Marathon update

Consider the title of this update fair warning. A ton to catch up on. I was pondering just letting it slide and only giving a few highlights, but these updates are also for Abbie one day, and I want her to have the whole story.

Weds. 11/15

I was fortunate today to attend a conference called “Hilopa’a”, which in English means “to braid firmly”. The conference gathered players from all segments that impact on the lives of medically fragile or developmentally disabled individuals. In the opening remarks I was blessed and encouraged to hear about so many things that started in Hawaii, including Early Intervention and the Medical Home movement (keeping kids with their families rather than in institutions.) It renewed my hope that even from these small islands we can change things for the better.

The opening session was nearing its close when I answered my cell phone because Ray had called a number of times. I thought it would be normal logistical stuff…who’s picking up which boys etc…instead I found myself doubled over in my chair, fumbling around the tabletop for napkins to cover my sobbing face after he told me that Everett McDaniel had just come into one of Ray’s ERs and died.

Those of you who knew Everett need no explanation for my response. For those not blessed to meet him on this side of Heaven…Everett was a mountain of a man, both physically and in heart. A leader in our church, he came with the elders after midnight one evening to lay hands on Abbie in the PICU, and seeing his huge, gentle hands laid on her tiny hurting body brought me such peace. But most of all, Everett gave the best hugs ever! Between my sobs that’s all I could say to Ray, “No one give hugs like Everett.” A welcoming smile and a warm hug awaited everyone entering our church on Sunday morning. Everett taught all of us how meaningful something as simple as a hug can be.

I continued crying unabashedly down the hall to the first breakout session. A woman who had been sitting next to me when I got the call, caught up with me to give comfort. She related that she had been reading Abbie’s site since the beginning and had been so blessed. As we talked my eternal vision was renewed, and I realized that at that very moment Everett was in Heaven..wow!! I was crying selfish tears, because I was going to miss his hugs, but he was rejoicing.

Almost losing a child makes Heaven so real, and the battle to bring her back fills me with anticipation of when the fight is over, every tear is wiped away, and we enter into perfect joy. Everett’s homegoing has also made Heaven more real because now I can clearly envision who is going to be greeting me at the gates, with a warm hug, big smile and probably wearing a white-on-white Reyn Spooner shirt.

The first breakout session was informative, but I was thrilled by the second. I knew it was for me just by the title. “When Strangling Isn’t an Option: How to Work Well in Difficult Teams”. There were about 50 professionals in the room, 4 panelists, and me. I listened for quite a while about how teams can work together well, how trust is built, and how decisions can be reached. This discussion focused on the IEP process for special needs kids in schools. Finally I had to rain on the Peace and Love Parade and inject a little reality. I related our IEP experience, of not being privy to much of the information discussed away from the table, and even decisions made without our knowledge, let alone input. I remarked that because of the broken trust we had to walk away from the table and continue to home educate Abbie to this day.

The Department of Education panelist spoke and within one minute had said the word “constraints” five times. Parents needed to understand the constraints of the system, the schools are under constraints etc. This was familiar and expected, so I just let it pass. Then, an angel was revealed. He was another panelist, representing the Board of Education. He said something to the effect of “I don’t buy the ‘constraints’ thing. You need to be focusing on the needs of the kids first, and trying to figure out how to meet them.” I started crying. To hear someone in a position of influence advocate for our kids was overwhelming and unexpected. Later in the session he also remarked that there needs to be an “attitude change” at the principal and school level. He didn’t concretely express what this change referred to but it’s well understood that complex specials needs kids are seen as drains on resources who are not going to improve, and therefore are unworthy of investment. Principals have been recorded saying this to parents in IEP meetings recently, so this is more than just a perception. I left there with more hope than I’ve had in a long time, and if you ever get a chance to vote for this angel in a Board of Education election, I beg you to do so. Check the box for Garrett Toguchi, and thank God there are people like him fighting for our kids.

In the final session, God used the exercise to remind me of just how blessed I am. We had to fill out a “Natural Supports” worksheet with four concentric circles. The inner circle was the “3am circle” — people you can call for help at three in the morning. The next circle was “good friends”, the next was “acquaintances” and finally “paid supports” I had to use just initials to fit people in my “3am” box, and still didn’t get everyone in. As we went around and shared our results, I found out that I was almost the only one in the room with anyone except immediate family in the inner circle. I didn’t even work on circles 2 and 3 because again, there were just too many names. This was inconceivable to everyone around me, and made me realize anew how God is carrying us through this – with your hands!

The other thing it made me think is to ask each of you, wherever you are, if you would reach out to a family with a special needs child. Understand that they may not return phone calls often, if ever. This isn’t lack of desire, or flakiness, it’s just sometimes impossible. Simple kindnesses are profound to a family that may feel isolated. Stop and talk to them when you see them out and about, encourage your kids to interact with theirs, don’t be afraid to ask questions, find a way to include them. These things have made all the difference to us, and to Abbie. You may one day find yourself in someone’s “3am circle” and will be blessed because of it.

Thurs. 11/16:

Abbie’s tone had been a little higher lately, so I really didn’t know what to expect at PT. We decided to try to get her on hands and knees with the sling again. We raised her a little, but her knees weren’t wanting to bend much. I tried to keep my spirits up by focusing on how well she was doing with her hands, arms and head. Even though it didn’t look like we could get into a true crawling position we decided to raise the sling anway. Once it was at a height to allow her knees to bend to 90 degrees they just melted into the mat, simple as that. We ended up having a terrific session, and at the end I was relating highlights of the Hilopa’a conference to Lynette and Patty. One takeaway point was to ensure we celebrate victories, no matter how small. Lynette looked at me and said, “Well, today is definitely a session worth celebrating.” I grinned at that, because it’s sometimes hard for me to judge what is a good session and what is a great one. I am so proud of Abbie!

Friday, 11/17:

Another little vomiting episode impacted Abbie’s sats in the morning and made her participation in the afternoon Speech group questionable. I laid down to take an early afternoon nap and awoke to find Abbie in her wheelchair, all set to go. When I asked Debbie if we should go to speech, Abbie hit her switch, blinked her eyes, raised her legs, and in all ways available, shouted, “YES!” So, with her sat rates good, we took off.

These sessions are a real respite for me, because while Abbie is enjoying her friends and doing good speech work, I get a break and some time to spend with other parents. We chattered away the hour-and-a-half in the snap of a finger, and then went down the hall to collect our group of singer/artist/reader kids. The therapists were raving about how responsive and engaged Abbie was – they have really seen changes in her these past two months. They were doing a painting project and Abbie didn’t much care about it until she noticed what a mess it was making on the therapists’ hands, then she couldn’t get enough. A great afternoon!

Saturday, 11/18:

Another little peek into Abbie’s personality that confirms she is the same rascally girl. Ray noticed that every time I said the word “nebulizer” she would have a little cough. Not a productive one, and not one that took much effort, just a little one. Just as I was preparing to actually give her a nebulizer I said the word again, and she gave her little cough again. Ray said, “Abbie, even if you cough you still have to have a nebulizer.” Out came her little dimple. Busted!!! She’d been trying to get out of the neb treatment by faking coughs, because we always tell her they help her have big coughs and clear her chest. Ray and I both recalled the little two-year-old Abbie who would wander into the kitchen to see a brother taking medicine and immediately cover her mouth and begin fake-coughing in an attempt to get some of the pretty purple stuff too.

We left Abbie to be spoiled by Genevieve and went to the UH football game. It is really fun to watch a group of boys who work hard and care about each other excel. (Please note that they are now ranked #25!) This season is going to be over much too soon for us!

Sunday, 11/19:

Abbie finally made it to Sunday School again! The past two weeks she’s been all dressed and then we either had a vomiting episode or a blow-out diaper that prevented us from going. This is the highlight of her week and she was noticeably excited to as we loaded the van.

Again, I thank God for her switch and for the months and months of work her therapist Lisa put into finding a way for Abbie to communicate. It is like a magnet for the other kids and ensures Abbie’s gets many opportunities to interact.

I did get a little teary when Kathleen told me that at one point Abbie got very frustrated. I asked her what she meant by that and she told me that Abbie had been pulling her head and chest forward, wanting to get up, and then a big tear rolled down her face. This broke my heart while it made my soul rejoice. How I hate to see her suffer, and how glad I am that she is driven to get up.

Sunday afternoon was very special for our church, as we had the dedication for our new sanctuary followed by a luau. I’d initially planned to take Abbie, but Genevieve wanted to come stay with her, and it turned out to be the best thing. She was falling asleep as we left, and probably enjoyed the restful time at home rather than the busy crowd and loud music.

As soon as I saw the program I tried to leave my seat to get tissue because I knew the waterfalls were bound to flow. This dedication was a poignant marker in Abbie’s journey because the capital campaign that paid for the construction was scheduled to kick off the Sunday after Abbie’s accident. During that initial week in the PICU, Pastor McDaniel and other leaders were questioning the timing of that since our church family was emotionally devastated by what had happened and was consumed with supporting us through it. The leaders gathered for a late night meeting at the hospital chapel to pray about it, and afterwards came up to pray for Abbie. That was how Everett ended up laying hands on Abbie so late at night. Anyway, Ray and I supported their decision to proceed because we had learned very powerfully that week how critical the bonds of Christian brotherhood (and sisterhood) can be, and want to see every family have the same support we experienced.

Now, here we were in our beautiful sanctuary that Pastor has called us to think of more as a bridge than anything else. Everett is already Home. Others in that late night group have moved away. On one hand it drove home that life has moved on since that terrible week. I opened the program to find the song “Be Thou My Vision” listed, and tears filled my eyes. It’s the song we sang together that first night, in the conference room next to where Abbie lay on a ventilator with “no hope”. To sing that song again, on a night of such sweet and true celebration, made it for me partially a celebration of how far we have come from the night we sang it through fearful tears.

I don’t think I’ve ever been part of such sweet worship and such pure celebration. It let me imagine what it will be like when Abbie is healed, and then led me to consider what it will be like when that celebration is continual and everlasting.

We honored the first pastor of our church, who served for 31 years. I realized that he and his wife labored all those years, and are now seeing another part of their vision fulfilled. I got to experience for the first time how truly precious the victory is that has been long awaited. The whole night felt like a foreshadowing to me, and I continue to wait with anticipation for what the Lord is going to do!

Monday 11/20

Another great PT/OT session in the sling. We made it to hands and knees very quickly, but the thrilling part today was her head control. As we were getting her in the sling I assumed Lynette was holding up her chest and arms from the other side. Nope, it was all Abbie. She was pushing through straightened arms to support her chest and head. She was looking straight forward, and looked so strong that for some reason she reminded me of a lion.

After we’d been in the sling for a while we got her out and sat her on a bolster to see if she could keep her knees so nicely bent. Easy-schmeasy. We do plan to get her back up on the tilt table on Friday, though, because her ankles are getting a little tight as we still await her stander.

The stander…this is a whole ‘nother issue. One that had me sobbing in absolute rage on Sunday evening. We are still in the process of working this out, hopefully for the betterment of all kids in Hawaii, so I don’t want to post details. Please just pray for us as we proceed. Pray that people in authority would listen and realize this is not just an isolated incident but rather that the system is broken.

There…all up to date! Just a couple of housekeeping things. Pictures…I need to post some so badly, I know. I lost the charger for the digital camera during our trip to Disneyland. I’ll work on this issue so that you can see, literally, how great Abbie looks these days.

Secondly, I don’t know why but I feel the need to write this. Many times I dread writing about things like how much better her drooling is, or how we are suctioning less. I feel like “oh, shouldn’t we be past this by now!?!” But, the real problem is that I don’t trust my words to convey the Abbie I see, so that when I post about things like drooling I fear that will paint a picture of her that is incomplete. I don’t know how to capture her spirit, her spark in writing. I’m not sure how to accurately convey her intelligence, her humor, or her beauty. When I look at her I don’t see “mentally retarded” “developmentally disabled” or “handicapped”. I see “strong”, “funny”, “loving” and “determined”. I pray that when I write about things that fit in the former category, they don’t eclipse the qualities in the second, because that is who she truly is.