Saturday, 3/4/06
We’re still on dry land, but this week we found out that while kids in Hawaii will never get a snow day off of school, they can get rain days. There were some areas on Oahu that got 18 inches of rain in a 24-hour period, which as you can imagine made some roads impassable. We don’t live on the wetter side of the island, so although we spent the week feeling like we were living in a balmy version of Seattle, we actually got off easy.
We loved having my sister Tara here with her sons Cooper and Oscar. I would program Abbie’s switch each morning so she could greet Cooper and then sing songs and count with him. I think the favorite for both of them, though was playing Hide and Seek. I would program in the counting, then “Where are you?? I ‘m going to find you” and then “There you are!” But, we do have to help Cooper learn the finer points of the game. As soon as we were done counting we would hear, “I’m right here, Tuff-ney!” On the way to the airport Cooper said, “I want Abbie to come visit me at my house. Will you make sure she brings her switch, because that makes me happy.” It made me cry then, and is wetting my cheeks as I type.
Abbie got up in the Walkable on Friday at physical therapy. She is doing an amazing job at lifting and holding her trunk while she’s standing. She is not used to bearing a lot of weight on her feet yet, so would you pray that she will gain strength and flexibility as she practices? We then kept her in the harness and hydraulically lowered it so that she could sit on a chair. She again did a super job at holding her head and trunk without pushing through her legs, which means she’s holding herself up using her strength rather than her tone. We are really looking forward to her own Walkable arriving at the house in two weeks. We have been telling her that soon she’ll be able to walk all over the house again, and perhaps even sit down at the piano and play a song for us. She clucks her tongue so hard at that I worry she may pull a muscle!
Today we went to a workshop at Easter Seals for kids using communication devices. This session was in preparation for our group outing next Saturday to a therapeutic horse-riding stable. One dad in the group made a professional-quality video of the program, and seeing what they can do with kids of all abilities made me cry (I know, a lot of tears lately). I am so very excited to get Abbie up on a horse! We worked hard to day to make sure we can work in a lot of language opportunities during the experience. I’m sure she’ll have lots to say about the barnyard smell! And, yes, I’ll make sure we takes lots of pictures.
We are pretty much without nursing for the next 2 weeks, so please pray for our stamina, endurance and juggling skills. During periods like this it is hard to give Abbie the time, attention and stimulation she deserves, so we’re just praying that life in general will be calm.
We had a good question at our small group on Wednesday evening…”How can you tell if something you are going through is a test from God or you falling into temptation?” I think we like to group the bulk of our challenges in category number one, which makes them not our fault or responsibility. Unfortunately, as I reflected on it, I think a majority of what we struggle with is actually in category number two. The best example I could give relating to Abbie’s journey is that yes, I do believe it is a test in the broad scheme of things. However, daily I can fall in to temptation, such as the temptation to despair, the temptation to covet, the temptation walk in my own strength…these things take a simple test from God and turn it into a convoluted trial for my heart. Simple doesn’t mean easy, but it does mean straightforward. In most of God’s tests I think His two main questions are, “Do you love Me?” and “Do you trust Me?” If we can simply answer those with a “Yes”, much of the temptation is avoided. Again, simple doesn’t mean easy, but I think God really treasures the hard, heartbroken “Yes” more than anything.
Friday, 2/24/06
Aloha and Happy Friday! Thank you for all the kind notes I’ve received regarding the new “Abbie’s Healing” section of the site. I’ve realized, though, that I can’t coast on that effort too much longer – it really is time to write an update! There’s so much to share that it may seem I am all over the map, but bear with me…it’s all good!
The first thing I must tell you about is just how much we’ve been encouraged lately by people we’ve not yet met who have taken the time to send us amazing emails. In one week alone we got notes from Ted, Carol E., Cristalie and Heather. Imagine feeling low one morning, and opening your email to find salve for the most tender parts of your heart. This has been happening to me over and over lately, and I hardly feel worthy.
Another example of how God is surrounding us with love is a little girl named Noelle. She is the sister of RJ and Matt’s baseball teammate, Micah. This year’s baseball season (which begins in January in Hawaii), has been one of transition for us. The twins played on the same team for the past two years, so all the families knew Abbie “before” – they knew the huge spirit in the little body who came to games in a wheelchair. But, this year we are on a new team, and no one knows Abbie as anything except the “little girl in the wheelchair.” I hate to admit how hard this has been for me.
Last Saturday the twins had a game while Debbie was getting off, so she walked Abbie down to the park. Abbie had been sitting by me for about 15 minutes when Noelle and her mom, Sue, walked over and started talking to her. I was thrilled that they were talking directly to Abbie and not to me. 9-year-old Noelle then spent the next hour with Abbie, talking to her about their mutual loves of pink, stuffed animals and dancing. Abbie basked in the attention and the joy of making a new friend. I have never met a girl like Noelle, and think perhaps she is an angel who’s come to keep Abbie company along the way.
Sue called a couple days later, and I was thankful for the chance to tell her what an impact Noelle had on both Abbie and I. Before I could get the words out, Sue was thanking me and Abbie for turning Noelle’s day around. She’d been bored and unhappy, stuck at her brother’s baseball game, but then according to Noelle, “Abbie came and I had a great day. She likes pink, I like pink. She likes stuffed animals, I liked stuffed animals. We just really clicked!!” I cried all over again as I realized that Noelle truly saw Abbie, not just a little girl in a wheelchair. What abounding grace the Father pours on us!
Abbie continues to do well in therapy. At her last PT session we put her in the Walkable and began strolling down the hall. We found that she does much better if we count steps. It makes sense, I guess..I know I do much better if I know how many repetitions of something difficult I must do. We cruised to the end of the hall and then took a break to let her practice standing. She did great!! She held herself upright while I read her a book, and then she walked back to the room faster than ever before.
We also learned (again) that sometimes frustrations are doorways to wonderful things. Recently, Abbie’s “Buddy Button” switch broke. She would be squeezing it, and we would hear it click, but it wouldn’t activate her voice output device. Maddening for her, to say the least. Out of desperation, I put her voice output device near her hand. It also has a button on the top of it, but the device is rather large and Abbie’s never been able to navigate her hand up and down to use the device independently. Within two minutes of placing it near her hand, she began using it. She figured out, by herself, that she needed to lift her hand to release the switch so that she could use it again. I was so excited to hear her “voice” again (which is actually my voice, and that’s especially unfortunate when Abbie wants to sing songs!). But what thrilled me in the broader scheme of things is that I didn’t really show Abbie how to work the switch this way -- she figured it out through trial and error. She is beginning to learn on her own!!
At OT this week we sat her wheelchair straight up, which forces her to hold her own trunk and head. We normally keep it reclined just a bit to give her some help with this, but were interested to see how long she could handle being upright. The answer is: one hour!! She had head control during the entire session, which is astounding! She was working on scooping marbles with spoons and tracking them as she moved them from one spoon to another (with our help). It seems that her best field of vision right now is the interior lower quadrant of each eye. We are so excited that she has some vision, but would you please continue praying that her vision would be completely restored?
My sister Tara is visiting this week, along with her sons, 3-year-old Cooper and 8- month-old Oscar. Abbie is enthralled with Cooper, and I have to program her device each morning so she can “talk” to him. Cooper enjoys helping me feed Abbie through her “special straw”. It amazes me at how much better her muscle tone is when she is mentally stimulated, especially by other kids.
I’m tired enough right now that I run the risk of rambling if I continue writing. We thank the Lord continually for the mercies, grace and kindness He shows to us through you. May He bless you abundantly!
Monday, 2/13/06
I have been spending all my writing time preparing the pages for a new section on Abbie’s site called “Abbie’s Healing.” This addition has been on my mind for months, but recently I found myself emailing the same information over and over again to parents of brain-injured or ill children. I was chipping away at this task when I got an email from a woman named Diana Palumbo, mother of beautiful Samantha whose brain was injured in a car accident in April ’05 (www.pray4samantha.com). It was a group email telling friends and family they were taking Samantha to Dallas to Dr. Tennant’s clinic. An email I sent her prompted her to contact the clinic, and after several lengthy conversations they decided to go receive Biomodulator training and have Samantha evaluated. I was so overjoyed that I was laughing aloud and practically hyperventilating. The commotion drew Crystal out of her room to see if I was OK. Seeing the difference one email can make, I committed to getting off my hiney and finally getting the new pages done.
All that to say, “I’m sorry” for the lapse in updates! There has been some great stuff happening. At PT a couple weeks ago we strapped Abbie into the Walkable, and then stepped back for a moment to plan how we were going to maneuver out of the room. Debbie, Lynette and I looked over to see Abbie standing perfectly erect all by herself. She had picked up her shoulders and head and place them perfectly. She looked like she was thinking, “Ho, hum…I do this all day long.” An astounding sight for me!
We are now timing her head control in minutes instead of seconds. We have gone through phases like this before, but there is a major difference this time. She is lifting and controlling her trunk and head using only the required muscles – she is not pushing through her legs or arms, and is not using her tone. The other day at OT we were so focused on working with her hands that we didn’t even think to time her head control until after it had been at least five minutes.
Of course, Abbie can’t use her gains for only good things, she likes to be feisty as well. She loves to lift her head and move it completely around her wheelchair’s headrest. All fun and games until she tries to pick it up again and is pinned by the wing of the headrest – more than a few fits have been generated this way.
Emotionally, the place we are in is changing as well. I saw an example of this last night when Ray was changing her diaper. She locked her legs and wouldn’t let him change her. Normally this would be looked at as a “brain-injured thing” – where she is incapable of relaxing because of high muscle tone. But, then Ray said, “Hey you! Open up these legs for me…” She grinned from ear to ear and the game was on. Back and forth they went until she loosened her legs for him. We have a lot of playing around and joking these days.
We also have a lot of normal little girl things. After church yesterday we went to lunch at the Cheesecake Factory, which is a marathon exercise. By the time we got to the table, Abbie was hungry and tired. I held her as she fussed, and while I was sympathetic I just looked at her and firmly said, “Abbie, we are in a restaurant, this is no place for a fit. Your food is coming, just quiet down.” End of fit.
We wish you a very happy Valentine’s Day – even if you feel alone, remember that there is One who loved you enough to die for you.
Thursday, 1/26/06
Life has been going at warp speed lately: three sets of wonderful guests, two weeks of the stomach flu, one trip to the ER for stitches, and a mynah bird in one papaya tree…(just kidding about that last part)
The flu did move slowly through our house and I think Abbie caught it every time it came around. She spent two weeks subsisting on chicken stock, ginger tea and Pedialyte. This really sapped her strength and maxed her time in the rocking chair. Because she’s been ill I haven’t yet scheduled her Botox procedure…well, that and the fact that I am procrastinating while we employ other methods.
Dr. Tennant was in town last weekend to give another seminar, which brought many, varied blessings. One of the biggest was that Luke’s mom and dad, Gordy and Sue Searles traveled from Tacoma for the event. I cannot describe the comfort and ease of talking with people who are in exactly the same boat we are. They are precious people, and we so enjoyed getting to spend time with them. Also attending the lectures was Abbie’s pediatrician, Dr. L. I don’t know of any family more fortunate than we are in the matter of having a doctor who is a teammate. I was anxious to get her impression of Dr. Tennant and his material. She and Ray felt the same way about him: a very solid guy with impressive credentials and nothing to gain by touting this device or these methods. He truly is only out to educate and help people. I felt this way all along, but I was glad to receive validation from two people whose opinions I respect.
Dr. L. and Dr. Tennant both mentioned that Abbie would probably benefit from some extra magnesium, so I added that to her diet two days ago. I was also able to transition her back to a regular diet at the same time, with the addition of two scrambled eggs per day. At the seminar I learned that with patches attached to the Biomodulator device and place on Abbie’s belly button and sacrum I can give her treatments for hours at a time, instead of just 12-30 minutes as we had been doing. So, I don’t know whether it’s the magnesium, the improved diet, her recovery from the flu, the additional treatments or a combination of these things (most likely), but the last two days have brought amazing changes for Miss Abbie.
As soon as she got better I noticed her holding her head up for long periods of time, and catching it very quickly if it dropped. And, although this is hard to quantify, yesterday I noticed that she was looking different in her wheelchair. Actually, she now looks like a princess being pushed on a throne because she is not depending on the chair to hold her head or trunk up. I thought it might’ve been in my head, but the first thing her physical therapist said today was, “Wow! She is looking a lot different in her chair!” And thus began one great session!
Lynette put her on a ball to bounce and warm up before we used the Walkable. She was amazed at how Abbie was holding her trunk and head herself, but then she asked me to bend her knees at the same time. I was able to bend her knees as if she were sitting in a chair, and she kept her head up as if it were the most natural thing in the world for her to do that. Even I didn’t recognize what a big step this was until Lynette looked at me with joy and said, “This is HUGE! This is really huge!!!” Because Abbie’ s knees were bent it means that instead of using her high muscle tone to hold herself up she was using her own strength and coordination. Huge indeed.
I was excited to see how she would do with walking, but it didn’t go as smoothly as it had in the past. I swallowed a bit of disappointment and washed it down by remembering that she hasn’t been bearing any weight at all for almost three weeks. I needn’t have done that. Once we analyzed the reason she was having a harder time, it was actually yet another cause for celebration. In the past Abbie’s main job while walking has been to relax her legs to allow us to bend them and move them for her. Today she decided she was done with all that, and wanted to do the whole thing herself. Once we realized that, we started prompting her on her hamstrings, and telling her to use them to bend her knees. Sometimes as we were pressing on one, she would fire the other one…so, she knows what to do it’s just a matter of practicing to get it right. She was also doing much better at holding her head up while walking, which is a big feat for her.
As we were explaining to Lynette the magnesium addition, extra treatments and improved diet she was assessing Abbie’s muscle tone and range in her legs. She looked up and said, “You know, it really looks like you could hold off on the Botox for now.” Praise God!! Thank you Lord for blessing procrastinating moms! This thought has been in my mind as well, but her opinion was quite a confirmation. As we were packing up to head home, Lynette had a bit of a quizzical look on her face and finally said “I’ll see you guys next week…I don’t even really know what to expect at this rate…”
Just to add definition to my first paragraph: in addition to the Searles, we also had my Uncle Tim and Aunt Lois stop by for a couple days on the way to Maui – what a treat for all of us. And, we got to see the Muellers, friends from our Alaska days. The trip to the ER happened Monday – just as the repairman was arriving to fix the stove and Abbie was crying I heard RJ’s head go “clunk!!” on the coffee table. When I saw blood spurting through his hair I knew we were headed for another punch in his ER Frequent Flier card. Just about the time I was beginning to melt down, Gordy and Sue returned from sight-seeing. They just walked in and said, “We’ve got Abbie, you go take care of RJ.” If anyone else in the world would’ve said that to me I would’ve hesitated, but noone else knows my life like they do…what a blessing!
All I can think is “This is really getting good now!!” Each day is exciting, not only to see what Abbie does, but just to enjoy having her. Our small group is reading through the Bible together, and I have been noticing things in Genesis that have never stood out before. Leah, the unloved bride of Jacob, bore him three sons and named them Reuben, Simeon and Levi because, “The LORD has seen my affliction; surely now my husband will love me”, “Because the LORD has heard that I am unloved, He has therefore given me this son also”, “Now this time my husband will become attached to me, because I have borne him three sons.” Jacob’s feelings toward her didn’t change, but then she had Judah, named because she said, “This time I will praise the LORD.” From her decision to stop declaring what the Lord was doing, or why He was doing it came the line of Christ, Judah. I am trying to learn from Leah. I have a bad habit of thinking, “Now that she’s holding her head up so well, she’ll be all better soon,” or “Because so many have so faithfully prayed, her healing is coming soon.” The truth is I don’t know the whens, whys, and for whoms of the Lord, but I can choose to praise Him in His Sovereign goodness anyway. That praise is the foundation for joy, and as my dear friend Sue reminded me this week “His joy is our strength…no joy, no strength.”
“Prayer is the pure privilege of being consciously with God.” – Eugenia Price
Yet I am always with you; you hold me by my right hand…As for me, it is good to be near God. I have made the Sovereign Lord my refuge. – Psalm 73:23,28
Friday, 1/13/06
Happy Friday! It’s been a wild week around here, with the stomach flu going through our house like falling dominoes – Matthew started us off, followed by Abbie and then RJ. The rest of us are holding our breath (and sometimes our noses) hoping we don’t catch it, too.
We didn’t get to go to any therapies this week, since even when Abbie was healthy enough my well-practiced nursing skills were required by her brothers. She and I had a great time playing together yesterday, however, and I discovered that what Abbie really likes is fast movement. It used to be that if you tried to move her limbs quickly, especially more than one at a time, her body would just lock up. Now, as I do a running motion with her legs, her whole body relaxes and she just grins. We spent about a half hour in the morning and again at night just “shaking her booty” to some upbeat music. I realized that what she needs from me is to have fun and play with me…it doesn’t always have to be about therapeutic moves and program activities.
The surgeon who will be doing Abbie’s Botox treatment is away on a mission trip until early February, so we will not be doing that procedure until mid-February at the earliest. I am happy with that, because, honestly I still have very mixed feelings. This delay will give us a chance to see Dr. Tennant again (who comes to Honolulu next week) and continue to pursue some natural healing strategies before we go through the Botox process.
There’s another little miracle boy for you to pray for. AJ Ambroso was 17 months old last October when he came down with pneumonia. He was hospitalized, but her recovered well and was discharged. A short time later a mucous plug blocked his airway and he sustained an anoxic brain injury much like Abbie’s. Like us, his parents are convicted that AJ is “going to do what he is going to do” despite prognoses and pictures. His family, who lives in Colorado Springs, has a page for AJ at www.carepages.com, the page name is “Ambroso”. You can also see a picture of AJ at www.ajfund.org. Their journey is so reminiscent of the early days of Abbie’s travels, so I know how very much your prayers would mean!
I hope you have a terrific weekend! Thanks to all of you who’ve called and written in response to Abbie’s latest picture. She really is doing great, but it’s tough to catch it with the camera. I am glad that we were finally able to convey what a little light she still is.
Tuesday, 1/3/05
The new year is off to a running start! Abbie had OT for the first time in a few weeks today, so I was curious to see how she would do. A fair amount of squawking accompanied her time in the swing, but once we had her seated and playing with balls the session was great. She was “sharing” the ball by helping to push and pull it, which was fun – but there were better things in store. We wanted to stretch her arms so we put her hands on a ball and helped her lift it over her head. As it rose in front of her face up went her eyebrows, and then up went her eyes, and finally up went her head – she was tracking!! She did it over and over, and I think I giggled each time! After holding the ball on top of her head we would let it drop down to the floor in front of her, and she would then look for it. The last time we did this she lowered her head to look for it, searched around, and then brought her head back up without ever allowing it to drop all the way. That is great for her right now, since her head control declined a little over the holidays due to her infection.
She is doing great with her colors and matching, and continues to prefer looking a math problem flashcards rather than words (Daddy’s girl.) She wakes up each morning with huge grins, as if to say, “Wow! A whole new day just for me – I can’t wait!!” It sure makes my mornings joyful.
RJ and I took a stroll together on New Year’s Eve night to check out all the neighborhood fireworks. For those of you not in Hawaii – folks go a little crazy at New Year’s – it’s not too cold to hang out outside lighting fireworks all night, so they do. We just take advantage of all our neighbors and watch theirs for free. Anyway, we were really enjoying our time together, and I could feel my heart lightening after some really tough days. I realized that, as so often happens when I get down, I had been listening to/believing lies. Things like “If she were going to completely heal, we’d be seeing much more by now” or “Maybe I’m supposed to adjust to driving a handicapped van the rest of my life.”
The next day at church we sang one of my favorite songs, called “Before the Throne”. All the lyrics are so powerful, but the verse that hit the mark from our stroll the night before goes, “When Satan tempts me to despair, and tells me of the guilt within – upward I look and see Him there, Who put an end to all my sin.” I had given in to the temptation to despair, which came from the Enemy not from a “realistic” assessment of our current situation. We had friends from Los Alamos with us at church that day, and as Gwen put it, “The Spirit really showed up today” – amen to that, and my despair vanished like the fireworks smoke that had been washed away by the overnight rain.
I try to not make these updates too long, so this may be a good ending point for a lot of you. I just have to share with some of you an article that brought me to tears last night, maybe because it includes one of our foundation verses for this journey, Psalm 27:13-14. It’s for those of us who are waiting, have been waiting, and may continue to wait, especially when we feel like “nothing’s happening.”
When Nothing’s Happening
Andree Seu, World Magazine, 12/24/2005
One of my favorite stories is of famished Samaria under siege. “Hear the word of the Lord,” Elisha said in 2 Kings 7, “Tomorrow about this time a seah of fine flour shall be sold for a shekel, and two seahs of barley for a shekel, at the gates of Samaria.” He was announcing imminent bargain prices on a starvation day when “a donkey’s head was sold for eighty shekels of silver” and some dove’s dung for five shekels (2 Kings 6:25). Sure. No way.
Who will not pity Saul? Nothing was happening. The brave hero, having waited seven days for Samuel to bless the battle of Gilgal, felt he could wait no more and slew the cultic calf himself. “As soon as he had finished offering the burnt offering, behold, Samuel came” (1 Samuel 13:10)—and Israel’s first king lost the throne for all generations.
Prince Caspian blows a battle trumpet, and Peter, Susan, Edmund, and Lucy are sucked out of a train terminal and back into Narnia where the good dwarf Trumpkin’s mission is to bring the four to Caspian’s aid. Caspian’s entourage has grown faint with waiting and mutiny is on Nikabrik’s tongue: “Whether it was that the Horn was blown too late, or whether there was no magic in it, no help has come…Are you still asking us to hang our hopes on Aslan and King Peter and all the rest of it?” (Prince Caspian, C.S. Lewis). “To speak plainly,…your wallet’s empty, your eggs addled, your fish uncaught, your promises broken.”
“The help will come, “ says Trufflehunter. “I stand by Aslan. Have patience…It may be even now at the door.” And so it literally was.
Not possibly knowing of my own temptation, the Nigerian student Philip came to the café with a most unlikely gift: a postcard, which is to this day taped to the backsplash of the kitchen among wrap and rice recipes. It is inscribed with only this: “I believe that I shall look upon the goodness of the Lord in the land of the living. Wait for the Lord; be strong, and let your heart take courage; wait for the Lord” (Psalm 27:13-14)
A widow’s lament: The first singleness is anticipatory, the second a shoreless wasteland. The first is morning sun, the second a dreary thrumming of fingers on the windowsill at dusk, a mourning like Jephthah’s daughter’s. I go to work, I make sandwiches, I do laundry, tomorrow will be the same. “It is vain to serve God. What is the profit in keeping His charge?” (Malachi 3:14)
The big danger when nothing is happening is to make something happen. That’s the last thing you want to do, brothers. Here is the scenario: The marriage is going nowhere, so he gets a little action on the side, and she becomes a devotee of Desperate Housewives. It creates an interest, the illusion of a fuller life. It escapes that most intolerable of all intolerable feelings—the aching void of “nothing happening.”
But do they not err? “The eyes of the Lord run to and fro throughout the whole earth” (2 Chronicles 16:9). He is looking for those who have an appetite for waiting—when there is no sign of flour and barley for the morrow, when it appears that Samuel will not show. The devil himself knows these are the times he must fear. “It is during such trough periods, much more than during the peak periods, that [the human] is growing into the sort of creature he wants it to be. Hence the prayers offered in the state of dryness are those which please him best” (The Screwtape Letters, C.S. Lewis).
Our God is a surprising God. He “calls into existence the things that do not exist” (Romans 4:17). What no eye has seen, nor ear has heard, nor the heart of man imagined, what God has prepared for those who love Him (1 Corinthians 2:9). Do not run ahead, my soul, but wait for the Lord. It is a good thing to wait upon Him in a well-watered land. It is a fabulous thing to wait upon Him in a barren landscape. And He may even now be, as in Caspian’s case, at the very door.