compliments over our strength and our faith, and to all we say thank you for them, it is much appreciated, and it validates our take on faith.

My faith is so strong because it is my faith. I created it that way! It is no one else's. I did not even inherit it. What I mean by all that is that I grew up Catholic and went to church and believed in God, but from the beginning, much of it was taught to me and told to me... the way "it" is... the rules for getting into heaven and avoiding hell. I accepted it as my own growing up and had what I thought was a good relationship with God and my church community.

However, there was an undertow of fear that I grew to resent the more I studied the history of my religion. I used to go to bed crying because I would fall asleep without completing my prayers, and for some reason, I thought this was going to land me in hell. When the CCD teachers taught of sin, and mortal sin, I was scared out of my mind! The thought of everlasting pain and torture in hell was some pretty intense leverage to keep me following the rules.

As I began to study philosophy, theology, critical thinking, and religious history in high school and college (Jesuit high school), I began to question whose faith I was believing in. Was it mine? or was it given to me, and if so, what were the motives? Were the motives to provide me a way to live a good life and get to heaven, or was hell the ultimate leverage tool for behavior modification? I was taught by my jesuit teachers to question things and wrestle with "truth" in an effort to find what rings true inside of me. This is one of the greatest gifts I have ever been given.

The conclusion I came to for me (as opposed to "the truth") was that while the concept of religion as being a way to practice daily living in order to be in communion with the Divine seemed noble, it had devolved into a behavior modification tool - the ultimate tool - that man had misused in the name of God for thousands of years to his own end. What better threat than burning in hell for eternity if you didn't follow the rules? I resented fear-based teaching, and still do. Now, I cannot make the above statement without fully acknowledging that there are hundreds of churches, temples, mosques, etc. that practice religion in a spirit of love and not fear, and as such cause people to become the best versions of themselves they can be, thereby enriching the world we ALL live in.

However, fresh out of learning about the inquisition, the crusades, the genocide of indigenous tribes who would not accept Jesus Christ, the legal hunting of American Indians, the germ warfare waged on the trail of tears, I was horrified what man did in the name of God (Remember, manifest destiny was the God-given right to go west and lay waste to any and all in our way). So, we've been a little misguided in our way along the way, and I wanted no part of any of this, so I turned away from organized religion and the thoughts and writings of anyone. I lived my life based on my own ego and id, and indulged in the glory of the self. I made myself god of my world, and looked down from my perch on everyone around me, judging, condemning, criticizing, assessing. Religion was for the weak, and as such, man had been tricked into doing wicked things by wicked men. Keep it, it's yours, I thought.

Then, on April 18th, 1995, the night before the Oklahoma City bombing, my five best friends were murdered in my little town of 7,000 in Redding, CT. They were murdered by the landlord of three of them over an escalating tenant-landlord dispute that began with a single bounced rent check. What a waste of human life. (The landlord was tried, found guilty, and eventually hung himself in jail). The story was awful in so many gruesome ways I won't get into, but going to 5 funerals in 4 days really threw me back into the middle of God, religion, and faith.

I won't get too much further into this as I have written this story out in its full detail in a memoir that is yet unpublished, but will be soon, so let's just say that whether or not I walked away, I was thrown right back in and now needed to make some hard and fast decisions about what I believed in.

2 years later, my dad died of cancer at home. Prior to that, he had a heart attack and in the emergency room, he was given an experimental drug to save him. He was awake throughout his heart attack, and they administered the drug, told us it would take 10 minutes to either work or not, then left us alone. We just sat there with the curtain pulled around us in our little bay. At this point, I had to swallow hard and pick an outcome that wouldn't leave me crushed.

After a minute of reflection, I said, "Well dad, the way I see it, it's a win win situation. In 10 minutes, you'll either be hanging out here with me, or hanging out with your sister and parents in heaven. If that's the case, I know I'll see you in what will amount to be a blink of the eye either way." He replied, "I think so too."

And we sat in peaceful silence, having hung our collective hat on a possibility that gave us both hope, both peace, regardless of whether it was the truth or not. How could we know?

Here's my point about faith: WE MAKE IT ALL UP. Faith is a construction. There is no one faith "out there." There is only whatever faith I create "in here." When someone says, "I believe ________," and you can tell they do, do you have the right to say they are right or wrong in their faith, if that is what they believe? How do you know what is right or wrong to believe? I have reached a point of reluctant humility where I accept that I do not have the ability to declare anything further about what is "out there" then what feels right for me, inspires me, and pulls me to be the best version of myself I can be. Mind you, it doesn't push me, it calls to me.

I can't make you believe anything unless you first find it true for you; I can't force faith into you, and I can't take it away from you. It really is yours, and it really is mine.

So, since I believe that ultimately I make up my own faith, I have chosen the following faith:

I believe that there is an ultimate expression of being in the universe, and I call it God.

I believe that I am a tiny sliver (like an electron) of this whole being.

I believe that every thing in this physical universe is an expression or manifestation of God.

I believe that there are levels of understanding to this construct that I do not have access to while in this physical body.

I believe that I am never separate from God, therefore, there is no beginning or end to me. I cannot cease to exist. I merely change form. When my house (physical body) "dies," I will leave it and continue to be, and will be invisible to the primary human senses of those still living.

I believe there is no such thing as linear time, it also is a construct to organize behavior. Its existence as we relate to it is based upon our experience. In other words, time 'moves' at a rate congruent with our experience. When we are happy, time flies, when we are sad or bored, time crawls. People talk about 'trauma time' where things slow down into slow motion. I think that our concept of hell is equivalent to being frozen in time, and that our concept of heaven is equivalent to having access to eternity in an instant. If time moves based on our bliss, and heaven is the ultimate and total bliss, time would cease to exist in that experience because eternity would exist all in one instant moment. (This is where my concept of reincarnation comes in. If you follow this reasoning, all there is is this present moment. We move from present moment to present moment, and if we are unhappy with who we are being in THIS present moment, we can reinvent or 'reincarnate' ourselves in the next present moment. I first heard this concept of reincarnation from a Rinpoche (that's a 'high-up-there-in-the-ranks' monk) in the Buddhist tradition, and it completely revolutionized the concept for me.)

Inside of this construct, there is no death.

Inside this construct, the more joy I chose to experience, the faster I will reunite with those who have left physical form.

So, when someone "dies" in my construct of faith, it is like they have moved away for a while. I'll be able to reconnect with them when I leave this form. In fact, through intuition (sixth sense) and dreams (the continuing experience of my essence while my body sleeps) I believe that I can still connect with others, regardless of whether they are in physical form or not.

That's why there are no "goodbyes" in my world, only "see you laters."

Wow, I really just went off there, didn't I? Anyhow, I fully acknowledge that I profess that none of it is "the truth," but it sure creates a world in which I can stare life and death in the face with grace, humility, and enough personal power to withstand whatever wind blows my way. If I am making it up, why wouldn't I make up a faith that allows me to be happy in the face of whatever I face, and is impervious to any event?

Ultimately, I plan to write a book just on this one topic. I hope that my ideas about the concept of faith can empower people to find what works for them. As I stated above, I believe that we are all one, and as such, if we are freed up to truly create our own faith, we'll all end up with one faith, because that which we do to another, we do to ourselves, and that which we do to ourselves, we do to all others. What we'll end up with is nothing new, it is simply "The Golden Rule" recreated in a new way.

The second topic I want to address is the concept that if we choose our experience, can we choose peace and healing instead of pain?

What an awesome question!

Here's my take on it.

First, we have to distinguish that there is a difference between pain and suffering. I think pain is a very pragmatic and useful signal that our body communicates with when something is out of order. Suffering, on the other hand, is the story WE MAKE UP about the pain we are experiencing. I also think that pain is one half of the coin in physical experience to give relativity to the concept of pleasure. This physical universe we find ourselves in is based on relativity, so to eliminate the pain signal, would also eliminate the pleasure signal. They are two sides of the same coin to me. If you can't know pain, you can't know pleasure, because it would cease to be distinct from anything else, and as such would be rendered normal.

So, I think in the grief process we can have peace and healing without suffering, but not without pain. I think that pain is an integral part of the process, and as such, should not be avoided or even demonized. What is out of order that would cause the pain signal? Well, I can say from experience that what I grieve isn't the absence of the body of the person. It is the perceived end of my ability to express freely my love for them in a way that "feels," i.e. is tangible. I remember a girlfriend dumping me in high school, and I remember feeling this huge pain in my chest. It was the pain of grief; the grief of no longer getting to freely pour out my love on this girl. She didn't die, but my ability to express my love to her was removed, and for that I grieved, for I enjoyed deeply loving her in a tangible (seeing, hearing, touching, smelling) way.

The suffering aspect comes from our bizarre relationship with permanence. Permanence is this weird myth that permeates our western society in such a way that is very debilitating and causes much of the suffering we experience. As has been said by many, the only thing constant is change. That's it. Everything else is impermanent - temporary. Yet, when we get attached to the 'status quo,' the myth of permanence slowly creeps into play and we relate to things like they will always be, ESPECIALLY when things are going the way we like them to. You know the phrase "This too shall pass?" Well, that phrase is usually offered during tough times. The wiser person remembers it in good times as well. I think suffering occurs when people relate to a moment as "well THIS shouldn't be!"

I tell you this.

Whether or not a moment should or shouldn't be is completely irrelevant. All that is relevant is THAT IT IS. As Bella's heart monitor flashed ZERO, and her birth song came on, regardless of whether I thought "this shouldn't be", it was. So, in that moment, I could resist the moment and attempt to impose my will on the moment, but how would that go? Lord knows I moved every rock on earth to save my daughter, and in the end, it wasn't enough. In that moment, (just like in every moment) I had the opportunity to make a choice. The choice I made was to sing to my daughter as we unhooked her from her life support, and embrace her body in its final moments of animation.

Was I in pain? Yes.

Did I suffer? No.

Lastly, I think that pain is not mutually exclusive of peace and healing. My pain comes and goes, as does my peace and healing. They all coexist inside of me, it's just that they take turns moving to the forefront of my experience.

I hope that these essays don't put you off. They are just the lenses through which I look at the world, and they seem to work for me in the face of death. I choose to share them with no other motivation than one shares a workout routine or a good recipe. They bring me results and joy, so I am happy to share them. Take what you like from them and leave what you don't. The beauty of our world is that we can hold differing beliefs in harmony, not dissonance, if we choose to.

Now, if I could just find some better lenses with regard to creating income! That is one of my commitments over the next week. Income and money have been areas of life that have not worked for me as well as I'd like them to, and I am out to transform my relationship to them so that I can have a breakthrough in creating massive amounts of money to find a cure for EB and care for my family.

I tell you I am so honored that you continue to read about our journey, and I really appreciate that you are still here. I also really enjoy when you ask the tough, deep, philosophical questions that many of us toil with privately, but are afraid to discourse about publicly. Thank you for your courage to voice your most vulnerable thoughts and feelings here! I want this blog to be a "SAFE ZONE" for people so that you feel welcome to ask the deep questions, and respond in kind. From your amazingly generous and eloquent comments, there are a lot of you out there that are deep thinkers like me, and I appreciate your presence in my life through this blog!

Many blessings to all of you on this beautiful Sunday. The Sunday my family ALL return home.

God night.





29 comments:

  1. your journey is a beautiful one. thanks for sharing.

    missing bella...and now baby elle, too

    love and hugs

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  2. Thank you Tim for sharing your "recipe". I have to say that I will have to read the post again a few times because I don't get all the concepts and I do want to understand. I feel I want to be prepare with your example to face any pain or suffering in life.
    It's nice that you are going home even if it's not going to be the same home now, without Bella; but you will have your three Fs with you.
    Praying for a safe journey home ,healing and love.
    Mariana,Uk
    Loved all the pictures and I'm jealous of the sun and warm weather!!

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  3. heaveno!
    it is with grace not fear that i believe! god is indeed good!
    lifting y'all up in prayer as you make the difficult trip home today!

    god bless y'all
    susan
    w-s, nc

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  4. Good morning, sweet friends...

    The frost is indeed on the pumpkins this morning here in NC, but I'm warm as I sit with my coffee in front of my heater and its delicious warmth. I'm so glad you all could enjoy your own special warmth in the company of good friends as you had some much needed R&R.

    One of my favorite verses is 2 Timothy 1:7 - "For God has not given us a spirit of fear, but of power and of love and of a sound mind." God has given believers all the spiritual resources we need for every trial and threat. When we focus on God's sovereign nature and His perfect purposes, then we are able to live with godly wisdom and confidence.

    Praying for you all as you go home today and for what lies ahead in the coming week.

    Take care and be safe.

    Susan
    A friend in NC

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  5. Wow Tim,
    It is not often that:
    a. My path crosses with someone that thinks as deeply as I do.
    b. Someone that shares my views on life, coping and spirituality.
    I would love to hear your opinion on this, do you think that one needs to endure a great deal of suffering to the point of being close to unbearable in order to realize the suffering is a mind creation?

    Aside from that, I wish you a safe trip home. I know the pain will be present, I can feel it as I feel very connected to you. I will be holding you all very closely in my thoughts and prayers.

    Good luck on the money front!!!!
    Lots of love,
    Angela o

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  6. What are your old fashioned hang ups about money?

    Some of the uber wealthy give money away. (and not so wealthy, but I'm going wealthy here) Not a bad idea to donate, but I hope it's not done out of guilt for earning it and being "rich".

    Money is used to trade for goods.

    I consider it kind of like a tool.

    I don't have any, so I don't understand hang ups.

    You have a great perspective that gets you through all the peaks and valleys of life. Thanks for sharing.

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  7. Hi, Tim,

    As you may be know, I live in an Eastern-European country and the official phylosophy in my teen years was atheism. Even though they stated that "the religion is a way to oppress and manipulate the people", I often felt the need to have a connection with someone bigger than me. Not to receive something from him/her, but to be able to just reveal my soul to him/her.

    When my baby-boy was born with EB I passed a lot of time thinking and choosing. My opinion was just like yours - that we choose our own faith and behaviour as a way to help us in difficult times and to help us be the best we can. If I can live thinking that they are there and waiting, and the time is just a fiction, there is no more pain in the soul (or much less).
    Faith is for the hard times.

    It's new for me, that the happiness makes the time go more quickly and is the best thing to do, when you are bereaved. So - thanks for this insight!

    I am very glad the the road ahead of you is revealing bit by bit, so you don't have to struggle to find it.

    I am still in a position, where I don't know which way to take and I am doing beautiful things as a way to pass time, until get an opportunity or revelation what to do next.

    So I wish you much luck with all your projects! Everything will be just fine, because you won't judge it.

    Best wishes to Ang and Ali,

    Elena

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  8. Good morning!

    So glad you were able to take another day to relax and rest with friends- and what a beautiful place to do it! (Would Bob and Lynne consider turning their home into a bed and breakfast - LOL!)

    Anyway, thank you for sharing such DEEEP thoughts with us! I will respectfully say that I don't agree with all of them, but am glad that you have a place where we can share our thoughts, and that our love for each other doesn't change even though we don't see eyeball to eyeball on things.

    Anyway, I'm praying for the last leg of the journey to be peaceful and that your week goes well. Am excited to hear about the wonderful opportunities you have in front of you! Please tell Ang and sweet Ali hello from all of us!

    Love from TX,
    Laura (and the Team)

    PS - I get the money hangup. Nowhere NEAR the scale you're talking about, but when we have a fundraiser at our school, I cringe! And this is a place that I believe in and have no problem giving my own money to, but asking other people? Yikes!! Anyway, that may not be the same hangup you have but I definitely have them too! :)

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  9. Hi Tim, Ang and Ali...

    I am sorry to hear about Ella's passing. I had the pleasure of meeting Tim first at parents lunch out in June. We are the Osteopetrosis family from Rochester NY. My son Joseph was back in Minneapolis from complications from his BMT. I just want to say again how sorry I am. I think what you are doing to get the word out about EB is fantastic. Please feel free to visit Joseph's site. www.caringbridge.org/josephparthenais

    ALL OUR LOVE

    Kim and Joseph Parthenais

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  10. Somehow the "B" in Bella didn't print....SORRY!

    ALL OUR LOVE

    Kim and Joseph

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  11. I loved your post. As a little girl, then a teenager, I attended church regularly. Every Sunday, Sunday night, and Wed night, all the kids sat in the front 2 rows. Every night, towards the end of the service, I can remember the Preacher/Minister telling all of us to come to the alter and be saved or burn forever in Hell. Talk about scaring a kid! As I got older, I decided that I didn't care for that kind of church, and left both God and church for many years. Later, I realized that my religion was just that, mine. I didn't like someone telling me I had to believe this way or that way. Religion is a very personal thing for me and my family. It is what you make it. Everyone interprets the Bible different and that's ok. I have always believed a lot of how you do, and you have opened some new avenues for me. Thank you, and thank Bella. Without her, I would never have met you, even it it is in the cyber world.
    As for the income, have you thought about doing the jelly bracelets. Maybe purple, for Bella. A friend was trying to raise money for her son's cochlear implants and used them. She found a company that agreed to donate and the proceeds went to help her son. Maybe even one with Bella's name. I would buy one. My friend raised $10,000 in just a few months. Imagine what you could do in a year. It's just a thought.
    Be safe in your travels home.
    Thoughts, love, and prayers to your family,
    Carla Spradlin, Portsmouth, Ohio

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  12. Maybe a bracelet with a butterfly on it. Again, just a thought.
    Carla Spradlin

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  13. Carla,

    Think of the number of people on this blog alone.

    Cute ideas.

    A fellow Ohioan

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  14. This is something that I will read over and over again. Right now I am struggling with myself, my emotional and physical well-being, and at the same time trying to reconcile with God, the God that I told to f*uck off seven years ago, because I could not stand the pain and the suffering and hated Him for not doing anything about it.
    But when I read your thoughts about pain and suffering, I come to almost the same conclusion that you came to when Bella passed; Am I in pain? Yes, Am I suffering? Not as much any more.
    Not only do you share you life with me/us, you are also helping people heal, helping people move forward (at least me).
    Thank you Tim. (And when your memoir comes out, I don't care if the cost of shipping is more is greater then the cost of the book itself, I will buy it!)
    Again, thank you.

    Jennifer,
    Sweden

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  15. I am so inspired by your explanation of the difference between pain and suffering. It is nothing something I have ever thought about but it is so pertinent, relevant, and true! I so appreciate you sharing yourself in this way. What an incredible thing, to read a virtual stranger's blog every day and to learn so much about myself as well as you and your family in the process.

    I can understand why staying another day with Lynne was so appealing. :) When I met her on Friday she seemed so genuine and kind. Friends like that are true treasures.

    I hope you have a safe drive home and I'm looking forward to all of the mysterious updates this coming week. ;)

    Best,
    Cara in Tucson

    P.S. Office Space is one of the best movies ever!!

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  16. Praying for you today. A momma in TX

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  17. Pain. Suffering. Going into my control journal.

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  18. Tim - Thank You for sharing from your heart and the core of what you beleive and how you live day to day. Totally insightful!

    I have been meaning to ask about that Landmark Seminar you mentioned a while back. I'd love to hear more about it.

    Peace and love to you and Angelique on your 7th anniversary. Sending prayers of comfort for this week and the weeks to come.
    Tina in NJ

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  19. Just wanted you to know that our hearts are with you as you make your way home. There are no words to express how much we treasure you guys, and your courage, your love and your stand for us.

    We asked Ben if he liked having Ali visit. Answer? "Yes, but now I miss her!" Perfect summary of your "two sides of the coin" take on love and pain!

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  20. No picture of Bella tonight???

    Thank you for being so honest with us today. It meant a lot that you were willing to put yourself out there and express yourself so candidly the way you did. I like the way you think Tim! I agree with you on a lot of things and I too believe that you will one day walk hand in hand with your little girl Bella, free from pain, and you'll be able to raise her as you and Angelique so desperately tried to do here on Earth.

    I want to share something with you...when I was 17 years old and a senior in high school I became pregnant with a precious little boy. I was scared and confused and although I knew I would never have an abortion, I didn't know what to do. I turned to God, and thru Him I found my answer. I was inspired thru prayer that I was to place my son for adoption. I didn't come to this conclusion until I was about 7 months along and even then, I changed my mind back and forth thru the end. The birth father had become very abusive and I knew that although I could give him all the love I had, he would be much happier with a mom and dad who loved eachother and could love him as well. I found this wonderful couple who had been trying to have a child for 10 years with no success. I met with them a few times before my son was born and I KNEW they were HIS FAMILY!! He was born with complications and both of us were in the hospital for 7 days. Those 7 days were a blessing from God. That time allowed me to get to know him and come to peace with my decision to place him for adoption. When I went home without him I felt this VOID, this emptiness. Although I was happy that he was with his family, I was suffering because for 9 months he was growing inside of me and we loved eachother and I would die for this child, and now, I had nothing. All I had was a c-section scar that constantly reminded me of him. I cried for months and although I missed him terribly, I never regretted my decision. To this day I still recieve pictures and letters and although that was the hardest decision I have ever made in my life, it's one that I will never regret. I'm telling you this story because you have been so candid and open with us about your feelings and I know that from experience, being able to talk about it and share the pain, helps to ease that pain. Thank you for allowing me to feel like I could share that with you.

    Happy Anniversary to a wonderful couple!! I hope this week goes well for you. Lots of prayers are being said for you that all 3 of you will be able to get thru this week and the weeks hereafter. Stay Strong!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(10 mos.)
    The McLaughlin Family
    Moreno Valley, CA

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  21. Thank you for creating a safe space for people to explore grief, death, dying, loss, pain, suffering and spirituality. Wow, that's a lot! But it's true. I, like many of your readers, follow other blogs of parents who've lost children, and so many times I find myself literally unable to comment out of fear of saying the wrong thing. I don't ever, for one second, want to add to their pain or grief, I only wish to ease it (although I realize, a stranger over the internet can't really ease much anything). But with you, you are completely different. I feel like I know you, although I don't. I feel like I've been a part of your journey because you've asked questions and gotten me to open up and at times, this has felt more like a dialogue than a blog. And I've never, for one second, questioned if something that I'm saying is OK or not.. I have always known that by commenting, I'm letting you know that you are connected to a huge community, that you are spreading Bella's message and therefore, it's ALL good. That my friend has been a wonderful, wonderful gift these past few months. Thank you.
    Emily
    Ft. Lauderdale, FL

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  22. Wow! That isnt what I expected in a response...it was so much more than I could have imagined as an answer. Thank you for taking the time to answer it so deeply and so truthfully. I am glad you took my question for what it was intended as it never was to challenge. Your response got the old wheels turning and as I was sitting waiting for Derek and Noah...I was gazing at Clara. I realized that I have never gotten mad at God for the situation that she is in even though there are reasons we could be mad ...we end up being thankful. We actually are thankful for what she has. I wouldnt be here right now typing this because you, Ang, Ali and Bella would not have entered my life. I am so very thankful that you have. If Clara would have been born healthy I wouldnt want to help change the world...to raise awareness for rare childhood diseases. I cant be mad at a God that is changing me.

    Thanks again Tim for hitting on this topic...it means more to me than you may know. Tonight you are leaving me so very inspired. Inspired to continue on my own journey of faith. Thank you.

    Thinking of you all as you finally get home. Sending sweet kisses for Ali.

    Denise WI

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  23. Emily's comment...wow! She really sums it up.

    Denise WI

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  24. So beautiful, Tim. So much to think about. So much to learn. Here I am a senior citizen and so lucky to have you come into my life with wisdom I have not yet obtained. So much to think about.

    I remember the providence that been coming into your life all along and I feel it is still guiding you. As my friend in Texas, who has suffered(?) so much always says "Things do have a way of working out".I hope getting home will be easier than you have been imaging. Onward and upward and cleave to the line is something I try to live by and I know you guys will do that. What a journey you have been on and so much inspiration you have given to so many. I hope to meet the Mclaughlins next Sunday. They have been such loyal friends on this journey. See you then, Love, Greenie

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  25. w o w...took me 3x to read the above entry, but I am so there! I always find myself saying, "wow, I have never thought to think that, but now that Tim has layed it out so clearly, yea...I have thought that, but couldn't collect it so eloquently!' Every morning, I find myself calling my mom and saying, "ok...now did you read THAT entry? wow and whoa!" and it never fails, my mom says: "yes, you can see God in and thru Tim...it is amazing."
    I work for a Home Health & Rehab company...would be honored to help you make connections with your company in this industry.
    Thought of you, Ang & Ali...A LOT today...texted Sara several times!
    praying & thinking about you,
    nicole & family

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  26. Dear Tim,

    Thank you for sharing, in such a truthful way, your believes. I have similar ones, but over the last years I have numbed them... Life has been good to me (us), so God is a secondary character... so I thought.

    After Matilde's birth and her poor prognosis, I needed to make choices. Was my faith truthful or not? If not, how could I ask God to heal her?? So, I choose to have a truthful faith and choose to have God constantly present in my life and heart.

    Bella's journey and your teachings allowed me to consolidate my believes. And most important made me realize that when something "bad" happens it makes us better persons. We just need to choose to accept life as IT IS.

    And God is always good! All the time!

    Blessings,
    Carla, from Portugal

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  27. What an awesome post Tim! Thank you for all your words.... I really enjoy reading them. And though you are struggling with being home, know that we are so happy to be able to see you and physically hug you all soon. I can't begin to imagine what it feels like to walk thru your front door and see the items like the high chair and the crib... it makes my heart feel heavy for you. But I know that being the person you are, you will somehow turn it into something positive. You can look at it as though she beat you home and was there waiting for you...greeting you as you all walk through the door! I know it may sound silly, but when we finally get to come and say hi...it will feel strange to us being there without Bella. But we still have all the wonderful memories! And lots of new ones to make!
    We love you dearly and must see you soon!
    Bunches o Love,
    The Vanderbooms

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