The Five Percent Collective Has Been Born

Happy Monday! Since most of you will read this Monday morning...to those night owls on the West coast...go to bed already! (Listen to me...I should talk)

Well, I shouldn't have made that joke about once, twice, thrice a night. Thursday night, Bella let all Hell break loose and mommy and daddy pretty much didn't sleep a wink. During that night, Bella showed us a new scream that made our blood freeze. It happened on several occasions. She would be lying on the bed, legs and arms out, seemingly relaxed, when suddenly out of nowhere, her eyes would get big and she'd start screaming like someone was setting her feet on fire. It would persist for probably only 5-10 seconds, but it felt like eternity. The scream was louder and more violent than ANYTHING she has said or done to date. Ouch. I called in sick to work to stay home and 1) rest myself, and 2) monitor the situation. We did wound care that afternoon and her left foot was just awful. the wound spread further out in all directions and now the entire top, side, and part of bottom of the foot is a blister. This poor foot has had maybe 2 days since birth where it wasn't injured.

On the bright side, I'm learning how to wrap her hands and fingers with 1" gauze and a cotton ball in the palm in such a way that is preventing new blisters, and keeping her hands in a neutral position, so there's a victory.

Ali had a BLAST at my friend Vicki's house for the Chapman University Music Therapy reunion yesterday. That was a good thing as well.

The best thing was returning to church this morning for the first time since this journey began. Our church is our extended family. They have loved us and cared for us since we first arrived in CA 5 years ago. Not a day goes by that we are not gifted in some way by someone in the congregation. It was so nice to be able to bring Bella to church, have Ali resume Sunday school, and personally say, "Thank you." I also got to sing "Bella's Song" during Offertory and that was just great. When the chorus repeats at the end of the song, I spontaneously told the congregation to sing along, and they did! Even though it was their first time (for many) hearing it, they had internalized it and I could here their voices floating through the Sanctuary mixing with mine. What a wonderful moment and perfect symbol of the interlacing of love, passion, and community we share at Harbor Christian Church. God is Good...ALL THE TIME!

Lastly, a concerned member of the congregation sat us down with our pastor to make sure we were doing everything we could for Bella with respect to pursuing research studies and clinical trials, as well as couple's support groups. She mentioned that 95% of marriages end up in divorce when there is a child with special needs. I knew that in the Autism world the number was 80%, but I didn't know it was higher overall. I was immediately reminded of the conversation that young man Sean Stephenson had with me early on. He is a clinical Psychologist, and he said to me on the phone, "Tim, Bella's situation is going to do one of two things to your marriage. It's gonna tear it apart, or make it stronger. You have to decide which one it's gonna be RIGHT NOW." Well, I did, and we did. We choose Bella, We choose her EB, and we choose our marriage, exactly as it is.

We had a tender conversation over dinner discussing this, and out of the conversation, we came up with a new concept. It's called simply, 5 PERCENT. It is a support group of parents of children with special needs who are committed to being in the 5 % of the statistic. The way we have always seen our marriage and life in general is you can create it or react to it. Sometimes, it takes a little of both, but now that Bella is here exactly the way she is, we get to create a new level of power and support for others just like us, and for this, we are truly grateful and blessed to be able to be of service.

We are so grateful for the show of concern. Our friend was afraid of overstepping their boundaries, but the context was love and genuine care, not judgment or fear. In that spirit, we say again, "Thank you" for having the courage to step up and share! Thanks to that conversation, the 5 PERCENT Collective has been born.

So, if you or anyone you know has a child or children with special needs, and wants to be a part of a group that affirms their role as creator and not victim, please tell them about us. We want to hear from them. It's easy to feel the victim when something like this happens, but that leaves us with NO POWER, NO SAY, NO FREEDOM to create the beautiful tomorrow that is just around the corner.

Now, since tomorrow is creeping around the corner faster and faster every minute I type, I now bid you fare well. May God bless your day, giving you momentum to flow effortlessly through the week. May He open your awareness to the blessings He is surrounding you with RIGHT NOW, so that all you see this week, starting RIGHT NOW, is bliss. Wherever you are reading this, I want you to SEE one of those blessings and post it here as a comment. Let us all know! THIS is what should be news, folks, BLESSINGS, NOT TRAGEDIES. Let us make our own news headlines on this page today. Let us remind each other that there is good in the world everywhere. Now, tell us what YOU see!

Bless you all,

Good night.

If She Gets Up Thrice...It's Down Right Diabolical!

I just accidentally erased this whole thing, so here goes TAKE 2....

So, the whole sleeping through the night thing? Just a fluke! Rats.

I figured it out...
If Bella sleeps through the night...it's a MIRACLE
If she gets up once...we get our 5.5 hours and deal with it, BUT
If she gets up twice...this represents an exponential loss of rest, AND
If she gets up thrice...(hehe I said thrice...a la LAST NIGHT)...it's down right DIABOLICAL!

Having put a moratorium on the caffeine weening has helped me a little at least. Ang, well, she's beat! I realized as I was drifting on the freeway the other day that I'd rather be full of caffeine and alive, rather than caffeine free and dead! So, Starbucks, I'M BACK HONEY! DID YOU MISS ME?

The sleep interruption may have something to do with the two big new blisters Bella gave herself on each foot. :( She was kicking like a mule the other night due to a bout with gas, and yesterday we found to biggies. The one on the left foot wraps all the way around from the top to underneath. Too bad too; the "bath incident" wound finally just cleared up.

Meanwhile, we have implemented a token economy with Ali and it is working like gangbusters (for now). She eats all her food, stays dry, and listens (for the most part). In return, she gets a new toy or DVD come each Sunday. It's good leverage, because she knows she can lose the privilege at any time during the week, and it's stuff we would have bought for fun anyway. Gotta love the proverbial carrot at the end of the stick trick!

In other news, there is a family with TWO new babies in CHOC with EB right now. Crazy. We have reached out and look forward to hearing from them. We have learned SO MUCH SO QUICKLY, it would be GREAT to pass it all on to save them some of the unnecessary pitfalls that can occur in those first few weeks. I sent them an email through Betty, our Angel of a PT, that outlined some basic steps to follow while still at CHOC to keep their babies safe as possible and offered to come consult on dressing changes. I really hope they call us. It would feel so great to pay it forward so quickly.

Lastly, here's the Providence story of the day:

In NICU music therapy, there is a device invented that stimulates preemies who are having trouble transitioning from feeding tubes to oral feeing. It never really got off the ground after just a few prototypes, and 7 years later, a second company attempted to pick up with a second generation of the device. I had met over the phone the Dr. who was heading up Generation 2 last summer. After being in the NICU, it dawned on me just how many babies NEED this device, and last week I pledged to myself that I would be instrumental in deploying it nationwide. Problem is, I heard rumors it was in a legal battle between the two companies. I tried to get in touch with the original inventor, but she is out of the country, so I rang Dr. Wren, the "Gen 2" developer, and she confirmed today that is is in fact d-e-a-d. The company that made Gen 1 and the company that made Gen 2 couldn't come to an agreement over transferring the license so it died.

I told Dr. Wren that I just had a baby with a rare skin disease that may or may not be fatal in the NICU, and as a NICU MT, I realized that this device needs to be in every NICU, just like the feeding pump that fed my daughter for the first week of her life. I told her that one way or another, I am going to be instrumental in making it a reality.

Dr. Wren replied, "Is it Epidermolysis Bullosa?"

Stunned, I replied, "Why yes, it is!"

To which Dr. Wren began, "Oh I am so sorry, Tim. However, you should know that I developed the first (some scientific name for a type of wound care product for EB) while doing research with Children's Hospital of London...." She continued for a minute describing exactly what her product does for EB patients. Her words faded away as I looked out the sliding door up to God in Heaven. I thought I was calling about NICU MT, but God had much more planned. Providence. What are the odds that this Doctor who is from London, who lives in Reno, who I meet while in San Diego, shares the same passion for NICU MT and EB? PROVIDENCE.

It doesn't end there, though...

Dr. Wren asked, "So, you're in San Diego?"

"No, I did my internship in San Diego. I live up in Orange County."

"Really? One of my companies has a manufacturing facility in Costa Mesa (only 20 minutes from me). Maybe next time I'm in town we can get together for a cup of coffee."

"No, Dr. Wren. The next time you're in town, I'm taking you to lunch to find out what exactly it is we are meant to do together."

"Well then, I look forward to it, and I'll call you when I'm coming to town!"

We part ways.

IF you believe in the Silver Lining, you will ALWAYS find it, IF you don't give up. God will NEVER give up on you, BUT the Silver Lining may take more looking than you at first expect. Do not be discouraged; God alone can see the big picture, and you may be standing right in front of the Silver Lining, but if you either give up or don't believe, you'll miss it. If you are having trouble finding It in any given situation, ask for clues. God will reveal them. Just be willing to deal with the fact that It may not be what you originally were looking for.

Just remember Bella's Song:

Don't be afraid
to ask for help.
God will always answer you
in His or Her own way.

God's love and peace to you all.

Good night.

Bella Slept Through the Night!

AT LAST AT LAST! BELLA SLEPT THROUGH THE NIGHT!!!!

WOOHOOOO!!!!!

You should have seen the look of panic on my face as I rolled out of bed at 7:30, looked at Ang, who was pumping, and realized I hadn't moved since I went to bed at midnight. I said, "I am so embarrassed! I'm so sorry! Did you try to wake me up?" Se just looked at me and replied," I didn't wake up either."

Then, we realized the truth: Bella hadn't either! We only get up when she cries, so no cries, no get up!

Oh, it was like a dream, though I must admit that I was so delirious from sleeping 7.5 hours that I almost fell over trying to get to the bathroom. I was quite a sight.

Oh, and the best part was that when I put Bella down in her crib in her and Ali's room, she was awake! She fell asleep on her own and slept through the night with her big sister!

[sound of Culture Club singing "It's a Miracle...it's a MIRACLE...it's a miracle...]

Gooooood stuff. Ang and I had so much energy today!

It gets better! Bella was awake and alert and mostly calm during dressing changes with no pain meds. There are currently five blisters that are mostly healed...one on her left knee, one on left elbow, one on her right cheek, one on left middle finger, and right calf. Left thigh has a bandage that can stay on for up to a week, so the blister under it is probably healed by now. We'll take it off Wednesday to monitor.

If all goes well on Saturday, she should have no open blisters anywhere, and we plan to unwrap both hands to do a little baby photo shoot in the home before re-wrapping for a music therapy pool party/reunion Sat evening! I can't wait to get a picture of her hands! You've never seen them! All the while, Bella coos and and smiles and locks eyes most of the time. She still is dealing with a little spit up and gas which brings on the crabbiness, but it's totally manageable. She ROCKS.

On a separate note, THANK ALL OF YOU who wrote "I AM IN" on the site! What a huge and wonderful response from all over the country! Here is the deal: I don't want to pursue that vision using this site, this is for Bella's progress. So, I made a new blog for all those who want to play in the manifestation sand box.

www.thedivineplanet.blogspot.com

It will be located at www.thedivineplanet.com soon, but I am having challenges getting the name and the blogspot site to talk to each other! For those interested, please go there and read the post for more instructions. For those who want to just stay on the sidelines, feel free to come visit us on that site! I am going to restrict how much progress on that front I publish here. I want to keep this more about Bella than me, and even though that vision affects and involves her, it's better left on its own page I think.

See you over there!

May God's blessings shower you with all good things in this divine moment. Thank you for being a part of our lives. This whole journey would have gone very differently without you. Good night.

The Perfect Angel Within

Look! I'm 22.5 inches and 10 pounds 6 ounces! I'm a growin'!

Bella checkin' out the Carousel at Disneyland...oooooh, bright shiny lights spinning round and round!

So much to share...ok, here goes.

Thanks to the inspiration of the thousands of success stories on The Secret website, the book The Secret, and the coaching of a dear friend, I am going to share 1 MONSTER INTENTION and 2 breakthroughs I had today with all of you.

FIRST BREAKTHROUGH:

It dawned on me today that Bella has more power and strength than any of us can comprehend. Here's why:

Since even before her birth, her body has had open wounds. Remember, she was born without any skin on much of her left leg. She has never known any other experience than having open wounds. Today, she coos, giggles, smiles, and interacts as much as any baby at 2 months we've ever met. Yesterday I cut my finger at the fingernail playing my guitar and it HURT. Bella has many more times the wound I have on my finger, and she goes through her day like she doesn't have any.

How can that be? Because she has never known anything else. Like water to a fish, her wounds are invisible to her. Sure, when she cracked that hole in her leg, it was pretty visible, but as her many wounds are in a perpetual state of healing, she just sleeps, eats, HEALS, and goes through her day like any other kid her age. She doesn't know she has EB. she just is. We're the ones all messed up over her diagnosis.

It was inside of this revelation that her EB disappeared to me. I don't see it any more. I just see a cute, sometimes fussy, 2 month old who is so cute that when she is making eye contact with me and smiling, I am frozen in time in a state of bliss, wonder, amazement, and total love. Time stands still when she smiles at me, or even more so when I see her smiling at mommy or Ali. She LOVES her big sister. It is truly magical.

I didn't realize when I was creating the vision that once she came home from the hospital [the EB] would go away, it was for me, not her.

Perhaps you did, perhaps not. Either way, thank you for holding your vision along with me. Miracles occur.

After all, the lyrics in Bella's song state:

"But don't be afraid to ask for help
God will always answer you
in His or Her own way."

Thank you God for taking the EB away, and revealing the perfect angel within. That is who I see now. I am so blessed by You God, thank you for the miracle that she already is.

SECOND BREAKTHROUGH:

I realized today that there is no difference to God/The Universe between 1 dollar and 1 million dollars. We humans are the ones who value money and we humans declare that making a buck is easy, but making a million bucks is hard.

Why?

A million bucks is simply 1 million easy bucks made. If 1 dollar is easy money, 1 million dollars is A LOT of easy money.

There is no "hard" involved in the equation. Grass doesn't strain to grow. My daughters do not strain to grow. In fact, they grow in their SLEEP. "Hard" might just be an invention we humans created to justify when results don't meet expectations.

So. It is my job to declare and share my vision with clarity to The Universe, without "knowing how," because it has been demonstrated time and time again, that when you declare your intention, then events and people line up in alignment with that vision.

For example:

Last summer, I completed my internship in San Diego. I did not want to commute 90 miles each way each day for 6 months, so I created that someone in SD would allow me to live in their home FOR FREE while I completed my internship. I BELIEVED that God wanted me in SD to do the work I was doing with developing NICU MT, working in Hospice, etc. I genuinely believed that God has provided for me this whole journey to California and through music school, so why would God stop providing for us then? So, without knowing more than one family down in SD, I just began DECLARING that it be so. Well, long story short, one night, I got an email from a woman I had never spoken to explaining to me that she had a home for me to use. Not a room, a HOUSE. Turns out, they were relocating to Michigan and were putting their house in La Jolla on the market. I could live in it for the entire internship, unless it sold. Again, I had NEVER EVEN MET THE WOMAN!

I ended up with a 4 bedroom home in La Jolla, CA 10 minutes from my internship site for free for 6 months.

At the time I declared it, I had no evidence for why it would come to be except for my belief in 2 things:

1) There is more abundance available to us than we can comprehend, and
2) All we need to do is get clear about what it is we want, declare it into existence, and believe it can be so.

Ever heard the phrase, "Whatever you conceive and believe, you can achieve?" (or something close to that...)

Anyhow...I share all that because I need to be reminded that I have already created from nothing many many times. In fact, I declare that I am blessed to be a master of manifestation! I am a master creator!

Therefore...

THE INTENTION:

I AM DECLARING TO THE UNIVERSE THAT I AM MANIFESTING $1.2 MILLION DOLLARS IN PERSONAL INCOME BY MY BIRTHDAY ON AUGUST 31, 2009.

$100,000.00 will go to DebRA and another $100,000.00 will go to the EBMRF. That leaves $1 million for my family and me as a gift from God/The Universe.

THE REQUEST:

Who wants to play this game with me? If you want to hop in the sandbox and play, send a post simply stating," I AM IN." We'll iron at the details as they are revealed, and let me tell you, they are already at work in ways I'll be telling you about real soon I'm sure.

At first, I was PETRIFIED to share this with all of you, for fear that you might think I've gone off my rocker. However, after reading this over, I am actually filled with humility, confidence, and GENUINE BELIEF THAT IT NOT ONLY CAN BE, BUT ALREADY IS. Time just now needs to catch up with the vision I hold in my mind.

Will you hold it with me? Even if you don't want to jump in, I humbly request that you set aside any judgements or fears, and BELIEVE IT CAN BE, and HOLD that space open for us.

LET'S DO IT!!!!!!!!!

May my words convey the love and gratitude that I have for you that you take the time to read this and generate this possibility with me.

May God bless you all, and I look forward to hearing from you!

There is a ring finger under that blister somewhere. She never even made a peep about it. We took off her mitten and almost fainted!

Bella's Latest Milestones

Hi all!

Seems like I'm not getting around to this site as much recently. I think there are two reasons for that.

1) New developments on Bella's condition aren't emerging with the same speed as early on. We are in a routine of care that involves dressing changes every other day. We almost made it through yesterday's dressing without having to break out the needle (to pop a new blister), but alas, we found a big one on her left knee when we undressed the final appendage of the session. So, pretty much every dressing change follows the same sequence: right hand, right elbow, right leg - switch Bella around on table - left hand, left elbow, left leg. Each time, there usually is at least one new or recurrent blister, and the other existing blisters take 1-4 weeks each to heal, depending on severity. It still takes 30 minutes of prep and 1 hour of treatment. It's not getting any faster, but it's getting easier. The fingers are really Bella's biggest problem area. They just can't seem to withstand any impact with any objects without BALLOONING. We have to wrap 1-3 fingers on each hand almost all the time due to some recurrent blister blowing back up. That's a drag. The good news is that Bella's left foot will be totally closed again by tomorrow when we redress it. It has been healing fabulously. Take the good with the bad seems to be the name of the game.

(BTW - the Care Pages photo gallery is having issues right now or I'd post new pics)

2) I am working and just don't have much free time to update...(smoke screen to cover that....)

...really, I was fearing that you all would eventually wear out from the constant writings and would just go away. So, I beat you to the punch by pulling away first. Call it a trigger-finger defense mechanism...if I leave first, you can't hurt me! Yep...I admit freely that I made it all about me and not Bella. No biggie. Just me being a human.

Just typing this offers me the gift of reflection; I hadn't seen that this is what I was doing till I started typing this! Ah...insights. They never get old.

In other news, Bella's 2 month check up was yesterday. Can't believe it's only been 2 months. Feels A LOT LONGER THAN THAT. 10 pounds 6 ounces & 22 inches. 40th percentile in height and weight, 70th percentile in head circumference. Doc thinks she looks and sounds good. Music to our ears.

Tonight, Bella is sleeping with Ali in their room for the first time! Ali is SO excited! Ali started sleeping through the night the night after her 2 month check up so....[fingers crossed]

We took the family to Disneyland on Friday night! We went for a meal and a 2 rides for Ali in Fantasyland. It was a success! Ang bought an AWESOME new double stroller (1 up front & 1 behind) and we took turns going on rides with Ali while the other chilled out with Bella. Bella loved the lights! It felt great to do something 'normal' as a family. That is going to be key in all this I can see.

Ali started Horseback riding lessons on Saturday. She left crying because they didn't give us an itinerary for the 4 week program till we arrived on week one, and in session one, the kids learn to clean and bridle the horse, so Ali was really sad since she thought she was going there to RIDE a horse. Now that we have the itinerary, we can prep her accordingly. Good job, City of Orange. Maybe send out the itinerary in advance? I'll pay an extra buck to avoid having my kid crying after day one.

Gift certificates and food continue to flow into our home from near and far. We are so blessed by the abundance of love and support we ongoingly receive. Thank you all for all of it. It is overwhelming, and it is a great feeling.

Last but not least, BIG THANKS to grandma (Ang's mom - my mom goes by Nanny) for agreeing to:

1) come and clean our house once a week and
2) watch the kids for the whole weekend in Nov. so we can get away to Disneyland for our anniversary and be kids ourselves!

Ang's mom came and cleaned today while I was at work, and when I walked in the door...it was magical. It felt so...clean and orderly...I could feel it as soon as I walked in, even before I realized what had happened. Then, I went into the bathroom and as I was washing my hands, I could see my reflection in the faucet...that really gave it away 'cuz I NEVER clean the faucet that well! Having a clean house makes me feel so much more at peace, it's amazing. Thanks again grandma for providing that peace! We love you!

Okay, good night. When the Care Pages photo gallery is working again, I'll post new pics and send a quick update. Thank you all again for taking the time to read this, send prayers, cards, gift certificates, positive thoughts, energy, vibes, wishes, et cetera. It all matters, and it all contributes to all of us and we are eternally grateful.

God bless you all.