Sunday, January 26, 2014

Update and a great vacation suggestion...

Our lives have been pretty consistent since my last post, however, God has given us some sweet hugs along the way…  Grace was only up for an hour in the middle of the night last night (that is equivalent to a thousand hugs from God), I have met (in person and online) some amazing people that have also been blessed with a Downsy Doo (the thought of Grace having so many sweet friends to grow up with makes my heart smile), I've been helping coach Abby's cheerleading team (they are so stinkin' cute), my Mom is visiting for a long weekend, and despite Abby looking like she got in a fight on Thursday…
Abby's mug shot…  My poor sweetie!
 … the eye poke incident that happened at school (it was an accident of course) didn't cause a black eye or serious eye injury (which I was afraid of because it looked really bad on Thursday and Friday), Praise the Lord.

After Andrew's basketball game today...

One thing that has continued to loom in the back of my mind is when, and if, David and I will ever have a date night again.  I will see friends on Facebook post date night pictures (which I promise I love and have no bitterness toward because I think it's fantastic to feed your marriage, so please keep on posting) and that is when I'm quickly reminded that we haven't had a date night since September (besides the nights that we were both in Boston and Grace was fully sedated, so we would go grab dinner together) and I don't know when it will ever happen again… actually I do know!  Times when I find myself discouraged, feeling like we will never have another date night (without our favorite date crasher in toe, I'm reminded that it WILL (Lord willing) happen the last week of June when we go to FAMILY CAMP!!!!

Speaking of Family Camp…  If you have ever considered or dreamed about a family vacation where you can maximize your family time, couple time, laugh a lot, do outdoor activities (horse back riding, zip lining, play in the lagoon, wake boarding, water slide into a refreshing pool, etc), meet some of the most amazing families that you could imagine, have your children of all ages led by THE MOST God honoring, fun, generous, thoughtful, and selfless college students (the counselors), and above all experience rich family worship, devotions, and adult sessions that focus on how we can be better parents, spouses, etc, then Family Camp is a MUST DO for you and your family!  It is so hard for me to talk about Family Camp because it is impossible to communicate how awesome the experience truly is.  I guarantee that you and your family has never been served or loved on in the way that only the Pine Cove staff and other families/campers can.  I have learned that whether you are in a state of brokenness, like I was when we attended Family Camp for the first year, or in a state of uncertainty, about how on earth is it going to work logistically or financially, like I was our second year (I couldn't wrap my mind around going with a 10 month old with special needs, a broken heart [Grace was just 3 months out of her second surgery] and a germaphobe for a momma), but we went and God showed up and showed off in a big way.  Please check out this link to read about and see pictures from the emotional roller coaster and awesomeness that ensued as we set out for Family Camp the past two years, Family Camp Highlights!!!.  Even if you are experiencing a mountain top type of season in your life, Family Camp will bless your socks off too…  I promise.

Family Camp is never far from our minds because our sweet kiddos make sure to do the chant/cheer (thanking God for our food) that the counselors do before every meal, EVERY SINGLE night before we eat dinner (even if we are at a restaurant, although they have learned to do it in an "inside voice" in restaurants instead of at the top of their lungs like at home :-).  We can't wait for Family Camp this Summer and we pray that if you think for a second that Family Camp would be a good fit for your family too, that you will pray about it and take the plunge :-).  To sweeten the deal, Pine Cove is offering a discount if you sign up on Monday, February 3rd.  Use the coupon SGMBLOG for $15 off Camp in the City, $25 off Overnight Youth Camp, and $100 off Family Camp!  If you are interested in more information, please check out their website at

Sweet Village, Grace has her last dose of clonidine tomorrow and then she will officially be off of all narcotics!!!  Will you please pray that she would make a smooth transition, and that her vomiting and sleeplessness at night would cease?  Also, Grace has a cardiology appointment on Wednesday where she will have a sedated echo.  Will you please, please, please pray that her heart continues to amaze everyone and looks super duper healthy?  
THANK YOU for your fervent prayers and faithfulness to us on this journey! 

Saturday, January 18, 2014

God's class, Perspective 101, is back in session...

I have to apologize again for my lack of posts this week.  There are a couple of reasons for my absence, one of the heaviest on our hearts being that our poor Gracie Doo is STILL going through nasty withdrawals, for which I didn't want to sound like a broken record.   The other reason, being related to the withdrawals, is that once we get Abby and Andrew down for the night, David and I scramble to lay down as quickly as possible because there is no telling how long it will be before Grace is up screaming, vomiting, and then partying for hours in the middle of the night (it's like we've been in the "newborn stage" for 16 months :-).

So, God's class, Perspective 101, is back in session…  Two Friday's ago, I took Andrew for his 5 year old "well check" visit first thing in the morning and everything went great except he barely passed his eye exam (not sure if it's because he was not taking it very seriously or if we are in store for glasses down the road), but if he does need glasses…  bring it on!  As long as it doesn't require anesthesia, an incision, or a bypass machine, it hardly appears on my radar…. anymore :-).  In case you don't remember, my major change in perspective about the prospect of glasses, you can always check out a previous post titled The Lord's Prayer that I wrote back in October of 2012.  The more concerning issue with Andrew's Dr's appointment was his urine sample.  They found ketones in his urine, however, there wasn't glucose with it (which would indicate diabetes) or another marker that points to dehydration.  Since it didn't really make sense why there would be just ketones, they decided to retest.  Great, except this was a Friday, so I couldn't bring in another urine sample until Monday.  That means that I had all of Friday- Monday to consider the possibility of Andrew having diabetes.  I'll tell you what, it brought me to my knees.  With everything that we have been through with Grace, you would think that I could handle any "pass" that God threw me (that's the only analogy that I could come up with, I guess I've got football on the brain), however, this hit me where it hurts.  You see, we knew before Grace was born that her journey was going to test our faith in a big way because the journey was going to be hard.  I had no idea that it would be THIS hard and that God is THAT good, but never the less, we knew it would be far from easy.  When all of a sudden "my boy's" health was being called into question, it brought me to my knees just thinking about a life changing diagnosis happening to "my boy" (I would feel the same way about Abigail of course).  He doesn't have any symptoms of diabetes, but it felt so real, such a huge possibility because we know all to well what it feels like to always be a part of the very small minority (if there's a 3% risk of something, then that will be Grace :-).  I couldn't help but picture what life would be like if Andrew had diabetes and one of my many crazy thoughts was "how can I be an advocate and cheerleader for another cause."  Those of you who know me well, know that I'm a cheerleader at heart, so I love all things Up's (Down's Syndrome) and CHD (congenital heart defects).  How would I do the diabetes community justice too?  Crazy thoughts, I know :-). Above all of course, I pictured all of the risks and hardship that "my boy" would experience if he had diabetes (or any other disease for that matter).  It was on my knees that God reminded me that ALL of my kids are not mine at all, but they are ALL His and His grace is sufficient for ALL circumstances.  PRAISE THE LORD, Andrew's urine test on Monday revealed no ketones (or glucose)!!!  (Oh yeah, I also found out this week that people with a PFO, which is a tiny hole between the top two chambers of the heart that doesn't close at birth, are at an increased risk for stroke and Andrew has a PFO).  I talked to a cardiologist (one of my customers) about it and he assured me that the risk is low and that they don't currently do any sort of intervention (anticoagulation therapy or a patch via heart catheter) unless the patient has symptoms and there is a chance that it can close over time (I pray that is the case for Andrew).  All that to say, God's lesson was a powerful reminder that seems obvious to most of us, but I learned that my heart missed out on the practical application of that lesson.

I heard a speaker this week say that "God is in the interruptions in our life" and I couldn't agree more!  It is those God ordained interruptions in life that strip us of the comfy plans that our flesh desires, but they leave us changed and passionate about Kingdom business.  So, I continue to be a permanent fixture in God's classroom and am learning to find great comfort there.

Please excuse this interruption for some randomly caught snuggle photos from the week (I love catching sweet snuggles in time for a picture)…

Andrew is watching a cartoon before school and Grace is happily snuggling away...

Sweet Sissy snuggles...

Today, Abby cheered at a basketball game (they are so stinkin' cute) and Andrew had his second basketball game ever, where he got a medal for being a great listener!

Grace's funny face looks a whole lot like her happy face...

Will you please continue to pray for all of us as we shepherd Grace through these withdrawals?  Thank you!  We love and appreciate you sweet Village!

In case you don't have a team to cheer for tomorrow, please join us on the 49er band wagon :-).

Sunday, January 12, 2014

Weekend of tears, fun and withdrawals...

Please forgive me for my lack of posts lately.  Here is a recap of our weekend...

On Friday night we finally got to get together with our dear friends that we were suppose to get together with for New Years, but had to continuously postpone it due to illnesses.  This family is so special to us for so many reasons, but one of the sweetest treasures is the friendship between our girls Abigail and Julia (Ju Ju).  They have known each other since birth and watching their friendship grow over the past 6 and half years has been a true joy and blessing.  To think that they have "accountability," where they talk about things that they are struggling with (either at home or at school), talk about how to overcome those struggles by memorizing scripture or finding a worship song for them to sing during tough times, praying for each other, and then checking in with each other each to see how they are doing with that area of struggle; the fact that they are doing this at their young age is mind blowing to me.  I didn't learn about the importance of that type of relationship until I was an adult, so we rejoice that God has provided that for our children in their most formative years.  Andrew loves the idea of "accountability," so we are "accountability partners" until he is mature enough to have a friend take that role in his life (I love that I get to be that person for now :-).  All that to say, Julia's family is honoring a call that God has put on their lives to home school their girls next year; therefore, Abigail and Ju Ju will no longer be going to school together.  With all that Abigail has been through over the past 3 months we decided to wait to talk to her in depth about it.  We took the opportunity on Friday night to talk to and pray with the girls about the changes next year and while Abby shed a lot of tears, it is another one of those opportunities for them to learn to trust that God's promises (especially Jeremiah 29:11) are meant for them too and He is a God that can be trusted.  Our family always says when we are following God, even though it's hard "it will be good because God is good!"  Abigail and Andrew are best friends, so they (especially Andrew) think that one person's best friend is naturally the other's too, therefore Andrew would say that Ju Ju is his best friend too.  Check out the best friends snuggling (Ju Ju was consoling Abigail because she still had tears after our talk about next year) as they watch a movie, while the grown ups played a game in another room…

On Saturday, Abigail had cheerleading and Andrew had his first basket ball game.  So much fun!

A super sweet family in our neighborhood, anonymously donated some toys to the kids for Christmas, so Grace has been enjoying her new ball pit!  Thank you SO much who ever donated the toys and also those who so generously donated to the Caroling for a Cause fundraiser.  We can't wait to participate in such an amazing fundraiser next year!  THANK YOU from the bottom of our hearts!

One thing that has been constant all weekend long is that Grace continues to battle the nasty withdrawals (which include, vomiting, sleeplessness, agitation, jitters, teeth chattering, etc).  She has finished methadone and now we are on to the clonidine wean, which should we finished by the end of the month.  Will you please pray for her and us during this difficult time?

"Withdrawals can't squelch this cuteness"

Lastly, the NINERS won their playoff game today! YAY!!!

There is so much more that I want to talk to y'all about, but I will save it for future posts, so that I don't wear you out :-).  Love and appreciate you, sweet Village!

Wednesday, January 8, 2014

Loving the scenic route...

We are trying to get back into our "normal" routine, but I think that what I'm quickly realizing is that the word "normal" is no longer applicable to The Ross Family Household…  not unless "normal" consists of a baby that spends a good bit of the night vomiting from withdrawls and a sensitive gag reflex that is disturbed by boogers and an empty bed for half the night because Grace's world class best friend (i.e. Daddy) will sleep half the night on her floor in case she wakes up and needs to throw up (the reason he does that instead of myself is because he just knows her cues better than I do, being that they spent so much time together in the hospital) .  At least I don't have to sleep with David's t-shirt (like a teenage girl) like I did when he was in Boston, just knowing he is just a couple rooms away, under the same roof, is a blessing that I will (Lord willing) never take for granted again.  Will you please pray that Grace's vomiting stops, that she weathers the rest of her narcotic wean without any discomfort, and that her heart and lungs remain healthy?

I love this quote from Pastor Tony Evans "You can’t walk into the presence of a holy God unless you are escorted by the Son. That’s why we pray in Jesus’ name."  As we spent time praying as a family tonight and praising God for the love and generosity of so many of you, my heart lept as they thanked God "for the hearts of all of the people that have helped our family…" and then Andrew said "thank you Lord for letting Gracie have Down's Syndrome."  In Jesus name, AMEN!  When I think back to when I was pregnant with Grace, I had so many questions as to what our life would look like with a special needs child.  I don't think that I could even fathom the idea that Abigail and Andrew would love her "specialness" so much, thanking God for it, making all things Downsy-Doo colors in support of their little sister, etc…

I'll bet you didn't know that Santa doesn't just have a red Santa suit,  he also has a Santa suit in Up's colors… Now you know :-)

I'm so grateful for our far from "normal" life because it unveils rich blessings found both in the chaos and in what may seem like the mundane…

 "We love and appreciate you, sweet Village!"

GRACIE STRONG (In God's strength)

Sunday, January 5, 2014

Happy Sunday...

Happy Sunday, sweet Village!  Praise report of the day:  we were blessed to get to worship together as a family at church this morning (it's been over 3 months); I'm feeling better; despite today being a rough withdrawal day for Grace, she was a happy girl; and, the 49ers pulled off a big, hard fought win!!!


Praying that y'all have a great week and know how much you are valued!

Saturday, January 4, 2014

Frustrating Blessing

I continue to battle this relentless cough, congestion, and no more than a whisper for a voice.  It seems to zap all of my energy by the time evening comes, so once the kids are down, I have found myself laying on the couch (or maybe more sitting because laying down makes the tickle in my throat worse :-), watching college bowl games, and pondering on all of you (and others that I'm sure don't follow the blog)…  the people that have shown our family a type of sacrificial love and support that I have never known before.  Y'all have taught me so much about how to love someone well through dark times. You have lived out the verse that talks about rejoicing with those that rejoice and morning with those that morn.  As I spend time thinking about each of you, praising God for you, and praying for you I continue to ask God how I can possibly convey my gratitude to you.  After all, the words "thank you" are so freely used when someone refills your drink at a restaurant or passes the salt and pepper, so how do you thank someone that had a hand in getting a life saving flight approved for your precious baby, that chose to fight for her life with great hope when so many others spoke words of hopelessness, prayed without ceasing for every specific prayer request, sacrificially gave of their time, talent or finances, sent care packages, and messages of truth and hope day after day, constantly reminding us that we are not alone in this fight, and so much more.  All of these acts of kindness gave us great hope that we needed in some of the darkest days of our life.  The truth is, I still haven't figured out the right or adequate words to convey our gratitude, so our prayer is that somehow, some way you will know how much we appreciate you today and forever!

Another lesson learned- since it's hard for me to talk right now, I have found myself doing a whole lot more listening, praying, and pondering.  This frustrating blessing has allowed me to appreciate things that I probably would have missed had God not allowed my voice to take a vacation (maybe that's why God tells us to be quick to listen and slow to speak :-).  Some of the things that I was quietly blessed by is watching and admiring the deep, raw, and unhibited love (that boarders on obsession) that Abigail and Andrew have for Grace.  It's like Christmas morning everyday in our house because they can't wait until Grace wakes up and when she does they are consumed with loving on her and tending to her every need.

"Merry Christmas Bubba and Sissy, I'm awake now and ready for some lovin'!"
A beautiful example of this happened tonight as we drove home from dinner and Grace was fussing in the car.  Abigail and Andrew quickly went to work, trying to talk to her from the back seat and when that didn't work, they resorted to singing her favorite song, "Amazing Grace" over and over and over and over, for at least 20 minutes straight.  Each of these nuances aren't inherently miraculous, but they are the type of thing that by God's grace, happen all day, every day and I'm afraid that in the busyness of life, I can easily over look them.  I've also had my heart melted repeatedly as I see the joy that Grace exudes.  If that little sweetie catches your eye, she will give you the type of smile that makes the world stand still.  I guess my reason for sharing this with you is because I can't help but wonder if anyone else is guilty of sprinting through the day, trying to hit the mark…  get kids to school, go to work, make sure kids are picked up, do homework, eat dinner, get the kids down, try to tie up loose ends from the day and repeat…  You add on top of that all of our New Year's resolutions and it is all to easy to choke out the hugs from God that are meant to fill our tank, reminding us of His presence, goodness, and love, which are expressed so personally and with overwhelming power.  I guess that is going to be one of my New Year's resolutions…

Love you and good night, sweet Village!

Wednesday, January 1, 2014


I apologize for not posting yesterday, I'm still battling this annoying cold and Grace had a rough evening of withdrawal and congestion and cough.  Our original New Year's Eve plan was foiled due to our health status; however, we are grateful that we didn't have to cancel our New Year's Eve plans, but instead reschedule them for later this week when we are well (Lord willing).  I was bummed feeling like "this isn't how I planned to start our 2014, with more sickness!  Why can't we catch a break with sickness lately, haven't we paid our dues?" but then I was reminded that "New Years" is an earthly/man made holiday that I'm sure is less important on God's radar, so I guess He's less concerned about my desire for a marker of new beginning because His blessings are new every morning, not necesarrily on January 1st.  If you are excited about the beginning of a New Year and use this day as a marker to a new beginning, I say ROCK ON, I usually do too and I don't think that there's anything wrong with that at all, I'm just trying to keep my head and heart focused on the big picture, instead of allowing myself to be disappointed about the expectation of the day :-).

Despite being under the weather we still had a great New Year's Eve as a family beginning with dinner,

playing with new toys (thank you Dave and colleagues, again!!!), 

board game olympics (we played three new games that the kids got for Andrew's birthday and Christmas), playing "what's your favorite thing about each person in our family" (the kids often request to do this, it always makes for a sweet time), a glow stick party, and count down!

2013 was a year of exercising our faith muscles... A LOT!  Good thing God is the type of trainer that never rests or tires because He has had to spot us (lifting the weight for me as my muscles began to shake and fatigue) all along the way!  We rejoice in the closeness to Christ that we have experienced, the lessons that we've learned, the people that we have met, and the measure of love and support that exceeded anything we could have ever fathomed from you, the BEST VILLAGE ever!  Many nights over the past week I have woke up in the middle of the night with you on my mind, so I was able to spend time praying for many of you individually and collectively.  It is our honor to commit to continue to pray for each of you throughout 2014, so if you ever have specific prayer requests please, please, please let us know how we can specifically be praying for you.

As far as our prayer requests…  will you please pray for health for every member of the Ross Family (especially Grace) and for an uneventful 2014?