Sunday, January 31, 2016

G-R-A-C-E...

I was out of town for 3 days and 2 nights this week and by God's grace the kids did pretty good; however, I have to go out of town again this week.  Will you please pray the kids do well this week too?

Here is my team at work.  I'm grateful to know and get to call each of these people friends.  

It's hard seeing them get sad as they anticipate me leaving, knowing much of their struggle comes from PTSD of the unpredictability of their lives over the past 3 and a half years, since Grace has been in our lives.  This morning I was reminded that I too struggle with PTSD as our venture back to Boston appears that it may be closer than we had expected...  more on that in a minute.  Here are a few highlights from the week...

-One of my many favorite things about the Rise School is that they post pictures and videos of Grace throughout the week and the pictures never fail to make my day!  This picture has to be my all time favorite to date because Grace's smile is the purest demonstration of Grace's love for her school and the love her teachers and therapists have for their kiddos.

Here are some from snow day at Grace's school...


In preparation for snow day, they ice-skated in the classroom...  I'm so glad that they have this kind of  (messy) fun at school!

Here is Grace showing you how she spells her name and then cheers... "that spells Grace."  Clearly, we still need to work on our last name ;)
video


-GRACE GOT A BIG GIRL BED!!! So far Grace LOVES her big girl bed for the following reasons
1)  Now she "matches" her big sissy (remember how much she LOVES to match?)
2)  Her bed spread has hearts on it (a family favorite)
3)  She has all of her stuffed friends in the bed with her, her favorite being Lovey, the one the big kids made for her the fist time she went to Boston for her second surgery.  Both Abigail and Andrew recorded a message for her that she likes to play over and over every morning as she plays in her bed before we go into get her.

This is one happy and rascally little girl!

-Both big kids did a great job in their basketball games and Abigail had a soccer scrimmage.  Here's a short video of each making a basket (I'm just proud of myself for capturing one of their baskets on video because I'm officially the world's worst videographer when watching the kids play :-)
video
video


-Abigail (and Grace) was thrilled to get her hands on a baby with Down Syndrome at Gigi's Playhouse this weekend!

-Andrew lost another tooth (finally)...  another point for Mommy when it comes to the pulling teeth out score!

***Prayer request...  I learned this morning that there is a chance that Grace's cardiology team in Boston may want her to come for a heart catheter sooner than later because they are thinking that there may be value in dilating her valve at 2 years, despite her gradient not warranting it yet.  The thought is that it may help prevent complications of calcification that could negatively impact the valve replacement that she will need in the future.  All that being said, they are going to review her most recent echo images and let us know when they would like us to come back.  Will you please pray that the Lord would prepare everyone in our families hearts, take care of all of the logistics, and protect Grace from any complications whatsoever?  Thank you!!!  We trust that God's got this, but it doesn't mean I don't have to continually give any fear that sneaks in, over to Him.

Hope each of you has a blessed week!

Sunday, January 24, 2016

Gracisms...

Please forgive me for falling short on blog updates the past couple of weeks!  Here are some of the highlights from the past two weeks...

-Andrew had his 7 year old well check visit and he is in the 80th percentile for height!  That is unbelievable for our family!  David debated whether to request a DNA test because we are typically barely hanging onto the chart ;-).

-God continues to use the kids to realign my heart when it gets out of whack...  I was taking Grace to school last week and was a little (or A LOT) annoyed at the traffic in the HOV lane, just then I hear Grace singing worship songs in the back seat and it was like Divine perspective hit me over the head.  In that moment, Grace made it easy to have an attitude of gratitude that I even have her to take to school on my way to work.  There were plenty of times that I didn't know if I would get to see her as a 3 years old, much less going to and loving school, therefore slow drivers in the HOV lane are a minor inconvenience.  Praying to have this perspective in all things (like when she wakes us up in the middle of the night, gets bossy, etc).

Grace singing her favorite worship song, Amazing Grace!

-All three kids had a dentist appointment last week and I couldn't believe that Grace rocked the X-ray part!

-Grace's music teacher from school led an amazing music class at Gigi's Playhouse last weekend.  It was such a treat, getting to see how much Grace and all of her genetically enhanced friends of all ages (and their typical developing siblings) respond to music.  They love it!!!  It helps to have an incredibly gifted music teacher who knows how to capture their interest and hearts.


-Last Sunday was Right to Life day at church, the message given by Abby Johnson was absolutely devastating and inspiring all at the same time.  I am pro life, but I left church even more passionate about the sanctity of life than ever before.  All lives matter, let's not condone the killing of babies because they threaten our convenience or preference. The fact that the most dangerous place for a baby with Down Syndrome is in a mother's womb is an atrocity.  92% of babies diagnosed with Down Syndrome are aborted.  That statistic alone increases my stake in the fight for life greatly because I know first hand the fear of the unknown, but I also know the blessing found on the other side of that fear.  At the same time, I want people to know that there is grace and forgiveness for decisions made in the past, what matters is how we live in the present and future.

-The big kids earned a free dress day at school for getting enough AR points.  When I asked them to pick out their clothes they both instantly chose their I Love Homies with Extra Chromes shirt!


-This weekend, the big kids both had a basketball game where they did great!  We love watching them give something their all!  Both kids have been super blessed to have amazing coaches this season.  They have taught the kids a ton about the game of basketball in such a God honoring manner.

Abigail is #11

Andrew is #4

The big kids also raced their cars at the Pinewood Derby Race (for Cub Scouts) where Andrew's car received 2nd place for the Tiger Cub Scouts and qualified him for the finals, where he finished 8th place overall out of about 80 + cars.

A HUGE shout out to Papa Toot for ALL of his help in the creation of these fun and fancy cars.
Andrew wanted flames with the number 3 on his car.  The number 3 is for Grace, since she's 3 years old.  


Abigail wanted hers to be Down Syndrome colors, blue and yellow.


Grace continues to crack us up with her antics!  Here are some of her most recent Gracisms...

*She loves to play hide and seek, but isn't very good at it because she can hardly contain her excitement, which either causes her to give away her hiding spot by laughing or jumping out of her hiding spot too early.  Last weekend, we were at David's parent's house (so that papa toot could help the big kids with their Pinewood Derby cars) and we were playing hide and seek.  Grace and I were hiding in the shower up stairs and Grandma was searching for Grace and said "is Grace in here?"  to which Grace peaks out of the shower curtain and says "YEAH!"  

*She gets super excited if she is matching with someone (clothes, hair, etc), so we can usually get her to do something that she doesn't want to do by telling her that she's going to match someone, like "Look, Grace is going to match Bubba and eat her food like Bubba!"  She also loves to do "cheers" with people, which is also a great tool to get her to obey when it comes to eating something she's not very interested in... she'll say "cheers, sissy!"

Matching Sissy!

*She LOVES going to the gym (she plays in the big kid area), so we have to be so careful not to mention the word around her unless we intend to take her because she will relentlessly beg us to take her to the gym.  She serves as a great accountability partner to get me to go to the gym though because if I tell her we are going to the gym, it forces me to go even if I don't feel like it because she won't let me off the hook.

*She loves to watch the big kids play sports, so since they are both playing basketball she tells us that she wants to go to the game by saying "Grace go to dribble shoot!"  It's hilarious that she doesn't call it basketball, but instead dribble shoot.  During the game she cheers very passionately from the side line, basically copying everything that I say.

*I love when Grace says "cheese please!"  What she means is that she wants us to take a picture of her.  The pictures are usually ones with the dogs or her Bubba and Tither.  Here are a couple examples of her most recent "cheese please!"


*She is obsessed with the video from Abigail's 3rd grade play called "A Place in the Christmas Choir."  She loves to sing and do all of the corresponding moves along with the kids on the video.  When the video is over she begs for more with such desperation that it is almost impossible to distract her with anything else.  I love her passion for music... and her sissy!

*She loves family hugs, so one of my favorite times of the morning on the weekends is bringing her in bed with us and snuggling her.  Somehow her stinky breath is so awesome combined with her sweet smile and gentle "hi momma!" This is the view I'm talking about...
 As I lay next to her I can't help but admire her beautiful almond shaped eyes and squishy nose, while reflecting on God's grace and mercy.  I remember seeing her profile on ultrasounds and feeling certain that she would have Down Syndrome (that was before we got the diagnosis of course), which sent chills down my spine.  Now, when I look at that same profile I see abundant beauty and hardly feel worthy to call her mine.  Clearly, I'm not alone in this feeling because as I type this Abigail is sitting next to me doing her spelling homework and as she was thinking out loud for a sentence to use the word beautiful, the first thing that came out of her mouth is "Grace's eyes are beautiful!"  Be still my heart!


*A giant praise is in order for the results of Grace's cardiology appointment on Wednesday of this week...  the gradient across her mitral valve is the same as it has been for the past two years!!!  I had been preparing my mind and heart to find out that it is time to go back to Boston, so I was already thinking about how great it would be if we could go over spring break that way the big kids could come with us, etc.  So, to hear that her gradient was still a 7-8 (when it gets to a 12 it's time to go back to Boston) almost felt like a dream and then when our cardiologist said that we didn't need to come back for 4-5 months (that's the longest we have ever gone between appointments, since Grace was born) was exciting and mortifying all at the same time.  I clarified to make sure that I heard her right and indeed we won't go back to see her until mid June!  Will you please pray that there are no complications between now and then (or ever really) and that God would prepare our hearts and minds and take care of all of the details, as it relates to when we go back to Boston?  THANK YOU!!!

Monday, January 11, 2016

Christmas and New Year's Recap...

You have the joy of reading another post from David (with captions by Kristi because she likes to add her warm and fuzzy flare to pictures)!  Kristi has been wanting to update the blog, but just has too many extracurricular responsibilities at this time, so I am trying to help her out a little.

We hope that everyone had a wonderful Christmas break!  We had a busy, but rather enjoyable two weeks.  We celebrated Christmas with Kristi's dad and step-mom (Karen) the Sunday before Christmas, as they flew out to California to be with Karen's sister and her family.

The next day, Kristi's mom arrived from California to spend Christmas with us.  We had a great visit with her, enjoyed some great weather at the Houston Zoo and played games, before she flew back home on Christmas day.

This was Grace's favorite game...  she loved playing charades!!!And she was so good at it!!!






In between Christmas and New Year's, Kristi and I had made reservations to go to San Antonio with the kids (primarily because Abigail finally hit 48" and could ride a big roller coaster there); however, after joking around with our good friend, who recently moved to Knoxville, TN with their family, he stated that we should just drive there instead, after all Dollywood had about 5 roller coasters that Abigail was tall enough to ride.  After considering it for a few minutes, I realized that would be an awesome surprise present for the kids, since that is Abigail and Andrew's closest friends and they have really missed them a lot since they moved to TN. The only thing left to do was convince Kristi that driving 14 hours to TN, instead of 3 to San Antonio was a marvelous idea.  Amazingly, it did not take much convincing and with less than two weeks until Christmas, we planned our drive to TN and surprised the kids with the news on Christmas morning as a present.  Both of the kids are still talking about that being the best Christmas present they have ever received (second to spending Christmas in Boston two years ago when Grace was just released from the hospital, it's almost impossible to top that).
They had to take letters and put them together to reveal their gift and this was the end result.

Here are some more random Christmas pics...

This little elf loved passing out gifts and giving kisses with each gift she delivered!


Grace is so easily amused... she was super excited about her new Princess panties!

This face says it all...  she is most certainly a Daddy's Girl!!!

Abigail, our kid that never asks for anything (the only thing on her Christmas list was a new marker/drawing set that cost about $20), was super excited to get ripped jeans like her mommy has!

New walkie talkies that go up to 2 miles have been a huge hit (in addition to a big lego set :-)!

The big kids picked out and bought this puppy dog for Grace from school with their own money.  Grace has named him Doggie.

After surprising the kids with the trip to TN on Christmas day, we spent the rest of Christmas packing our suitcases.  The day after Christmas, we went to my parents house in The Woodlands and enjoyed celebrating with my parents, sisters and their families.

Snuggles with Papa Toot...

Fancy french braid complements of Aunt Becca...

The crazy cousins...

I love this family picture because our original babies are represented... Tucker and Twinkie!  Since we had Abigail they haven't appeared in many pictures.

A little karaoke...  I love Aunt Becca's face in this picture!

Then, on Sunday the 27th, we headed out on our drive to TN.  Kristi talked me into splitting the drive into two 7 hour days, instead of going straight there in 14 hours.  I was really impressed with how well the kids did (the big kids did such a great job serving and entertaining Grace), both driving to TN and back home to TX.  Abigail and Andrew both agreed that they enjoyed the long car drive over flying, and we sure enjoyed the price savings compared to flying.  Most of all, we enjoyed the memories made spending almost 30 hours in the car together.

The big kids loved on and served Grace (with joy) for most of the ride.

For some reason this kid didn't want to nap much, so getting to hold Abigail's "Lamby" always seemed to help.

Once we arrived in TN, the kids were overjoyed to see their friends and we were grateful to see Bryan and Kristin as well.  We went to Dollywood and Abigail and Andrew rode their first upside down roller coaster.  Abigail was tall enough to ride 5 roller coasters, which was exciting since she would have only been able to ride one rollercoaster in San Antonio, where we had originally planned to go.  The rest of the time was spent just hanging out at the Glass' house and we really enjoyed the opportunity to just all spend time together.

Ross and Glass Reunion!



One of my favorite memories was listening to the kids pretending to be firefighters...  so cute!

Headed to Dollywood with 30,000 other people :-)

Grace loves the carousel, but literally holds on for dear life...



One of Grace's favorite rides!

Andrew chose to ride some baby rides with Grace for a bit instead of doing more roller coasters.



Grace wanted to check out the Children's Hospital in Knoxville, so she got to go and get a chest x-ray to make sure that she didn't have pneumonia.  Can you see her special valve in the x-ray?  Pretty cool, huh?



Some of my favorite pictures of our dear friends with Grace...

Don't mess with these cuties...

We got to meet some families from our friend's church and one of the families had a little guy with Down Syndrome who was about a year younger than Grace.  Such a treat!

A little Bubba and Gracie love...


Beautiful, but cold New Year's Eve!


Grace loves her buddy, Noah, who is 10 days younger than her!  They opted to stay warm inside.

Then it was time to say good bye :-(.  The tears lasted for the first 2 hours of our drive...

But, Grace, the great comforter, went to work!

After having such an incredible Christmas break, it has not been the easiest to jump back into the normal work and school routine.  A sweet conversation we had the opportunity to have with the kids this week happened when we were doing a devotional with them.  After finishing the devotional, the conversation continued and out of nowhere Andrew broke down crying because he was worried that Grace might not be able to go to heaven because he was worried that she might not understand enough to believe that Jesus was willing to die on the cross for her sins.  It provided an opportunity for us to reassure him and have a great conversation about the goodness of God and His perfect wisdom and plan.  Just because Grace won't have the same capacity to comprehend as we might, does not mean that she will not be able to grasp what Christ has done for her.  We reminded him that just as the Holy Spirit does the work in us to help us believe, He can also work in Grace to help her believe.  I am thankful that our little 7 year old loves and cares for Grace so much!  Praise God!

Abigail and Andrew had their first basketball game of the season on Saturday. We got to meet with our Life Group (full of precious families), teach Children's Ministry, Kristi led a 3rd grade girls Bible study, Andrew picked up trash at a local park with his Cub Scout den, and Abigail got to do some yoga and listen to a girl athletes nutrition talk.  It's been a busy, but blessed weekend to say the least.

 Notice Grace in the backpack on David's back while picking up trash...






We hope that your New Year is off to a great start!!!