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.
