Sunday, November 30, 2008

Being thankful each day

Thanksgiving dawned and brought a knot to my stomach.

I was nervous about how Abbie would handle her first outing in her wheelchair since the surgery. Ray, Kyle, RJ, and Matt would be leaving for Ohio directly after dinner to attend Ray's grandmother's funeral..a mom's mind always races with "what ifs" when her children and husband board a plane without her. And, then, there was just the pain a holiday always brings - -a concrete marker of just how long we've been at this...praying, hoping, working, and a lot of days spent just hanging in there.

I was starting to get bogged down in this muddle of emotions and tears were closing in when Ray called from the other room, "Kevin is here!!" Our good friend and his wife recently had a baby, so I hoped they'd come for a visit. Hurrying into the room I said, "Where's the baby??" Kevin replied, "No baby today, but my pick-up's outside...go pick out your Christmas tree."

My mind tried to switch from thoughts of little toes to green boughs, but I had to ask him to repeat what he'd said, while Ray (who was in on this) just grinned. Kevin walked me outside to see five, huge Noble Fir trees in his truck. NOW tears filled my eyes as the scent of Christmas filled my nose. I'm an Oregon girl who's lived with an artificial tree for 12 years, ever since moving to North Pole, Alaska and finding out, ironically enough, they have to ship in trees from Oregon, making them an expensive luxury.

I was so moved by Kevin's generosity, and the thought of having a real tree, that I couldn't really speak much the rest of time he was there. But, as I thought about it later, it seems so incredibly fitting for Christmas. As I was about to break, unexpectedly, in a way I couldn't have imagined, a free gift arrived..a gift of life...just a tree, but so much more.

I was on such a high that when friends called suggesting we meet them at a beach club in the afternoon I thought, "Sure! Why not try out Abbie in her chair before dinner!!" It was a postcard-worthy day..sapphire seas meeting a turquoise sky, balmy breezes -- but not even thoughts of my waiting tree could bolster my heart. As we arrived we found out the other two families had a great spot, across the sand where we couldn't wheel Abbie. So, we all sat at the snack bar instead. Then, they all went to the roof to play volleyball -- I couldn't get Abbie up there, so I remained seated talking with my sweet friend, Loan. But, I was jealous...of parents who could take their kids out onto the sand, into the waves, up to the courts

Abbie was fussing, so I got her onto my lap to feed her. An hour of feeling sorry for myself elapsed before Ray came down to lend me his eyes. "Hey! Look at her sitting so comfortably on your lap, with those beautiful knees!!"

He was right. I was holding Abbie like all those "normal" moms I'd been thinking about. She sat with her back against my chest, knees folding right over mine. I didn't need any pillows for support or positioning for the first time in a very long time. Sweet indeed.

We got Abbie home and changed into her pretty Thanksgiving dress (pics are in Kyle's camera, in Ohio...) She slept through much of dinner, which was great for all of us. After getting most of the family off to the airport, Chase and I brought her home, changed her again and then walked over to a friend's house where we stayed, talking and laughing, until midnight.

As I look back at that day one constant pops out: friends. Kevin bringing the tree, Ray (my best friend) helping me to see, and the Arce and Jaegger families who helped me smile instead of cry. What in the world would I do without all my faithful friends...and I mean those of you who only read, who think you are "lurkers" here...your hearts are known to mine, even if your names aren't!

The rest of this long weekend has pretty much been lost in a blur of sickness. Abbie is struggling with vomiting, diarrhea, and high temps. I've been alternating between caring for her and trying to get better myself. Independently, Chase has decorated our house, inside and out, for Christmas in an amazing manner! I am going to have to take notes, since this will be my last year to have him do this.

I don't think I've mentioned that he has received a 4-year Army ROTC scholarship, and has decided to attend Santa Clara University next fall. Ray and I are both ROTC grads, and had never mentioned it to him as an option. As I told Chase when he initially raised it, "I'm not an officer anymore, I am a about the Air Force??" So, while I am terrifically proud of him, the reality of this being a year of "lasts" is beginning to set in. I also think about how he, and each of the boys, will keep a relationship with Abbie after they go away to school. I am comforted by illustrations I've received lately that remind me that family ties always remain, no matter distance or time.

I suppose one of the heartaches this week of not being a "normal" family was not having the whole family go to Ohio for Ray's grandmother's funeral. She was a precious woman who never, ever missed sending a card for birthdays, holidays or events. I so wished that I could have been there to express my appreciation and love to her family -- if you are reading this, know that my heart was there with you, and my tears are falling just typing this.

To end this on a happy note, let me share one funny story Ray related to me today. RJ and Matt are tickled to have the chance to play in snow. Today, at their great-grandfather's house a snowball fight quickly escalated into all-out wrestling in the snow. However, they had forgotten one tiny, but very important detail. Great-Grandad has a dog. As they entered the house, "Eau de Fluffy" preceded them. The clothes came off much more quickly than this lesson will leave their minds, I suppose. Rolling in snow is fun, rolling in poop is not.

May you be blessed as the Christmas lights go up...the Light of the World has come that we may always know joy, can there be any better reason to be thankful each and every day??

Wednesday, November 19, 2008

Cast Off Day!!

What a day! We got to see Abbie's new legs revealed, and I made my first iMovie. The quality is not as good on YouTube as it is on my computer, but so goes it. I just wanted some way, other than my words, to share with all of you the joy of today.

As the cutting began, Dr. B. said, "This is going to be like a birth experience."

"Oh, I know!" I replied. "She is going to have brand new legs."

"That's not exactly what I mean..." he answered.

What he DID mean became apparent as soon as we lifted Abbie to remove the worn-out, discolored, junky, old bottom half of the cast. She started howling just like she did when she first entered this world. Wow! "Think about it," said Dr. B. "she has been nice and toasty in the cast. It seems confining to us, but it is supportive and comforting for her. And then, all of a sudden, it's stripped away, the cold air hits her birth experience!"

There is a reason for the gap in the video between taking the top of the cast off and having her seated in the wheelchair ready to go...she needed all hands on deck to try to calm her initial pain and fear. While this has been an exciting day for all of us, it has been a very challenging one for Abbie. Please, if you think of her during the day (or night) pray for pain control and abatement. This is going to be a difficult couple of weeks for her as we get her bottom half moving again.

But, even with all that, I am overwhelmed at the results!! I was playing with her little foot, moving it up and down like any other child's. Genevieve and I were giggling like schoolgirls, in disbelief that these soft, flexible feet belong to Abbie. Her knees are looking up at the ceiling, instead of pointing out to the side, and everything is so beautifully aligned. Her skin is amazing as well -- I was expecting dry and scaly...not a bit. I know we need to take it slow for her sake, but I am just so darn excitied about all the things we will be able to do.

Much more to say, but it's already 1am, and I need to get my winks in while Abbie is sleeping. A triple rainbow outside my front door today was the exclamation point on a day I can only term as "Hope Delivered. Promises Kept!"

Tuesday, November 18, 2008

The Last Night

Abbie was smiling, even in her sleep, as we told her that this was her last night of sleeping in her cast. 12 hours from now she'll be a tiny wisp of a girl compared to what we've become used to. Her nurse, Dayna, gave her a beautiful mani-pedi today in preparation for the big event...purple, of course!

I am so thankful Genevieve will be the one accompanying me to the hospital tomorrow, because she loves Abbie with all of her heart. We were both giddy as she was leaving tonight, feeling as children do on Christmas Eve. I will be taking the camera and the video camera, as I am so curious about how the process of getting the cast off. If my technical skills allow, I will try to post the video.

Abbie's little body was thinking hard about getting sick the last couple of days. But, we received the "Chest Vest" last Friday, and that helped head off the Yuck Monster before he was firmly established in her chest. For my fellow brain injury families: this is one piece of equipment you should check with your doctor about ordering for you, especially with cold and flu season upon us. I have been extremely impressed with its effectiveness and ability to help Abbie rebound quickly. Abbie LOVES her "bumpy ride" as we call it, and a huge bonus is that after 20 minutes of treatment her arms are like rubber bands -- clear chest, soft arms...I'll take that 2-for-1 any day!

I almost can't believe we're here, at the end of this long-dreaded journey. This time of relative hibernation has been a unexpected blessing -- no therapies, no appointments --life has been pretty simple the last 4 weeks. And, the brilliant way Abbie came through the surgery and recovery has been beyond my wildest hope. Thank you for your continued prayers; we literally feel them.

All hail the end of the Purple Person-Hider, and the full return of Princess Abbie!

Thursday, November 13, 2008

Relationships Matter

I would not be a good night-shift employee. I find it almost impossible to sleep during the day, and instead end up watching multiple episodes of "Jon and Kate plus Eight" -- perhaps their life makes me feel like mine is simple. Anyway, the lack of sleep at night coupled with little sleep during the day led to the inevitable crash of my body this week, thus the delay in posting.

Abbie is doing wonderfully as we cruise through this final week with the cast. She will be getting it off on Tuesday morning, 11/18. I told a friend tonight that it is like waiting for a baby to arrive - the last few days drag much more slowly as the anticipation builds. I am just so anxious to SEE those little legs, to be able to massage and stretch them, and to begin this journey of the Fresh Start with her legs.

The previous post was titled "Sweet Day." The day after that I felt like writing one called "Crazy Night." Abbie has decided that she wants to talk and play at night, usually beginning around 2am. She will start talking (Abbie-talk: vocalizing, not words) to me in a sweet little sing-song voice. I lay on the floor and say, "Oh, Abbie - I hear you. I love to hear your voice, but it's sleep time!" This will go on for a few minutes, and then the sweet girl is out the door, with Bossy Girl replacing her. The tone of her voice changes and it's no longer viable for me to stay on the floor. She wants to talk face to face and play. Whoa -- be careful what your pray for. Seeing her smile will always make me smile, but by 3:30am I am begging her to go back to sleep. So, my sleepless nights have not been a burden, but they have been tiring!

I often gird myself by repeating simple little phrases that deal with an area I am trying to strengthen or focus on. When I run I often repeat "I am a finisher" as I try not to whimp out. Lately, as I struggle to prioritize my time the phrase has been "Relationships Matter." This is where I want to invest my energy and attention, and where I am so often distracted by a "to-do list" and other goals. It always strikes me that with the tiniest bit of investment -- 2 little words -- things change.

Last week I saw a cousin, Mark, whom I had not seen since the summer of 1976. We were much shorter then, I didn't dye my hair and he didn't shave. He was here with his wife Brenda and the two oldest of their six children, Savannah and Kassadee because Brenda was competing in the international Sweet Adelines competition. I had no clue what this was all about, and was quickly introduced to a whole new subculture. Wow! Brenda's 150 woman chorus, the Melodeers from Northbrook (Chicago-area) WON, and are the champions of the world when it comes to 4-part harmony. I was also treated to a performance by Brenda's quartet, just for me, in front of the convention center -- I felt like the Queen of England! The best part, though, was having Mark, Brenda and the girls over for dinner, and getting to catch up. Family is a precious thing, and having this string retied after 32 years was more profound than I had suspected it would be. They also gave up beach time on Sunday to come to Matt and RJ's football game before going to the airport. Now, THAT is family!!

Savannah signing in silver ink -- too bad the cast will probably be too stinky to keep!

Family...except for Matt who was at camp.

On Tuesday the Cheshire family, all ten of them, filled Abbie's room with love and music as they sang praise songs accompanied by Dad playing the guitar. With Walt's Austrian roots, they make me think of the Von Trapps. They have been so thoughtful -- there's not a week that goes by that Abbie doesn't get a card, a picture, or a surprise from them. I have never met another family like them, and most likely never will. Genevieve and I were in tears watching them surround Abbie's bed.

(sorry this is a little blurry -- my camera settings were changed by an identity-protected son)

Christa helping Isaac sign Abbie's cast. Christa and Abbie are the same age, and very much cut from the same cloth, so seeing her always gives me a sweet glimpse of who Abbie is on the inside.

If every mother were like Katie, there would probably be peace in the world. She is one of my heroes!

The relationship that matters most to me, of course, is with my Heavenly Father, and even there I have to focus on not letting the time slip by without intentionally building it. There are times, like lately, where I feel a bit adrift and out of routine -- lazy, tired, distracted, all of the above. At times like this I am especially grateful for His grace -- nothing I can do to make Him love me more OR less. What a resting place for my soul. I pray that you also would be finding great joy in the relationships in your life, the people around you, and the Father who loves you without end.

Three days and a wake-up for cast bound Abbie -- Freedom is near!!

Monday, November 03, 2008

Sweet Day

Ray spent the night with his princess last night, which meant that I could spend the day with her refreshed and ready to have some fun. We got out her art supplies and went to town, coloring and writing and using the prettiest stickers. She also wanted to watched her reading program videos, which I welcomed as a chance to sit down for a minute.

At the time she was laying on her left side, so as the words "arms up" and "arms down" came on I watched her raise her right arm and bring it down. At first I thought it was a fluke, but she did it each time the words came. Woo-hoo! In planning for this surgery I had envisioned months, truly - months, of her being kind of zoned out with pain and/or meds, and really regressing in the cognitive skills she has gained. Have I mentioned that thankfully, I am often wrong? (Please don't pass that quote to my husband, though:)!

She is also becoming very good again at using her voice to let us know what she needs, as in "Hellooooo, I am awake over here," and "Thanks for reading to me, I really like this book." The sounds she makes are little sing-song notes now, so sweet.

The last dose of Tylenol she took was yesterday morning, so she is completely off traditional pain meds. I am using a couple of homeopathic remedies (Traumeel and Spascupreel) and running the Biomodulator around the clock, which is keeping her really comfortable. But, I am surprised at how well she is handling the discomfort. We even put her on her tummy a few times today --definitely a two person operation! This gave us a chance to clean her cast and dry her out with my hair dryer set on cool. Her skin is looking great. In fact, the bandaging over the incision where they worked on the adductors (inner thigh muscles) has come off already, so we can see that the scar has closed completely and cleanly. I am hoping that all the ones that we can't see yet look as good.

We are halfway to Cast-Off Day already! I am anxious to see her "new legs" and get to work on moving them again. But, for today I was just so blessed to sit with her, enjoy her being very present, reading and talking and playing and praying. I feel so fortunate that God chose us to be Abbie's family.