A Golden Billboard

With so many holiday events this month, I usually pick and choose which ones I will attend with Ray. Earlier this week he mentioned that Kapiolani, the Women's and Children's Hospital, would be hosting a tree-trimming ceremony tonight. I was confused since the hospital had a tree-lighting ceremony last week, and I was about to claim "overkill!!" when he explained why there were two ceremonies, and what made this one special.

Tonight's ceremony was scheduled at the church next door to the hospital, Central Union, and was concieved to allow the families of children who died at Kapiolani to gather and honor the memories of their children. I started crying on the phone as Ray described the event, knowing that it would be painful to be there, but also knowing that I must go.

Central Union church is special to me because its steeple always remains lit. During my all-night PICU vigils, the church's physical structure reminded me of Christ's presence with me, while the steeple light reassured me of His love. But, although I sometimes escaped to the grounds of the church to pray, I'd never actually been inside. Until tonight...

It is by far the most beautiful church I've seen in Hawaii, with soaring ceilings and pillars. As Ray and I entered we were introduced to the pastor, and I'd just begun to thank him for always keeping the steeple light on when I caught my first glance of the front of the church. I stopped speaking mid-sentence and tears filled my eyes. There, above the huge white cross were gold letters that had to be five feet tall. They simpy said "Love Never Faileth." The same words, in fancier syntax, that I whisper to Abbie...Love Always Wins!

I couldn't believe that inside the church which had given me so much comfort were the three words I've clung to for so long. I felt like I had been ushered in to the very heart of God and had found what I knew was there all along. My hope isn't reckless and my dreams aren't delusional, because Love is a Person, and He never fails. So many times I have prayed for a "billboard answer" from God..do we keep Abbie on life-support or let her go? Do we pursue this therapy or that one? How do we best love and support the boys through all this? I've never gotten a neon sign, but tonight I received the only billboard I will ever need, because it answers the deepest questions of my heart.

Those three words brought me great comfort during the ceremony, which was heartbreaking. I almost felt like an intruder because, although we know some of the pain, we have never had to bury a child. Each family went forward, read their child's (or children's) name, a bell was rung, and then they hung an ornament. It seemed to go on and on, until three trees were covered with special tokens of love mixed with grief. All I could think was, "Thank you God, that Abbie is not just a name on a paper and a ring of a bell." No matter how hard the days get, or how my heart despairs at times, I will never forget the weeping parents in the pews tonight...their tears renewed a right perspective for me. Each day with Abbie is a precious gift.

Quite a ways through the ceremony we heard a name we recognized, one which we hadn't heard in over two years. Justicia was a very special little girl, born with a face that looked very different from other little girls because her bones were fused together. She was in the PICU the same time as Abbie, and initially we gasped when we saw her. But, as the days passed a funny thing happened...she transformed into the most beautiful girl. Actually it was our hearts that were transformed as we looked at her through God's eyes. She died while Abbie was still in Bed Space 14, and being consumed with Abbie's care at the time, I didn't get to say good-bye to her mother. I was so blessed to catch up with her after the ceremony, and initially was too emotional to even speak, so Ray had to explain who we were and why we were so glad to see her. Justicia had a profound impact on us as we were just beginning life with a special needs daughter, and tonight was a very sweet tying up of loose ends.

As for our Abbie-girl...she had a check-up yesterday and now weighs 41 pounds and is 42 inches long..right at about the 50th percentile for each. I am pleased that she is doing well proportionally, and is healthy overall. Today she lost her left front tooth, so now she really looks like a pirate when she grins. Actually, what it makes her look like is a much older girl. This afternoon I was sad about that, but after the tree-trimming ceremony I am just thankful that she is getting to lose teeth!

We had a great OT session yesterday. We focused on hand/arm movements, choice-making and vision...sounds boring for a five-year old until I tell you that we accomplished all that by playing dress-up with a magnetic doll. Abbie got to choose what to put on her, and always ended up with coordinated outfits, right down to the shoes. It is easier for her to look to the right, so after a few choices, Patty put the shoes which would obviously be more appealing to Abbie (pink slippers with polka dots) on her left side. She chose them! We then asked her if they were purple, and she immediately nodded her head "no". Patty was also making Abbie help put the pieces on the doll. I asked her if she was doing the whole movement for Abbie and she said that before she helps, she waits to feel some sort of initiation. This made me very happy because while Abbie is not yet able to do the whole movement herself, she definately understands what she is being asked to do and what parts of her body she needs to use to accomplish the task. I feel like as long as we have the building blocks there is nothing she will not eventually be able to do herself. There is not one area where we have absolutely nothing to work with. I even confirmed with Patty what she was seeing as far as vision, by asking, "If I told a doctor that her therapists feel she definately has some vision at least some of the time would you agree with that?" and she said she would, especially after observing Abbie make such intentional fashion choices.

So, all in all a good week. The Bible says that hope deferred makes the heart sick, and I can tell you I know the truth of that from experience now. I have been struggling a bit, just having another holiday season with Abbie in a wheelchair, unable to partake of so many things that make this time of year special. Tonight, I realized however, that I've been focusing on the wrong part of that thought, the "unable" clause loomed large and obscured the cause for rejoicing, "another holiday" with Abbie! What the families I met tonight wouldn't give to be able to say that.