November 5: The Phoenix EB Gathering

Heaveno!

Before I begin, I need to share with you that baby Elle passed away last night just two doors down from where Bella died. We are so sad for her family but happy for her, as she is now floating up there with Bella and Sarah and all the other EB babies and kids in Heaven. Please take a minute to visit the Pop's blog and send them your condolences. Thank you for doing that.

Well, we had our final Gathering on the road today in beautiful Paradise Valley, AZ. The Franciscan Renewal Center is truly Holy Ground. It has been my spiritual home since 1997 when we had my dad's funeral there. Since then, my mom got remarried there, I went to counseling there, we had my step-dad's mom's memorial service there, and now Bella's gathering as well. In addition to all this, I used to sing in the choir there in 2003, and since 2007, I co-lead a twice a year retreat on grief and loss.

It was incredibly funny seeing the posters for our upcoming retreat in December on the grounds as I was setting up to do some grieving of my own! I will not be leading the December retreat as I am in the middle of my own grief right now, so it wouldn't be appropriate for me to try and facilitate at this time. Imagine how much more useful I will be on that retreat now having gone through this. I have lost people in my life that were in the generation above me (dad), my generation (my 5 best friends all at once), and the generation below me (Bella).

Anyhow, today was just wonderful. We saw friends and family, and met a few of you blog readers as well! Once again it was great to now place faces with names. There was another EB family from Phoenix that came out, the Hendricksons, and they have a 4.5 year old daughter, and an 18 month daughter with EB simplex. She was born two weeks before Bella, so our families have traveled a very similar timeline of growth. It has been so helpful meeting these other EB kids and their families along the way home. They bring us such joy, as Bella did. EB kids are unusually strong, and they are just GREAT to be around. I miss being around Bella and witnessing her strength. She made me so much stronger just be virtue of trying to keep up with her strength!

There was a hilarious moment when Katie, the big sister to the child with EB said to Ali, "Bella died because she had too many boo boo's," to which Ali pointed her finger at Katie, blinked an eye, and replied, "R-R-R-Right." It was so matter-of-fact and concrete, just like kids at that age. Rob, Katie's dad, was mortified at Katie's frankness, but Ang assured him that it was just fine. That's how 4.5 year olds talk about life and death. There is no story yet, no drama, just the facts. There's still a lot of heaven left in them, so I don't know if it even is the same experience for them at all. They have lived a shorter amount of time, therefore they are not as susceptible to the myth of permanence.

With each event, our hearts heal a little. With each event, I feel like I am becoming more and more... me. Tonight, several of our old friends took the opportunity to speak in front of everyone about how this whole journey has impacted them. In addition to speaking of this, it was really neat to hear what a difference they now witness in us. Ang and I lived in Phoenix from 2000 to 2004, so it has been a while since we had seen quite a few of of our friends. To hear what a difference in transformation and growth they have seen was very inspiring. You cannot observe your Self in the same way others can, since you can never detach yourself from yourself. So, no matter how much reflection one might do, there is an element of blindness in self reflection. There is a view that others have of you that is distinct from your own, and to hear what that view looks like from people who know us now, but also knew us then... well, it really made me feel like we've come a long way, baby!

So, tomorrow we complete the last leg of this journey home. I am not looking forward to it at all. This journey has been a wonderful buffer from the cold hard reality of a home without one of your children in it. The car seat was a tough one to deal with in MN, but think of the things that await... the crib, the high chair, the wound care supplies under the vanity, the bottles, the medicine box, the clothes, etc. So, as much as we are happy to get Ali back to a normal schedule and life, well, right now, home feels like it's going to hurt more than heal.

Now, I know there will be instant thoughts and reactions to the above paragraph that will run the gamut, but while we've been on this journey across America, I haven't been able to notice Bella's absence since we never did a road trip with Bella before. When we go home, all my activities of daily living will be done inside of that thinking that goes, "The last time I did X, Bella was right there." I think Tom Hanks' character in Sleepless in Seattle articulated this very well when he said something to the effect of, "Every time I turn the corner, I see her, because we did something together at that location." (I know I butchered that, but I think I got the spirit of it) Bella's absence will be more noticeable, that's all I'm trying to say.

Lastly, I don't want to stop preaching and bringing people together. I know that this blog allows me the opportunity to preach my 2 cents to countless people, but there is an element of shouting into the darkness with the blog that face to face interaction doesn't have. I don't know how this desire will express itself going forward after the CA memorial, but it needs to.

Alright. Need sleep. Some day, I'll read all this and laugh since I usually write as the last activity of the day. I know that I have no idea what I wrote 2 nights ago. Sometimes, I can remember what I wrote the night before, but often times, if I go read an older post, it's like I'm reading it for the first time!

Here is a slide show of yesterday's journey. The footprints are one of my favorites, as is Ali doing mommy makeup. The egg happens to be from a free range farm, and the farm's initials are EB, and they are currently doing something for the Susan G. Komen Foundation, hence the pink ribbon. I just couldn't believe it! You can imagine my surprise when I opened the box and saw A DOZEN eggs like that!

God night.