Saturday, November 28, 2009

So, I bought this stuff on Amazon called Germ Free 24. It's supposed to create a 'barrier' to germs that last through 10 handwashings. You spray it on and POOF...all your germ worries are solved. Although I do have a penchant for As Sold on TV stuff, I'm not normally one to hop on the gadget bandwagon. That is, I have a heathly bit of skepticism...until it comes to 'Germ Free'. Let me just tell you all....I was clicking 'checkout' before I had even finished reading the product description (because there couldn't possibly be any negative effects to some chemicals that coat your skin despite soap, right?). I was dreaming of anxiety-free trips to the mall and confident mornings in the church nursery...and spraying it on our hands like a wild woman. This is it, I thought. This is how we'll make it through the winter sickness free.
And then, 3 days after our protective bubble was implemented, Garrett came down with a cold, and then a stomach bug, and then croup. Bubble burst.
I'm learning a lot lately about 'control'--both wanting 'to control' and feeling like things are 'in control'. I don't feel like I'm a particularly controlling person (but don't ask my family:), but I still go through waves of it. Especially in the last year. It usually rears it's ugly head when I feel like I can't do it all--that I'm juggling too many plates....having a hard time regulating their speed and height....sure to drop one or all of my figurative plates at any moment. Then I get Crazy with cleaning or list making or germ prevention. Feeling desperate to control what I can.
Then, feeling frustrated to have to re-learn the same lesson over and over, I remember that it's not all up to me. God tugs my heart....reminds me to turn it over, to trust. What I'm learning is that all this 'control'--both what I think I can change and the things that are already 'in place' (family, home, jobs, etc)--is just perceived. Any of it could change in the blink of an we know too well. I feel like this is one of those things you hear people tell you your whole life, but never really 'get it' until it happens to you. Live in today. Don't take anything for granted. At least that's the stance I'm choosing to take instead of my natural inclination to live in fear of change.
Living in the moment, letting life happen, not trying to plan out the future...I'm one of the keys to my (relative) sanity. This Thanksgiving was worlds away from last years. We were able to travel, enjoy family, and give thanks for a year of miracles. As I bask in the glow of the calm, I do not take it for granted. And I know, and remind myself, God's love is the only constant...truly unchanging. His plan, however I perceive it, is perfect. And for that, I am most thankful.

Thursday, November 26, 2009

Oh so thankful! Happy Thanksgiving everyone.

Tuesday, November 17, 2009

I'm not exactly a 'dog-lover'. Actually, I would say "I hate dogs".....but that's so non-PC:). I have a mental list going of reasons I dislike the things (curiously, dogs love me, but that's another post), and this made #1,117:

I was running yesterday, enjoying a little Rhianna on my iPod (which, turns out, does not make me run any faster).....when I was sandwiched between a super-mean brown lab (is this a species?) and a passing car WITH A PIT-BULL IN THE PASSENGER SEAT!!! This might not have been that big of a deal, had I been paying attention to my surroundings, and/or seen either of the dogs or the car before THEY LUNGED AT EACH OTHER!!!! Jumping, barking, gnashing of teeth. Did I mention that I was directly in the middle? And hadn't seen it coming? And hate dogs? And thought they were going to eat me for Thanksgiving? Thankfully, Dog A was behind an invisible fence....but that did not save my cell phone (that I dropped), my pants (that I peed in), or the small children (who were playing next door) who went home with all kinds of new words.

Thursday, November 12, 2009

I ran across this on Veterans Day and thought it was worth sharing. Turns out flag folding is not just about making a neat little triangle.....who knew? Well, you all probably did--but, I didn't. And, I am somewhat of an expert.....seeing as how I served as a somewhat proud member of the Sharon School crossing guard, where we folded the flag daily (and a bird pooped in my perfectly coifed bangs on the walking trail, not that I'm bitter).
Back to the are the meanings of each fold:

The first fold of our flag is a symbol of life.

The second fold is a symbol of our belief in the eternal life.

The third fold is made in honor and remembrance of the veteran departing our ranks who gave a portion of life for the defense of our country to attain a peace throughout the world.

The fourth fold represents our weaker nature, for as American citizens trusting in God, it is to Him we turn in times of peace as well as in times of war for His divine guidance.

The fifth fold is a tribute to our country, for in the words of Stephen Decatur, “Our country, in dealing with other countries, may she always be right; but it is still our country, right or wrong.”

The sixth fold is for where our hearts lie. It is with our heart that we pledge allegiance to the flag of the United States of America, and to the republic for which it stands, one nation, under God, indivisible, with liberty and justice for all.

The seventh fold is a tribute to our Armed Forces, for it is through the Armed Forces that we protect our country and our flag against all her enemies, whether they be found within or without the boundaries of our republic.

The eighth fold is a tribute to the one who entered in to the valley of the shadow of death, that we might see the light of day, and to honor mother, for whom it flies on mother’s day.

The ninth fold is a tribute to womanhood; for it has been through their faith, love, loyalty and devotion that the character of the men and women who have made this country great have been molded.

The tenth fold is a tribute to father, for he, too, has given his sons and daughters for the defense of our country since they were first born.

The eleventh fold, in the eyes of a Hebrew citizen, represents the lower portion of the seal of King David and King Solomon, and glorifies, in their eyes, the God of Abraham, Isaac, and Jacob.

The twelfth fold, in the eyes of a Christian citizen, represents an emblem of eternity and glorifies, in their eyes, God the Father, the Son, and Holy Ghost.

When the flag is completely folded, the stars are uppermost, reminding us of our national motto, “In God we Trust.

Wednesday, November 11, 2009

Lilah made it though her sedated hearing test just fine and we were able to go home that afternoon. One of her PE ear tubes was clogged, so it was replaced before they started the 2 hour hearing part. The results were something I hadn't really thought about.....she has a mild loss in both hears, with a moderate high frequency loss. Basically, this means her results put her in the 'could go either way' category for amplification (hearing aids). I could live without 'another thing', but if she needs them it's no question. We'll know more in a few weeks.
Thankyou for covering her in prayers.

Sunday, November 8, 2009

The 'equipment' is piling up around here....standers, scooter boards, special seats, strollers, bath-chairs, braces (in addition to the more 'medical' stuff we already have O2, monitors, etc).
Lilah is definitely making progress with strength and sitting. Here is her new scooter board to try and encourage her to paddle with her arms or at least put weight on her arms to eventually get something/go somewhere. Not much forward progress, but at least Garrett is having fun with the demos.

she doesn't actually mind it, but she doesn't really give it a 100% either.:)
if her 2 favorite boys aren't's just not happening.

We are really good around here...not much blogging--just living. I feel like the tasks (especially appointments) have/are ramping up for the season of sickness that is upon us. I am so incredibly thankful that we have avoided major illness so far and am praying for continued protection for that little spongy heart and those weak lungs.

Speaking of heart....fantastic news from her cardiologist that both holes in L's heart continue to grow smaller and pose less of a threat to cardiac function. She actually said that the ASD (larger of the 2 holes, and the one we had planned on surgically closing, as a 'given') may not even need closure...ever! This is a totally unexpected gift of good news and if it weren't for all the other miracles surrounding Lilah's life, would make front page news around here. Her cardiomyopathy remains sobering, but we refuse to dwell on it.

She had a "swallow study" last week that confirmed she is still not safe to drink liquids. The combination of neurological delay and muscle weakness just don't allow her mouth/throat to recognize liquids and protect her airway. She continues to receive all nutrition via G-tube....something I do not anticipate to change. But, I would really love to see her enjoy a variety of food/drink as pleasure and social participation in meals. Right now she loves Cheetos, pizza crust, and puffs...but needs very close supervision.

She has a hearing test tomorrow (Tues), for which she has to be sedated for quite awhile. Please pray for this procedure, as sedation is always a bit more complicated for L than would be typical. We are not at all nervous that it will/will not turn out that she needs hearing aids....Paul and I have long ago adopted the game plan of moving forward with whatever she needs. She is not very vocal at all and we want to make sure she is receiving all the auditory input to which she is exposed.

Honestly, there are 'updates' on just about every specialist you can imagine, but I can only deal with some at a time:). Those will suffice for now.

I am constantly reminded of God's unwavering love for me, and my family, but especially Lilah. She is His first, He loves her perfectly, and not a hair falls from her head that He does not know. I am so thankful to be relieved of the burden of 'perfecting' her life or trying to 'fix' the broken. Don't get me wrong, there are days when the pressure feels strong, the work too much. But in my heart of hearts, I know the work has been done spiritually and her reward is in heaven. I rest knowing that Lilah will know perfection for eternity. The freedom of this knowledge is great....the ability to enjoy this remarkable girl.

Sunday, November 1, 2009

I'm learning the things that I'm most anticipating my child will love (i.e. trick-or-treating) are sometimes the things he could care less about (i.e. trick-or-treating). Seriously, G acted as if we had plans to 'tar and feather' him when I insisted that he wear the costume he's had for months on HALLOWEEN!!!! Call me crazy:). But, after knocking on all of 2 doors (and by 'knocking' I mean: me dragging him by the hand and saying "come on. this will be fun" in my most encouraging voice) and refusing to put his candy in his trick-or-treat bag (because....obviously, that was for his animals only), Garrett declared that "that was enough"....
and home we went. I'm counting it a 'W' though,'s all about the pictures. I mean memories. :) Check them out-->