Monday, August 10, 2009

The Five Percent Collective Has Been Born

Happy Monday! Since most of you will read this Monday 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.


  1. I am so happy I found your carepage!! This is Tanya from the CHOC NICU (day shift), I took care of little Bella during her stay! I am so thrilled to see how well she is doing! As you posted we had twins with EB in the unit. Because we all had such an experience with Bella's care, I signed up to be the twins' primary nurse the night they were admitted. Beverly, Betty and I were all there and ready to give them the best treatment possible, and it is all possible because of the miracle of your family. I feel so lucky to have been one of your nurses and done research and helped to educate the other NICU members to the care of EB patients. I want you to know that Bella has made me so passionate about giving being an advocate for giving the best care to EB patients, and I'm happy to tell you the twins were discharged within a week!! I wish all of you the best!! Tanya Kamka

  2. Hi Tim & Ang,

    Well my parents have been married for 37years. Their marriage has survived not only with my heart disease, but with my fathers cancer (now cured). Unfortunately, the statistics you mentioned are true, but know that several of my friends with medical diseases, their parents have been married just as long as mine, if not longer. It's unique that you brought this subject to attention, because this is exactly what I wanted to do my thesis on (as an msw), but wasn't able to pursue if I wanted to graduate in time. I have many research articles on the struggles couples and families go through. I just want to encourage you that you can be that 5%!

    Blessings on a happy and healthy marriage.

    All our love,
    Erica & Jay

  3. From Care Pages:

    Posted Aug 14, 2009 1:59pm
    by Russ Baldwin

    Hey Tim, Ang, Ali, and Bella,

    Sorry not to have posted lately, but please be aware that we have you in our prayers everyday.

    About three years ago we had a friend, Joan, pass away from cancer. She loved God with all her heart, and God was in everything she did. At her funeral there were probable about 900 people more than the church could hold. She touched some many lives and was truly a blessed witness. During her treatments she lost weight, lost her hair, and had all of the side effects of chemotherapy. But that never stopped her, not her love, not her being, nothing, she was truly a being of love. One of the things that really has stuck with me was that she never played the victim. I remember she said "I am always tired and in pain, but when my family wants to do something with me, I get up and do it. I am going to be tired either way so I may as well get up and enjoy my family and their love". She never played the victim, I can see you are traveling the same road.

    Love and Prayers
    Russ & Jen
    Posted Aug 11, 2009 8:54pm
    by Terri Rochford

    I see an absolutely incredible family. God Bless!
    Posted Aug 11, 2009 8:05pm
    by Steve Williams

    Creating and causing - it's all there is to do. This is a study in mastery - truly inspiring.
    Posted Aug 10, 2009 1:59pm
    by vicki hurst

    It was great seeing you guys the other day. I'm glad to have met Bella and see how beautiful she is, I also enjoyed seeing you and Alli have time together in the pool. We will continue to pray for your family. Next time we will have to break out the instruments. Vicki
    Posted Aug 10, 2009 11:23am
    by Marie Bresnahan

    Your marraige will end up stonger for this. You will be in teh 5% and will spread the love through your example so that other couples can see how it can be done!
    Posted Aug 10, 2009 10:13am
    by terri wiener

    You and your family are such an inspiration!
    love, Terri
    Posted Aug 10, 2009 9:32am
    by Jennifer Higgins

    I'm telling you, each time I read your posts it is another chapter of your book! Writing this journal is therapeutic for you and reading it is hope for others.
    Posted Aug 10, 2009 9:20am
    by Sara Cooper

    We are in Ohio, so sorry we missed you Sunday!
    Hopefully, we will see Bella soon!