Sunday, July 5, 2009

One Step Forward, One Step Back

Well, hello everyone. Sorry it's been a while since any updates. Well, that's because there hasn't been much to update about. Bella's old wounds get better, but she continues to get new ones. One step forward, one step back. We are struggling with the reality that this is what it will be like every day of her life. We've been praying so hard for things to just "go away," that new or recurrent blisters almost feel like slaps in the face. We feel like somehow we are letting her down. Some of the blisters go away and stay, some just keep recurring. It makes us question whether Bella will ever be un-bandaged. One day at a time. One day at a time.

The good news is that her gas is subsiding. After just about a week on Zantac and Culturelle, coupled with Ang discontinuing spinach (spinach gave Ali bad gas as a baby), Bella has been mellow, almost serene today. That's a good thing because yesterday she was miserable all day and evening. We were told there would be good days and bad days, and those EB parents were right!

Here's a great Providence story from this past week I forgot to write about.

While at the EBMRF picnic last Sunday, a woman stopped me to ask me if Bella was an EB baby. She said her granddaughter had EB and she wanted us to meet her. Her name is Noelle, she's 8 , and lives in Irvine. The grandma wrote Noelle's mom's name and phone number on a piece of paper for us and we all went on our way.

Two days later, our neighbor Robert dropped by. Robert and his wife Katherine gave birth to a boy, Julian, three weeks before Bella. We don't know them well at all, but when they found out about Bella's condition, Robert came over and told us if there was ANYTHING they could do, let us know. Anyhow, Tuesday, Robert appears at the door with a gift for Bella! We talk for a little, then get back to dinner. As I open the box, a cute baby outfit awaits inside along with a card. As I read the card, there is a P.S. paragraph on the left side of the card. (You know, the part where you actually write something personal). Anyhow, the paragraph reads, "We want you to know that my sister in law has a daughter with EB and would be happy to talk to you and help out in any way. She lives in Irvine and..."

The name and number? Same name and number that was written on the note from Grandma.

Katherine had no idea we met her niece just two days prior.

In a metropolitan area filled with millions, and with a diagnosis of only 10 in a million, what are the odds? Too great for coincidence, leaving once again, only Providence.

On a separate note, I went back to work at UCI Medical Center this past week. I work in oncology, and the two sessions I had with two patients while they underwent chemotherapy were two of the best sessions of my brief career. The level of empathy and empathic listening was unparalleled, and the authenticity I was able to tap into created such a safe space, the two patients opened up about all sorts of things related to their journey through cancer. One patient even recalled the birth of her child and having to go home from the hospital without her due to her being only 4 pounds. No one can explain to you what that is like. It is the most "wrong" feeling on the there is something terribly wrong with the planet and there is nothing you can do to undo it.

I realize that my own suffering has created a new level of connection with my patients, and I am grateful for the tender sessions we had this week.

There really is always something to be grateful for, sometimes it just takes a little reflection to see it. Thanks to you, this site allows me the opportunity to reflect and share these reflection with you. Your feedback continues to strengthen us as we brace ourselves for the marathon that we thought was just a sprint.

May the abundance of God's blessings be upon each of you today.

1 comment:

  1. Comments from Care Pages Site:

    Posted Jul 8, 2009 8:04am
    by Jennifer Thomas

    Tim- I never told you guys that I knew about Noelle from the first week Bella was born. My friend Carol, knows of Noelle's family also. Her daughter Olivia babysat Noelle's older sisters when they were younger. Six Degrees...smaller world than you realize.
    Posted Jul 7, 2009 9:48am
    by Russ Baldwin

    We continue to pray for God's love to be upon you all and for the complete healing of Anabella. The connections you are having with patients is providing a special kind of healing.
    Love & Prayers
    Russ & Jen
    Posted Jul 7, 2009 8:41am
    by Trazona Montague

    All you and Ang have to do, is keep doing what you are doing and God will take care of the rest.

    The will of God will never take you where the Grace of God will not protect you.

    Posted Jul 7, 2009 8:36am
    by Jan Pflaum

    What I have found so amazing is that when we go thru such difficult times how it makes us better human beings, more loving and compasionate. We thought we had all these emotions inside of us and we displayed them but not to the degree after our most difficult challenges. Without true love for others we are nothing............. Keep up the good work and praise God Bella is making progress. Love goes to your precious family.........We keep praying....Love, Jan
    Posted Jul 6, 2009 11:03am
    by Doug Gleason

    We and our bible study group here in TX have you in our prayers.
    All our love,
    The Gleason's
    Posted Jul 6, 2009 8:43am
    by terri wiener

    Thank you Tim for sharing your story. My best to all of you.
    Posted Jul 5, 2009 9:53pm
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    Your story of the gift and the note with the phone number gave me chills! You are gaining so much through this experience though very tough on all of you and little Bella. She is just beautiful and looks like both of you! I think back to when we knew you here in AZ and I bet back then if you were asked if you could be as strong as you have been through this you would have said no way! You and Angelique have been and continue to be SO strong! Take it easy on each other and know that there is a plan. Our intense prayers continue.
    -Michael and Robin Setto
    Posted Jul 5, 2009 9:22pm
    by Denise Dew

    Tim & Ang,
    The CROSS God gives us to bear in life is often bitter sweet-the good with the bad. We often never know when we are going to get these struggles we get. YOU both know I KNOW! But WE DO get through THEM. Because we, always ALWAYS have to have to stay FOCUSED when it seems it's hard in the midst of the hardest times, that GOD is RIGHT THERE with you, watching you Ang, change those bandages with those soothing fingers. Tim struggling with getting little Bella queited God IS WITH YOU! Those providential messages are clear indications that God's hand directs people to the places He wants them to move in.
    Thank you ALAWAYS for sharing. You guys make my prayer life stronger.
    Posted Jul 5, 2009 9:22pm
    by adrienne sandusky

    Tim and Ang...great meeting Bella
    @ "Grandma's" house on the 4th, so cute to see Ali showing off her baby sister...good talking with you Tim on "providence" and it's true meaning...just proving you are NEVER to old to learn. oxox Adrienne and Lee
    Posted Jul 5, 2009 9:09pm
    by Becky Stone

    I've been quiet a while, too.....but I haven't forgotten; I've been praying for all 4 of you. Thank you for always sharing how God is working despite the discouragement of the day to day struggles. My best friend just had emergency surgery, and we've been talking about finding gratitude and purpose in the midst of everything. You have blessed me tremendously with a wonderful picture of just that. Isaiah 43:1-4