Abby STANDING!

Saturday, 7/31,  8:20pm
Here’s another way to know it’s a good therapy session…when the therapist bursts into tears of joy and has to leave the room to get a tissue, you know something big has happened.  Today, Mary Rose, Abbie’s OT, had Abbie on her back and was bringing her hands toward her face.  She said to Abbie, “Blow Mommy kisses!”  And in response Abbie puckered up.  She did this to command twice in a row.  Puckering is not natural for Abbie at this point, and takes a special effort.  Once she did it the second time Mary Rose’s tears started falling to the mat and my mind went back in time to the day before the accident. 
After church the day before the accident we went to Teddy’s Burgers for lunch.  I held Abbie as we stood in line to order.  She is not the most snuggly child, as she is usually far too busy to linger in my arms.  But, that day she gave me kiss after kiss, saying “last time!” and then laying another “movie star” kiss on me – complete with sound effects (mmmmmm-ah) and her head going back and forth.  “Last time!” she kept saying..”Last time!”  Those words haunted me in the ICU the next night as I realized that most likely it was the last time Abbie would ever lavish her kisses on me.  But today I know for sure that I am going to get butterfly kisses again, and hopefully never hear the words “last time”, either from her mouth or in my mind.
Last Sunday I wrote about two words that change everything, “But, God..”  Today we heard two more that we have waited twelve weeks to hear…”Purposeful Movement!”  Praise be to God for this unfolding miracle!!  We have long believed that Abbie has purposeful movement, but to hear Mary Rose say this today left me in shock.  Now we can ALL believe that Abbie hears, understands and responds to the best of her ability.  This truly does change everything.  I have not been able to cry any tears today because I think I am still having trouble absorbing this all.  The hope of our hearts is being brought into reality one day at a time!
Psalm 31 says, “I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul.” As I was reading this today I sensed that for me, and our family, affliction and anguish are becoming past tense words.  The Lord is leading us out of the depths of our sorrows and into something we can’t even imagine yet.

Friday, 7/30  6pm
When you hear a therapist say, “I am floored!  If you would’ve told me on Tuesday that Abbie would be doing this on Friday I wouldn’t have believed it!” – well, you know it’s a good day.  The source of surprise today was Abbie’s knees.  When Abbie was admitted both of her knees were hyperextended, and it took work to even get them unlocked, let alone bent at all. And, the only way she would bend a knee was if you left the other leg totally alone.  Today, she allowed her physical therapist to bend both of her knees to 90 degrees at the same time!!  She did so well at this that they put Abbie in a “bridge” position, where both of her feet were on the ground but her bottom was up in the air.  The speed of this improvement is a miracle, and we are claiming it as such.
It was also a day of heartbreakingly good things.  While her PT was busy with her legs, her OT was blowing on her face (and getting a reaction each time.)  Then, she said “boo!’ and Abbie turned her head to the side and started crying.  Her chin and lower lip were quivering, her forehead crinkled,  and her breathing was obviously a crying pattern.  I had to get in her face and tell her it was OK, and then she calmed down.  She had an emotional reaction..she was scared…praise God!
So many improvements today!  Her tongue is working much better, and even pushed some spit-up out of her mouth, after we held her too tight around her stomach.  This sounds so simple, but for Abbie it is a big deal.  She is moving her fingers independently more and more, especially when we ask her to make the sign for “more” in order to get more yummy tastes.  Her eyes are tracking and scanning better, and just look clearer.  This afternoon her physical therapy took place in the tub, and she helped wash her hair and her body.  She also reacted quickly when her PT squirted some cool shampoo onto her warm belly, which is encouraging.  Also during the bath the therapist noted that Abbie responds to tickling on her feet, which wasn’t apparent on Tuesday.
We do need prayer about some specific things, however.  Today Abbie has a LOT more secretions.  They are thin and white, so it doesn’t look like an infection – more like a runny nose for a kid without a trach.  She couldn’t wear her Passy-Muir valve for long today because it just takes too much effort to breath around the trach with extra secretions in her airway.  She also threw up a significant amount after her morning therapy session.  Please just pray that it will be an isolated incident and she isn’t getting.  We also need prayer about her G-tube surgery.  We would like to have it as soon as possible, but the surgeon is going out of town next week.  We need wisdom to decide who should do the surgery and when it should be done.
I have disciplined myself not to take any books or magazines to the hospital besides my Bible and two devotionals.  Then, even on the days I am too tired to want to read them, I end up doing it anyway.  In the morning with the kids we normally follow a pattern of reading aloud the Psalms that correspond to the day of the month (eg. Today we’d read Psalm 30, 60, 90, 120 and 150).  I’ve tried to reinstitute this on my own in the hospital, and the Lord has blessed me.  The first day I read was Psalm 27, and verses 13 and 14 say “I am still confident of this:  I will see the goodness of the Lord in the land of the living.  Wait for the Lord, be strong and take heart and wait for the Lord.”  It just reassured me that this miracle is going to be done in the land of the living, and I will not have to wait until Heaven to see Abbie restored.  But, it also reminded me that I must wait, and then wait some more.
Tomorrow Abbie will only have one session of therapy, so we are hoping to either bring her home or take her out and about with us.  The kids haven’t really seen Abbie since she was admitted and I’m excited for them to see the improvements in her, and to see her response to them.
I am really trying to allow others to help care for Abbie so that I can give more of myself to the other kids and Ray.  Tonight her steadfast and loving nurse Debbie is with her.  As I was leaving the hospital this afternoon I realized that I trust her with Debbie even more than I trust her alone with me, because Debbie actually is a nurse, while I am still working through the crash course in nursing.  What a blessing to have that confidence as I left her there.  Ray sent me for a massage last night, so my right shoulder is no longer pinned to my ear.  And, a night of sleep at home last night made the world look completely different today.  I have received so many caring cards and notes, I only wish I had time to respond to all of them.  Someday I will – but until then, please know how encouraged and uplifted both Ray and I are by all of you!

Friday, 7/30. 5:45am
As I thought, it’s a little tough to get as many updates out as I’d like..but it’s because I’m so busy with Abbie, watching her progress daily!!  She has changed so much this week it is hard to believe.  She is off one medication (Zantac). She is wearing her Passy-Muir valve all day, even while napping, which is a big deal.  She no longer needs the humidified air at night, so we get to sleep without the noisy air compressor running.  And, we’ve seen numerous physical changes as well.  She is able to place relaxed hands on a ball held in the middle of her tummy and raise it (with assistance) to her mouth.  Each those details is hard work for Abbie, and none of it happens automatically.  She gets better with each practice at a task.  She is responding more and more to her oral therapy as well.  They use oversized Q-tips impregnated with a lemon flavor that are frozen to stimulate her oral motor skills.  She has decided that she really likes the flavor and will request more with her clucking.  We also started working with her on some sign language that she knew as an infant. Yesterday she attempted the sign for “more”.  She also attempted to wave bye-bye.  Her movements are very small, but the intent is there, and that is exciting!  They have been able to get her knees relaxed during therapy, but we still need prayer for her overall muscle tone.  All in all, each day has been one step closer, and I never imagined we’d see so much progress so quickly.
I wish I had more time to write because we are now getting to all the good stuff.  God continues to be faithful in holding me up, particularly through His word.  The timing of the verses I read has made me laugh aloud numerous times over the last several days.  Please pray that Abbie will be able to have her G-tube surgery soon, since she will be so much more comfortable without the tube in her nose – and we’ll be able to see her entire, beautiful face.  Thank you for your unceasing support of our family – even if you’ve never posted, emailed, or called – even if we’ve never met – we truly, physically, spiritually, and emotionally feel it, and we couldn’t be walking this path without it!

Tuesday, 7/27, 7pm
Praise Him, praise Him, praise Him!!  It is only Abbie’s first full day at the Rehab Hospital and we are already seeing exciting things.  I hardly know where to begin.  They did some more assessments yesterday and there were improvements even from her assessments last week.  Here are some of the highlights:  she worked hard at sitting up yesterday and had good head control.  When put in the prone position on her elbows she raised her head a number of times and turned it as well.  She searched out the toy in front of her which was making music and lighting up.  She responds to light, sound, touch and taste.  Her reactions are sometimes very delayed, but the bottom line is, they are THERE!
During this morning’s therapy I thought, “Look how hard she is concentrating..”  Then I realized that I had that impression because her eyebrows were knitted together and her forehead was wrinkled.  This is fairly new for Abbie.  She has not really had any facial expression since the accident, so it was exciting to see her emerge a little bit more.  This afternoon, while bending her knees she had the same look on her face as when she used to be mad at her brothers.  I rejoiced to see a glimpse of my old Abbie girl.  Her artificial nose was getting in the way of her therapy session this morning, so I put on her Passy-Muir (talking) valve, since it is a lot smaller.  She kept it on for six hours, including during a nap – with oxygen sats between 98 and 100 with a marked decrease in secretions.  This gives us great hope as we look forward to capping off her trach to prepare her for getting rid of it all together.  The speech therapists have been using special swabs that have a lemon taste to stimulate Abbie’s mouth.  This morning, with her Passy-Muir on she could really taste them for the first time, but didn’t respond too much.  By this afternoon’s session she knew she wanted the yummy taste and worked her mouth much better.  Now, for the very most exciting and amazing thing…during speech therapy they showed her how to raise her arm and point to me.  Then, they asked her where her mommy was, and without assistance she raised her arm and pointed to me!!!  All of these things I’ve told you, as well as all the ones I don’t have time to write about boil down to one thing…our Abbie is in there and is working incredibly hard to come back to us.  Today our hope has transformed from whispered prayers to a concrete, visible foundation for the rest of Abbie’s journey.  I knew that she would thrive with intense therapy, but I never expected to see changes so soon!
Before today’s sessions I was thinking that I am willing to work the rest of my life to help Abbie overcome those five minutes when I failed her.  I then realized that in her case, my failure had instant, dramatic, severe results, but that at one time or another I had failed my other kids, too.  We all have in subtle or obvious way.  The time he really needed me to listen and I didn’t.  The time I vented my misplaced  anger.  The time I allowed my sarcasm to cut him to the bone. “ Boy,” I thought, “ this is sure a depressing realization.”
Thankfully, then God gave me the rest of the story.  I failed Abbie, and she is paying the price, BUT, there is hope for recovery, for healing – more now than ever.  And, the same goes for all of us.  There is always a chance to heal what has been hurt, and I’ve found through this journey that it is never as daunting as it looks once  you get going.  I’ve also learned even what looks like permanent damage can change and improve given time, patience and dedicated, loving perseverance.  Abbie is teaching me lessons that will help me heal the bruises in all of my other relationships.
I have been fortunate to be in touch with another mom traveling this path.  Her daughter Isabelle (who turned 2 yesterday) drowned in the pool at their Oklahoma home on May 16.  It helps to open my heart to someone who knows my pain and shares my hope.  Isabelle is fighting the same fight as Abbie – would you lift her up as well.  Please pray for the appropriate therapies and for encouraging people to surround Isabelle.
I am spending quite a bit of time at the hospital with Abbie, so the updates may be a little irregular, but I know they will be exciting.  Please pray for our family, especially the other kids, as we adjust to this new situation.  It is difficult to balance all of the needs, and I don’t want anything to slide.  Thank you so much for sharing our enthusiasm and awe at the work of God in Abbie.

Sunday, 7/25  3:30pm
A busy, wonderful day.  We are packing up Abbie’s hair pretties, nightgowns, clothes and toys for the big trip to the Rehab Hospital tomorrow.  The bittersweet feeling is very slight because we are so excited about what this means for Abbie, and what she is going to be able to accomplish.
We took her to church this morning, and again, hearing the music made her day.  She loved it so much that even after the music stopped she was serenading the congregation with her signature, “cluck-cluck-cluck.”  We observed the Lord’s Supper today, and it was an even more powerful remembrance than usual.  Because of Abbie’s wheelchair we have to sit right in the front row, and we were nearly on top of the table with the elements of the Supper – so much so that I almost felt I was in the way.  The Lord said, “Now you can concretely see how near to Me your situation has brought you.”  Before I took the bread and wine (ok, we’re Baptist – it was juice) God said, “I want to you to see how much it cost to give you the hope you have.  Please don’t turn so quickly away from it or let others steal it from you.  It cost me the Son I love immeasurably.  That’s how much I wanted to give you hope.”  The message today also encouraged me to have hope despite obstacles.  Ephesians 2:4 contains two words that change everything…”But, God…”  In this context it was talking about God loving us and saving us despite being unworthy.  To me it also means that He can choose to do whatever He wants in any situation.  Abbie’s MRI looked ugly, she suffered a serious brain injury, the odds are very stacked against her, BUT GOD has the final say and the complete plan.  So, I can wring my hands and wet my hanky with tears.  I can plan, research, do therapy, and pray.  I can listen to experts.  I can ignore experts.  All the evidence can say that Abbie will never recover, BUT GOD is sovereign and that is all that matters in the end.
Later, as Ray and I were talking about Abbie’s move to Rehab, a very clear picture of Lazarus entered my mind.  As I prayed in the ER, thinking she was lost, I cried out to the God who had called Lazarus forth from the tomb.  Today, God led me through the rest the story.  Yes, He raised him.  But, human hands had to unwrap Lazarus from his burial dressings.  Abbie died on May 3rd, and God brought her back to us.  Now it is up to human hands, with God’s direction, to unwrap Abbie, to restore her fully to us.  Please join with our family in praying for all the therapists, physicians, and nurses who are going to be the hands that reveal the healing God has already performed.
Abbie’s team of therapists at RHP are going to have weekly meetings to assess her progress.  She will remain an inpatient as long as she is showing progress and they think continuing her stay will help her.  So, I would like to post specific weekly prayer requests based on their assessments.  Partially so that we can pray effectively, but more so that we can all look back on the items “checked off”, the things already accomplished.  For this week would you pray for:
1.  A smooth adjustment to a new setting.
2.  Decreased tone in her muscles, in her legs in particular
3.  Faster response time to commands
4.  Vocalization with her Passy-Muir valve on.
5.  Stamina to complete her therapies.
6.  A marked improvement in all assessed areas by the first weekly meeting.
I hope that somehow tonight, despite the limitations of electronic communication, I have been able to give you some sense of the hope and anticipation that we have.  Good things are right around the corner!  From Abbie’s new room, which we were in last Tues., I noticed the view of the mountains.  Grateful for a new view, I slid the curtains open further.  Hmmm – two mountains with a valley between them, only this time, I could see all the way through the valley.  I could see the blue sky at the other end!  We are beginning our journey OUT of the valley.  There is much terrain to be covered, and some of it is rough, but the patch of blue at the end beckons and encourages us.  There will be a day when we sit on the beach on the other side of the mountains, with the valley behind us,  and say, “Remember when…”

Friday, 7/23Ê 10:15 pm
So, so, sooo many praises to catch you up on that I am afraid I am going to forget one in this update.Ê LetÕs start with a biggie that at first glance doesnÕt seem to be a source of praise at all.Ê This coming Monday, 7/26,Ê Abbie is going to leave home and be an inpatient again.Ê We are thrilled!!Ê She is going to be admitted to the Rehab Hospital of the Pacific.Ê We were really hoping to be able to do an intensive day program there and still bring her home at night.Ê When we met with RHP staff on Thurs. to discuss options, a day program wasnÕt even presented.Ê I was crushed at the thought of separating our family again, and losing the joy of having Abbie home with us.Ê But, as I listened to the reasoning behind their recommendation for an inpatient stay my heart leaped inside my chest.Ê Their goals are so ambitious that Abbie will really need around the clock monitoring to achieve them.Ê We are talking about getting rid of her trach, getting rid of tube feedings, being able to transfer an object from one hand to another across her midline, being able to correctly identify 2 out ofÊ 3 objects, being able to communicate her wants/needs with her clucking, assistive devices or speechÉand thatÕs not even the complete list.Ê And, these are goals that have been set for the next 4-8 weeks!Ê The therapists would not have written goals like these if they didnÕt believe they could help Abbie achieve them.Ê I was stunned when I opened my heart to really hear what they were saying about the possibilities for Abbie.Ê PRAISE BE TO GOD!!!Ê The staff at RHP is an incredible group of people who have really taken AbbieÕs plight to heart.Ê I can best sum up their attitude with a comment that their Chief Medical Officer made to Ray, ÒWe donÕt know exactly how much we are going to be able to help Abbie, but we are going to die trying.ÓÊ I had difficulty falling asleep last night because of my anticipation. As much as I have shared on this site, there are some things that IÕve kept between God and myself.Ê Like Mary, I have Òtreasured things upÓ in my heart.Ê Way back on May 17th God said some very clear things to me about Abbie, and one was Ò12 weeks.ÓÊ Well, donÕt you know that every day since May 18th I have been bugging God to tell me what He meant.Ê Would Abbie talk, would she eat, would she ÒawakeÓ, what???Ê God never gave me a single clue, He just kept reiterating Ò12 weeks.ÓÊ I sat bolt upright out of a nap yesterday when I realized that Monday, the day we are going to admit Abbie, is exactly 12 weeks after her accident.Ê I could sense Him smile as I finally unwrapped this gift, and the card attached said, ÒNow the real miracle begins.Ó Abbie will be getting 2 sessions of intense therapy each day, including weekend days if she can tolerate it.Ê For those on Oahu who may want to see her, visiting hours at RHP are 4:30-8:30pm to avoid interfering with therapies or much-needed rest.Ê We will be able to take her out on day passes, so weÕre planning to continue taking her to church every Sunday. Ê And, as for Abbie herself, she gave me a thrilling night last night.Ê She woke up around 1am and was just THERE.Ê I asked her to smile five times, and she did.Ê I asked her to squeeze the doggies in her hands and she did.Ê Then, I asked her to lift them, andÉyep, she did.Ê She was yawning and looking right at me.Ê After watching so many iterations of some vision/neurological tests I know the routine, so I did some of them, and she responded.Ê She even turned her head quickly away when she saw the suction catheter coming.Ê Today we had a short appointment at ShrinerÕs, and Crystal and I both noticed her shrugging her shoulders to try to raise her arms onto the armrests of her wheelchair.Ê When I picked up her right arm to help her, the tone was absolutely normal Ð it kind of freaked me out because I am so used to her rigidity now.Ê She is on her way back!!!Ê She was breathing through her mouth today even without her Passy-Muir valve on.Ê She has been able to fall asleep and nap easily today after several days of high heart rates and difficulty settling down.Ê As I suspected at the time, it seems like that may have been yet nother phase she was passing through as she gained a little more awareness.Ê One last thing, from RayÕs perspectiveÉhe was grieving a bit in the middle of the night on Weds., looking at pictures we had just gotten developed from before the accident. He cried out to God saying, ÒI just want her 100% back.ÓÊ Then, he got up to walk back into AbbieÕs room.Ê He glanced at the monitor and saw Ò100/100Ó.Ê I canÕt tell you how rare it is that her sats are at 100 at the same time her heart rate is.Ê Ray got double what he asked for!Ê My devotion for the day said, ÒBe assured that if God waits longer than you wish, it is only to make the blessing doubly precious.ÓÊ Isaiah 30:18 ÒAnd therefore will the Lord wait, that He may be gracious unto youÉblessed are all they that wait for Him.Ó One month from today is AbbieÕs birthday.Ê I had to write that just because I CAN!!

Weds. 7/21Ê 2pm
Thank you so much for all of the caring messages and emails in response to my painful post yesterday.Ê In the same way that I cannot fully describe my feelings, I also cannot adequately describe the comfort you give me, especially during the hard days.ÊJust as windows occasionally need a good scrubbing to let the light shine through, I think my heart needed to be cleansed by the tears I let fall yesterday.ÊAnd, the light certainly is streaming through! Yesterday evening Ray called just before leaving work.Ê He knew how much pain I was in and wanted to pass on good news as soon as he got it. The teams that evaluated Abbie yesterday all met after we left. The Chief Medical Officer called Ray to tell him about that meeting, and the first thing he said is, ÒYouÕve got to know that there wasnÕt a dry eye in the room.Ó You will be hearing much more about these people in the days and weeks to come, but I want to tell you now what incredibly huge hearts they have and how far out of their way they are going for Abbie. He went on to tell Ray that all of the therapists were very positive and are hopeful that Abbie will make great gains with appropriate, aggressive therapy. These words pierced the gloom surrounding me and reminded me again that hope never fails, and that while there is life, there is hope! They are completing a care plan for Abbie, and her daily therapies will begin soon. I called my sister, Tara, yesterday, since I knew that even if I couldnÕt string together one rational sentence she would know what I was trying to say. And, I knew that she could understand me through tears, since she caused so many of them in my childhood (just kidding!)Ê As we talked one thing we agreed on is that it would be so good to talk to others in the same situation. I have corresponded with a couple families who have been through this, but just didnÕt have the energy to compose an email. Then, one of the posts at AbbieÕs site referred me to a site about a woman named Lisa, www.getwelllisa.com.Ê She was in an auto accident in September 2002, and has come so far from the day of the decision to remove life support. Just reading her progress reports, and seeing how long it took her to regain some functions gave me such hope and perspective. God answered a prayer I hadnÕt even spoken. This morning I had a meeting at our local elementary school to begin the long process of getting services for Abbie through the DOE. There were nine people at this meeting, but the one I talked to the most was the physical therapist.Ê She was so encouraging as I told her about AbbieÕs current abilities, including holding herself in her favorite ÒSphinxÓ pose, her head control, and her range of motion.Ê She had such a positive outlook that it was infectious.Ê Everyone at the table wanted to see the ÒbeforeÓ pictures of Abbie that I keep on the cover of her binder, which I appreciated. They want to see her as a girl with a future, not just a past. They want to see what we are working toward, not just looking back on.Ê As the meeting ended and most of the people left, the PT lingered to tell me that she had lost an infant child, and that while she couldnÕt feel my exact pain, she knows the loss of a child. This was another hug from God, another ÒdonÕt be lonelyÓ postcard.
I have to admit that I felt a little guilty about posting my feelings yesterday. I felt like I was letting God down by wobbling in my faith and hope. Then, I remembered others who cried out in desperation. David wrote many of his psalms with tear-filled eyes. Paul certainly cried out for his thorn to be removed.Ê And, even our Saviour, cried out just before His betrayal, for the Father to take His cup, if it be His will.Ê I realized that if I posted only good news, good feelings, and good thoughts that wouldnÕt really be faith, it would be denial.Ê Faith takes into account fear, fatigue, frailty, and painÉand then chooses to persevere beyond them.Ê ItÕs not the avoidance or absence of these things that is evidence of faith, it is the survival of them, the conquering of them that shows faith.Ê True faith is not a beautiful, delicate, ornamental thing.Ê It is a battle-scarred, industrial-strength, bloody badge, misshapen and dented from the battles it has seen.Ê And, it is the only thing we can ultimately rely on.Ê Thank you for sharing this journey with us Ð even the painful parts.Ê I am so humbled that many of you cried with me yesterday, and pray that the light is streaming through the windows of your heart today, too!

Tuesday, 7/20, 3pm
So much of me wants to avoid writing today because I am just in anguish and don’t want to admit that to anyone. Today has been a long and painful day. Abbie was evaluated by team of physical therapists, occupational therapist, speech therapists as well as a neurphysiatrist. Each of the teams had to ask extensive questions about what Abbie was like before the accident. It brought back so many memories. Not big events, but the little details that go almost unnoticed in a day. How she looked with her shirt under her chin trying to snap her “pocket pants, with her big belly in the way. How she loved to play with her building blocks and could name every color. How storytime couldn’t be just one book. We had to wait until Abbie had emptied her entire book box to begin, and then couldn’t stop until we’d read them all. I am utterly consumed with grief today, and I don’t know what to do. Having Abbie here with us now is not stanching my tears, I miss the Abbie we had. I recall all the hopeful and faithful things I’ve written, yet they seem so far from me now. I cry out to God because He seems so distant, yet I know He is right here and sees my heart breaking and cries with me. I do not know what to write, I do not know what to say. I sense somehow that you know my heart, and that is enough. I know that tomorrow will be a brighter day, and I know that all of God’s promises are true. Even when his child is weak.

Monday, 7/19 noon
What a day yesterday was!! Abbie joined us at the 10am worship service and was happy to hear so many familiar voices. I was a little concerned about how she would respond to the volume of the music. After watching her during the songs, I wish we had a worship service every day! She loved it, and was so relaxed whenever the music played. There were times it was a little overwhelming for me to be holding Abbie’s little hand while praying or singing. This was such a dream come true, and I couldn’t believe that we had made it this far. A special treat was seeing her friend Evie, who will be moving away this week. Evie was so gentle and tender, stroking Abbie’s arm, holding her hand, and reading to her. I was blessed just watching the two of them together.

The rest of the day dissolved into an intense migraine for me and restlessness for Abbie. She just couldn’t fall asleep. She was tired in the afternoon, and would doze for minutes at a time, but then awake again. Meanwhile, I couldn’t find my migraine medication until 6pm, way too late for it to be effective. So…at 7pm Ray took me to the ER. As I was lying on the bed in the fetal position the Lord clearly said, “Relax, you are right where you need to be to get help.” The next image to enter my mind was myself on my knees before the throne, and the same words came to me…”right where you need to be to get help.” This lesson stuck with me through the night because I felt like there was more to it that I wasn’t understanding yet. Finally, reflecting on the events yesterday and how the ER trip probably could’ve been avoided if I would have taken my medicine right away, I “got” it. How many times do I nibble around the edges of my problems, thinking that a little more organization, a little more foresight, a little more patience or a little more of something I don’t have will solve it? I don’t take the “medicine” of God’s Word, and his direction soon enough, and eventually I find myself on my knees asking for mercy and forgiveness. And, unfortunately, the pain caused by me not taking my “medicine” in a timely manner is usually borne not by me, but by those around me. Instead of my own migraine headache, I cause migraine heartaches when I wander too long on my own, without turning to God for guidance, correction, and encouragement. Thankfully, He is long-suffering and ever patient with me. He never says, “Oh no! Not YOU again!?! Why don’t you learn your lesson?” He’s ever prepared to give me a “do-over” when I repent and ask. And, that brings more relief than the Demerol did last night!

Please pray for Abbie to be comfortable today. She is restless again, and although she is obviously tired, she can’t fall asleep. I pray for wisdom to know what to do for her. Sometimes it is so hard to care for her because I worry that I am hurting her without knowing it, or missing a sign of discomfort. Praise God with me today for letting her go to His house yesterday, although I have a feeling she’s seen a glimpse of His heavenly house and will hopefully tell us about it one day.

Soaking up some rays at the beach.

Saturday, 7/17, 9:30pm

Abbie went to the beach today!! I can barely type because I keep re-reading that first sentence with disbelief and thanksgiving. Crystal’s joint party with her friend Josh was thrilling for all. The kids were busy trying to keep away from the plentiful Man-o’-War (stinging jellyfish), and we were busy soaking in one more facet of God’s unfolding miracle in Abbie. The minute she felt the sea breezes on her face she reacted with both interest and relaxation. She enjoyed all the familiar voices and turned her head purposefully to find whomever she was looking for. She is pretty good at turning her head side-to-side, but today she turned quickly from her left shoulder and stopped dead center to stare at her beloved Uncle Jack. I took her out of her wheelchair and carried her down onto the beach, very nearly into the surf. She got very excited once she could hear the waves loudly hitting the beach. We stayed for about two hours, and would’ve stayed longer but we had to be home to meet her nurse. I think that going to the beach will now become a weekly activity for the Vara family!

Her nurse had a great idea to help Abbie’s knees. She recommended that we try sitting Abbie on a little stool in the bathtub to give her legs room to bend. That’s all the reason I needed for a trip to PriceBusters for the stool, and the 19 other items I didn’t know I needed until I strolled the aisles! We filled the tub up much farther than we have been, enough so that we could turn on the jets. Finally! A use for the tub features that look cool but never get used! The minute we put her in the warm bubbly water her knees relaxed. I could easily bend them a bit, and she bent them on her own as well! This is a terrific way to do the most painful part of Abbie’s therapy, so bath time may become a thrice daily event.

We are planning to take Abbie to church with us tomorrow. I almost feel that, although we have a long way yet to go, taking her to church will be like planting a victory flag on a summit that is so significant to our family. Worshipping together on Sundays binds our hearts and resets our course for the entire week. Not having Abbie with us has both distracted and depressed us on Sundays. Tomorrow will provide one more huge piece of our “new normal” puzzle. There’s so much more I wish to say, but fatigue is numbing my mind, so I don’t want to ramble. Just know that some of my first thoughts, and some of my last thoughts of each day are overwhelming gratitude for the unending and unimaginable support we are receiving!

Thursday, 7/15,3pm

Alright…I know that, as Ray put it, I’ve been “slacking on the updates” this week. But, I promise, what I have to tell you today will more than make up for it! Abbie was assessed by a neurologist specializing in rehabilitation today. He spoke directly to her in a loud, friendly voice, and she seemed to take right to him. After he had checked her over he sat back down and said the most amazing words I have ever heard. “It looks like, as far as her recovery, the sky is the limit.” The sky is the limit!!! Ray and I held it together until the doctor stepped out of the room briefly. Then , with clasped hands and tears welling up, we just whispered those words to each other in disbelief. He went so far to say that we shouldn’t listen to anyone who doesn’t have this outlook on Abbie’s recovery. The neurologist then spent a great deal of time with us discussing what the best rehabilitative plan will be for Abbie, and we are going to work to implement it. I am beside myself with joy, and also with relief. I knew that to get the best outcome Abbie would need more therapy than I could consistently provide – and now I feel that I will have teammates helping me, and helping Abbie. But, wait…hang on, it gets better. A couple of times during the appointment the doctor mentioned other things that aid recovery, including prayer. Finally, at the end of our visit, Ray asked him specifically about this. He answered, “The longer I have been doing this kind of work, the more I have seen and come to believe in the power of prayer.” My heart was shrieking “Halleluja!!!” as I struggled to maintain my you-can-trust-me-I’m-a-sane-mom exterior. Not only do we have a new team member who is thoroughly positive and committed, but who acknowledges of the power of prayer! This day has been so incredibly beyond our most daring expecations that it still hasn’t all sunk in. So, you see – this update was worth waiting for!
Abbie continues to improve every day. She had her first physical therapy visit yesterday. The therapist was a wonderful woman who spent about an hour assessing Abbie. It was so encouraging to hear someone new say things like, “She’s so attentive.” “She’s so smart” “She’s such a hard worker.” She would roll Abbie from her back almost to her front. After doing this several times she stopped in order to move on to another exercise. Abbie lifted her arm and leg in an attempt to do it herself. There was a very special bonus about the therapy yesterday. Abbie’s pediatrician was in the neighborhood, so she stopped by and observed the entire session, along with her very patient daughter. What a blessing we have in this physician, although I feel almost silly saying it that way. During the therapy Dr. L. seemed almost more like a proud auntie than a doctor – she really is part of the family now!
Bath time remains the miracle session every day. During her last two baths Abbie not only moved her wrist and hand, but actually bent her elbow on her own to draw her hand up towards herself. Amazing to watch! She has been sleeping reliably at night, from around 10pm until nearly 6am. We have to bother her at 2am to reposition her and take her splints off, but she doesn’t usually stay away for long.
For those of you who have been praying for Baby Isabella, just a quick note – her mommy got to hold her with no breathing apparatus attached! This cannot be described as anything but a miracle. She is making more progress than they thought she could (sound familiar?) So, please, keep lifting her up along with her little friend Abbie.
When we were discussing the power of prayer with the neurologist this morning we were privileged to tell him about Abbie’s site, and all of you who hold her up continuously. We told him that she is only here with us now because of your prayers. We will never be able to thank you enough!

Laying down by my self.

Saturday, 7/17, 2:20am
TGIF has never had such meaning before!  This has been a week full of great developments, but it has also been exhausting.  I am looking forward to two days of having Daddy here, and two days without appointments.

We visited Abbie’s pediatrician in her office today—what a victory!  Doing things that we thought we’d never again do with Abbie, even the mundane things like doctor’s visits, reinforce just how blessed we are by each day we have her.  We decided that we will bump up Abbie’s Baclofen (muscle relaxant) just a little bit. The last increase brought great relief to Abbie because it allowed her to unlock and relax her arms.  We are hoping to get to that point with her legs.

Ray and I then went to have lunch in his cafeteria.  It was like a homecoming for Abbie, with so many people greeting her warmly and lovingly, cheering her victory and proclaiming her miracle.  Of  course, God didn’t stop with just giving us general warm fuzzies.  As we were eating a woman we didn’t know approached us and asked if we would mind if she prayed for Abbie.  You can imagine our answer.  She said she’d been sitting across the room watching Abbie and just saw such a wonderful, bright glow around her.  She assured us that Abbie was going to get better.  Immediately after this encounter, a woman who works at the hospital walked over and tearfully touched Abbie’s head.  She gave Abbie a wonderful stuffed Care-Bear, which is the new “Glow-A-Lot” bear.  The word “coincidence” no longer exists in our vocabulary.

The three of us spent the afternoon at Shriner’s Hospital for Children, yet another place I thought I’d never be.  We are going through Shriner’s to get a wheelchair built for Abbie to replace the loaner from Kapiolani.  She had a spinal X-ray while we were there.  Kids who are immobile for extended periods of time have a much higher incidence of scoliosis.  Since Abbie was a perfectly healthy, rambunctious child up until two months ago we weren’t expecting to see anything abnormal, and her X-ray was fine.

We rushed home in order to meet the Physical Therapist at four.  With just a few minutes until her arrival I opened mail that had arrived.  I received a card from a woman, Barbara, whom I know only through her daughter and have never met in person.  It is probably the fourth or fifth card of encouragement she’s sent me.  They mean so much because her words are always so heartfelt and uplifting, but also because Barbara has walked this valley with a different destination.  She knows the pain of losing a child because her youngest son was killed in Afghanistan in 2002.  The outside of today’s card read,”Now unto Him who is able to do exceedingly abundantly above all that we ask or think…to Him be the glory.” (Ephesians 3:20,21)  I smiled because “exceedingly abundantly” was such a theme of the day yesterday with our rehab meeting. Then I opened the card to read “God is working in more ways than you have asked Him.  He is doing more things for you than your faith can imagine!”  I had to catch my breath before I could even begin to read Barbara’s note.  My struggle is never with the big picture of  God’s ability, goodness or faithfulness.  My struggle is in the minute-by-minute progression, believing in His provision and plan when my eyes don’t see obvious signs of improvement, or when I am grieving what Abbie has lost and is currently fighting through.  But, that’s what “exceedingly abundantly” means – not only is He always at work, always with our good in mind, but He purposes to do more than I can think to pray for.  The card just reminded me that I cannot even imagine all that He is doing in and through Abbie, and that I don’t have to worry about not “praying correctly”, because His plan so far outstrips my ability to ask.

Ray and I have a closely-guarded tradition of Friday being our date night.  This evening was our first one since Abbie’s accident.  When he asked me what I wanted to do, the first thing that came to mind is to do the most “normal” things possible.  So, I asked him to make reservations at our usual Friday night place, Assagio’s in Hawaii Kai.  We love their food, as well as the marina and mountain views.  But, just as much, we love the owner, Maile, and I was anxious to see her again,  This would be another  piece of normalcy to fit into the new jigsaw puzzle of our life.  We walked in and got a long hug from Maile, and then saw at least five families we knew.  It must’ve taken us fifteen minutes to actually get to our table.  We sat down and Ray said, “You know, we prayed about what to do tonight, and I feel that, through so many of our friends being here, God just hung out a banner that says ‘Welcome Back!!’”

Oh yea…Abbie… I guess I should stop talking about my self, self, self and tell you about her!!  Her PT wanted to see her in the tub, so we actually did most of her therapy in the tub today.  I like any excuse to get her into warm water and see her relaxed.  The therapist worked with her for an hour, and after she left I did some more work with Abbie.  Her stamina is pretty amazing, and will really aid in her recovery.  As you can see in the picture, Abbie can hold herself while laying on her stomach and propped up on her elbows.  She held that position for over five minutes today.  She can put her head down and then bring it back up when we ask her to.  Today she also looked to her sides while remaining steady in her pose.  She just looked so beautiful with her freshly-washed hair hanging loosely around her shoulders.  I wish this picture could’ve captured her glow.  We have also increased the volume per hour in her feeding so during therapy we can stop the feeding.  Please pray that she will be able to handle this change.  The biggest challenge will be suctioning.  Please pray that she will not vomit in response to this highly-irritating procedure.   Please also continue to pray for her muscle tone, particularly in her legs.  Her little knees have become hyperextended, and she looks so uncomfortable at times.  The therapist could feel her trying so hard to obey the command to bend her knees, she just can’t right now. 

I hope that you have a great weekend!  We are planning to take Abbie to the beach for  the first time since her accident.  Crystal is having a birthday party tomorrow, thanks to the efforts of friends.  It will be in Waimanalo, which, for those of you unfamiliar with Hawaii, is one place where God the Artist really outdid Himself. I am hoping that it goes smoothly, and particularly that it is not too hot for Abbie.  I will post a picture of her with the surf in the background…praise God!

One of Abbie's new toys.

Monday 7/12  10pm
The birthday bonanza at our house – Crystal’s 17th birthday, my nephew Connor’s 2nd birthday, and my Dad’s XXth birthday.  It started out calmly, even as I realized with more than  a little apprehension that this was my first day on my own in our new reality.  Ray went back to work this morning, leaving me alone with all six kids.  We had a nice quiet morning, wheeling Abbie over to the fish tank to listen to the gurgling water and to look at the fish.  We then took her to the piano to listen to my raggedy version of “Fur Elise” and RJ and Matthew’s songs from their lessons.  She signaled her approval with her special clucking sound.  That sound was Abbie’s signature when she was younger.  She couldn’t say the “k” sound at the end of words, so for milk she would say “mil-cluck” or for drink she would say “drin-cluck.”  It is so sweet to hear her do something so familiar and so uniquely her.
Then, the phone started ringing, and didn’t stop for the next six hours.  It seems that every agency we’re working with needed to talk with me today.  We are working on replacing some of the medical equipment that isn’t working properly.  The in-home therapies that we thought we had set up, aren’t lined up.  This is a big area in need of prayer.  Continued, aggressive therapy is key to Abbie’s recovery, and it looks like we may be back to doing it all on an outpatient basis, which would be nine weekly appointments in addition to doctor’s visits.  There are some new options which appeared for the first time today – so please just pray that the right doors would open and that we would have the discernment to see which avenues to pursue.
After the nurse arrived to care for Abbie, I ran an errand to take care of an administrative detail about Abbie.  I was unable to complete the process, for the fifth time.  I was so frustrated that the tears started flowing on the way home.  I rarely cry these days, partially because I don’t have the energy or time, and partially because I am afraid that if I start I may not stop.  The tears were not just about this relatively minor, if irritating, task – that was simply the pin that pricked the balloon, releasing the torrent inside.  I finally cried about everything, to the point of being overwhelmed.  Fortunately, I had decided to take the scenic drive home.  And, I do mean truly scenic – just as I was losing my vision because of the blur of tears I had Kapiolani Park and Diamond Head to my left and Queen’s Beach to my right, and the first notes of “You Raise Me Up” by Selah came on the radio.  This song makes me think of you all—the chorus goes, “You raise me up, so I can stand on mountains.  You raise me up, to walk on stormy seas.  I am strong when I am on your shoulders.  You raise me up to more than I can be.”  I was completely broken, sobbing, and lost in despair but those words allowed me to remember your prayers and to be carried home by them.  You can never know how keenly I feel your support and how powerfully you lift me up.
I arrived home to find a piece of mail from an unfamiliar address, Champion Forest Baptist Church, in Houston.  The outside said “Prayer Note.  You were remembered in prayer today!”  The message inside read, “Dearest family, We are praying for an awesome recovery and miraculous healing in Jesus’ Name. May the Lord give you renewed strength, hope and courage to care for Abbie each day.  Thank God for His awesome blessings.  Sincerely in Christ, Ron M.”  See what I mean about being lifted up and carried on shoulders??  God’s timing and His people’s faithfulness continue to astound me daily.
In the picture of Abbie and RJ you will see a little purple valve on the end of Abbie’s trach.  That is her Passy-Muir valve, which allows her to exhale through her mouth and nose.  Despite what I just wrote about not crying often, receiving this device made the tears flow as well.  I was already so thankful for this little thing that may give my daughter her voice back, but then I started reading the instruction manual and really lost it.  On the cover is a picture of a man in a wheelchair.  I thought, “How nice, they have a real user being a model for the manual.”  Then, I read the paragraph below the picture.  It is a little lengthy, but I want you to have a chance to read it as well.  It was written by David Muir, the inventor of the valve, who was the man in the picture.  He wrote, “I was diagnosed with Muscular Dystrophy at age five.  Over the years I gradually weakened and became a quadriplegic.  I was twenty-three and studying biochemical engineering in college when I had a respiratory arrest and became ventilator dependent.  I had accepted that I could not walk, and I had accepted the other difficulties of my disease.  However, when I realized that I could not talk, I wanted to give up.  Then I realized I was not ready yet.  I said to myself, ‘Wait a minute.  You’ve never given up this easily before and you’re not going to this time.  There has to be a way around this problem.’  These thoughts became my theme for three agonizing months while I was working on my design for the speaking valve.  As corny as it sounds, every rain cloud has a silver lining, this is absolutely true.  Ask me, I know first hand.”  I sat on the hospital chair and sobbed as I read the thoughts of a kindred spirit – a miner of silver linings.  I was so thankful for his stubborn spirit and his creative mind.  My heart overflowed with gratitude for his perseverance that may allow me to hear Abbie’s voice again.  David Muir wrote those words in January of 1990.  He passed away in August of the same year.

Sunday 7/11
Our first Sabbath with Abbie home.  We scheduled a nurse to arrive at 7:30am so that we could be at church by 8:15.  That was the plan at least.  The nurse arrived right on time, but after a fairly sleepless night we just couldn’t get the train moving fast enough to make it to Sunday school.  We did make it to the 10am worship, at 10:05.  It was great for Ray and I to be at church together, but terribly difficult to leave Abbie  behind.  The tears began to flow as we stood and sang, “Holy, holy, holy, Lord God Almighty.  Early in the morning our song shall rise to Thee.”  He has always met us in the morning with a fresh dose of encouragement and a renewal of hope.
Abbie slept quite a bit during the day, to compensate for keeping her Daddy company in the middle of the night. But, that doesn’t mean it was a day without a miracle.  We just had to wait until bath time at 8pm.  As Abbie’s body relaxed into my arms in the hot water she became much more responsive to commands.  When we asked her to move her hand, she actually turned it, lifted it out of the water and moved her fingers!  Later, as I was doing our after-bath therapy I put Abbie on her stomach and propped her on her bent elbows.  Just bending her elbows is a big accomplishment for Abbie, but she went a mile further…she held herself in that position very solidly on her own.  I let go of her, sat back and smiled.  We are seeing such improvements in her muscle tone.  We don’t know if it is due only to the increase of her muscle relaxant dose, but we like to think that being home plays a part as well.  Please pray specifically for two physical concerns – a decrease in her muscle tone and improvements in her vision.  We can see the Healer at work daily, and we know how he loves to anwers the prayers of His people!

Abbie and RJ just hanging out.

Saturday, 7/10 9:25pm
Well, we didn’t make it to the Assistive Technology fair, but we did get out of the house with Abbie today, which was a huge accomplishment for us. For those of you with kids – do you remember the first time you tried to go somewhere with your first baby, and how long of a preparation process it was? Well, we were like brand-new parents again today, fumbling our way out the door, remembering “one last thing” about ten times. We ran an errand and then we went to one of our favorite restaurants, Antonio’s in Kahala, for pizza and wings. We all went in and sat at our usual table, and got another piece of our life back. Abbie fell asleep while there, and slept for almost the entire meal. She could’ve been just another little girl in a fancy stroller for all most people knew. But, then another patron came in , someone who works with Ray. She came over to see Abbie and to tell us she has been praying for her. In that moment I remembered that Abbie is no longer just another little girl, and that there are many blessings in the trial. And again, now that I am out of the hospital cocoon, God is showing me concretely every day how many people truly are lifting Abbie up, which lightens my burden more than I can describe.
In some ways I have been a little ambivalent about having nursing care in our home every day. It is a great help, and affords me some respite, but I enjoy taking care of Abbie on my own. Then, we had an angel of a nurse come today and totally change my outlook. She did therapy with Abbie, sat her up and read to her, let Abbie wear her stethoscope and sang “The Wheels on the Bus” through it…she really cared for Abbie as a little girl and not a patient. I have to give up the pride involved with wanting to care for Abbie completely independently and admit that it is best for her if others, such as this wonderful nurse, help her on the road to recovery. This is a difficult conclusion for a mom to come to, but not many things in this journey have been easy.
Her eyes are wide and bright now and it makes her look so much more like herself. Actually, she now looks like a much longer and chunkier version of herself. At this rate, she’ll be as tall as me by the time she’s seven. For the first time today I mentally changed the way I am going to describe Abbie to the various agencies and people we will be working with. I am so tired of calling her a “near-drowning victim.” So, from now on she will be a “near-drowning survivor.” Such a small linguistic difference, such a huge mental change. We have been getting her dressed every day for about three weeks now, and stopped calling her “sick” at about the same time we started getting her out of the PJs . We now say that she is “healing.” I think that our attitude can affect everyone who is involved with her care, and by choosing these words we are implicitly setting the goal at full recovery. I used to brag that Abbie had no problem surviving four older brothers. I think now that her surviving them prepared her to overcome this, with all of them cheering her every step.

Home sweet home.

Friday, 7/7, 11pm
Our first full day as a reunited family is coming to a peaceful close. Abbie is doing a good job at settling down around 10pm and sleeping pretty much through the night. Both Ray and I experienced a physical letdown today. I slept a good part of the morning after loading up on Sudafed and my migraine medicine. He had to go to bed early tonight because he was feeling poorly. I think that we have been resisting this crash for weeks, and now that we are home we finally had the chance to just fall into bed when we needed to.
Abbie had dinner with us tonight. We are committed to including her in as much of the family activity as possible. So, we wheeled her up to the table and talked to her during the meal as we would any of our children. We don’t yet have a bath chair like the one in the hospital, so I have been acting like one for Abbie. I get in the tub and hold her, which is probably nicer for her, and much more enjoyable for me as well! I think she really likes the floating sensation and the relaxation the warm water brings. She continues to respond well to our therapy routines, and I was able to bend her knees tonight, which I couldn’t do last night. There happens to be an assistive technology (AT) fair in town this weekend. AT are the devices that will help Abbie communicate until she can verbalize easily. We are planning to take Abbie and go to it in the morning. This will be our first trip out and about. Would you please just pray that it goes smoothly?
God gave me a great illustration of our experience today, but I must first give you a couple of disclaimers. First, cockroaches are a fact of life in Hawaii. Our exterminator does a great job, and really limits their appearances in our house, but the occasional hardy one does visit us. Also, cockroaches in your home don’t necessarily constitute a judgment about the cleanliness of your home (Ray would really want you to know this!) So…I was sinking into my first hot bath in two months today, ready to relax and recover. I looked up to see a large cockroach right above me. My first instinct was to jump out of the bath and do a little “I’m so grossed out” jig on the bath mat. But, being too lazy to move that fast gave me enough time to remember that our bathtub is entirely enclosed, so actually I was protected by the plexiglass ceiling, and was looking at the underside of the roach as he crawled around. As he meandered above me I thought about how much it symbolized our journey with Abbie. Her accident was a shock, just like looking up to find that roach, only magnified a million times. Through the entire ordeal Ray and I had the sensation of seeing the tragedy and sensing the grief and fear, but not really experiencing it. We were on the other side of the Protector—He stood between us and the yawning chasm of the reality that could’ve engulfed and destroyed us. I wish God would’ve used a different messenger for that lesson, but the roach and I made peace, and I enjoyed a lovely bath (without looking up.)
I read through yesterday’s update because I write late at night and off the top of my head – often I don’t really remember what I wrote. I have to ask for your forbearance for the typos and misplaced words – please don’t worry for my children’s educational future..I really do know how to spell and use proper grammar!! Part of me wants to go back and edit much of what I’ve written, but I’m going to leave it alone so that I can remember just how tired and challenged I was, and so my honesty doesn’t get replaced with “what I wish I’d said” hindsight.
Thank you so much for sharing our joy in Abbie’s homecoming. We are saving every message for her. Someday she will know how many people prayed for her. And, someday she’ll be able to tell us the songs she sang while sitting on Jesus’ lap.