Easter Weekend 2013

Usually if it is cool and rainy on Easter I get a little whiny.  I love to be outside on this most holiest of days, but today I do not mind taking it easy inside.  We have had two VERY busy days and today we are thankful to be home and cozy. 

Friday after our full day at UVA, we spent Saturday from dawn to dark at a baseball field watching Kyle play in his first travel ball tournament with a local travel team. 

Playing so many games in one day allowed him the opportunity to play many different positions.  He got to play left field, right field, third, and second base.  He is playing on a U12 team which means that lots of the kids on the field are older and bigger than he is, but it is a great experience for him. He is spending time with several of his buddies, meeting new friends, and having fun competing. 

The first game of the day was chilly but the sun came out and warmed it up nicely for the other games. 

Between games we went and bought him a new bat.  He had been saving for one for a while from some Christmas money and we finally found one he liked.  At his first at bat with the new one he hit a nice single!

Kyle with his buddy Luke and Luke's Dady, Wayne who is the coach. 

AFter getting in late last night, we all slept in a little before checking out the Easter baskets. 

Hope Madeline was thrilled with her basket that had a Doc McStuffins headband and a big book of boo boo's! 

Easter baskets

Kyle was thrilled that the easter bunny knew he like mints and sparkling waters:)

David was thrilled that the easter bunny left him some plums.  David would prefer a plum anyday to the candy that was in his basket. 

I felt like a spoiled princess this weekend.  Since the tournament was so close to my parents house we stayed with them Friday night.  Hope and David came with Pops and GG and watched one game, but for the early morning and after dark games they stayed at GG and Pop's house.  Not only had they watched the kids for us, but Mom had ironed the kids clothes for church today and she tucked a homecooked Easter meal in our car so we could enjoy it today.  We are so blessed. 

This morning we finally got ready for church (no early service for us today) and it was raining when we left for church so Easter pictures had to be inside today.    Here is our sweet three year old.  I had a hairbow picked out to match her dress, but as you can see she chose to wear the Doc McStuffin headband that was in her easter basket. 

Handsome and healthy-looking David!

Our sweet three on this resurrection morning. 

Our handsome 11 year old!

They cooperated so well for pictures that they asked to do a silly face picture so here it is!  Cute little nuts:)

Today I am reflecting on Jesus' resurrection and the song Worthy is the Lamb is stuck in my head.  It sums up this most awesome day perfectly:

Thank you for the Cross, Lord

Thank you for the price you paid

Bearing all my sin and shame

In love You came

and gave amazing grace.

Thank you for this love Lord

Thank you for the nail-pierced hands

Wash me in your cleaning flow,

Now all I know

You forgiveness and embrace

Worthy is the Lamb

Seated on the throne

Crown You now with many crowns

You reign victorious

I love that song so much and today on this Easter I am overwhelmed in the Love that was shown on the cross so many years ago for me.  Happy Easter from the Robinson Family! 

Our Day in Charlottesville

We had a wonderful family day in Charlottesville! We left home before 8 to meet at the UVA Development office to meet the team from the Children's Miracle Network.  I dressed all five of us in the blue family so we would not clash!  We had no idea what to expect, but the team was so kind and patient with us.  We have never done an interview like that so we were super nervous. 

Our little ham, David, loved being the center of attention.  Kyle was his polite yet reserved self and Hope took her usual thirty minutes to warm up.  They interviewed the kids together which as a parent was precious to watch. 

Here they are being interviewed.  It always makes us nervous when David has a microphone in his hand:) We hope our footage turned out well. Mike and I looked very loving with our arms around each other while we were interviewed, but it was really so we could poke each other to answer the questions!! HA!  This was our first experience with anything like that, but we feel honored to be a Miracle Family.  The team was so gracious and provided us lunch in between our interview sessions. 

After we finished with our interview, we headed to clinic.  David was silly and in rare form:)  We hate the reason that we have to go, but it is always fun to see the clinic staff and friends.  David has put on three pounds since our last visit a month ago!  Woot woot- our boy now tops the 63 pound mark!  Our clinic visit went smoothly once the labs were drawn.  His Creatinine was steady at .8 which is okay.  All his other labs were steady and his blood pressure was good.  We love clinic visits where we leave with good news:)

 

Our pictures are out of order, but here is David with Mr. Ryan, who is the UVA Children's Miracle Network Coordinator. 

Each of my children got a goody bag after their interview and Hope got Cleo from Clifford and David got a cool owl.  They love these new friends and they rode home with us all buckled in safe and snug. 

 

David dressed like his favorite doctor, Dr. Belyea, today in his shirt and tie.  As usual, David had to give Dr. Belyea a quick checkup with his own stethoscope.  We are so thankful for the amazing staff at clinic. Dr. Belyea is always so patient with our long list of questions and he is so great with our David.  We feel so blessed that he is David's doctor. 

 

Tonight we stopped over in Radford for a sleepover with GG and Pops.  Kyle has a travel ball tournament locally here tomorrow so it made sense to stay here close by.  Mike and I even managed to sneak out for a dinner date tonight and a quick trip to buy easter basket goodies.  When you have been married for 13 years and have three kiddos, a dinner date and a quick trip to Walmart is a hot Friday night date!! :) 

Picture Dump

We have only been in school two shortened days this week due to the snow, but it has still been a busy week.  I took a few minutes to dump some pictures off of my phone and I found a few gems.

Mommy and Hope being silly!  Hope is pretty shy, but at home she is loud and giggly. 

This picture pretty much sums up our kiddos.  Hope and Kyle are cheesing but David is being David. 

Hope is really into reading right now and here she has "encouraged" her brothers to stop what they are doing and listen to one of her little books that she can read.  She is also obsessed with Mary from the bible and she pretends to be Mary carrying baby Jesus around.  She also makes me look up the song Mary did you Know on Youtube and she belts it out while carrying around her "jesus"

This enormous blessing came in the mail today!  Last June David was medflighted back to UVA one night when he was unresponsive and his fever was rising.  We have been battling this $34,000 bill for that helicopter ride for months and finally out of the blue today we received this awesome letter!! If you can't read it, it says that the bill has been paid and that his account is now closed!!  Woot woot!!!

Today Hope had  a follow-up visit with the pediatric cardiologist here at our local hospital.  She went to see him when she was a newborn and then we saw him when she was a year old.  Today was our two year checkup to see if the small hole between her lower chambers of her heart is still there.  She had to have an EKG and an echocardiogram which she did not love.  She did great; however, and the doctor told us that she still has a VSD (hole) between her lower chambers that he can hear but it is too small to pick up on the echocardiogram.  There is a 95% chance that it will close on its own when we return in two years. 

In the last two days Hope has had two preschool Easter parties.  She has loved every minute of them and has a ton of candy to prove it!  Here she is with Brady and Sydney chowing down on party food.

With both classes we made resurrection rolls and they were a big hit with the children.  They were amazed that they rolled up the marshmellow in the crescent roll but just like Jesus the marshmellow is no longer when it comes out of the oven!  Such a  cool hands on lesson for the little ones.  I will make these this weekend with my own children!

 

Of course both classes had an egg hunt inside because it is so cold and windy but they didn't care-they had a ball!  We are now officially on spring break and our first day of break tomorrow will be spent heading to Charlottesville for our clinic appointment.  We pray that his creatinine will be where it should be and that the visit goes smoothly.  We are all five going since we are off together! 

 

Before our clinic visit we have a meeting with the children's miracle network team to film a video.  This is our official first event as a miracle family and we are honored to be asked to help make this video to promote UVA children's hospital.  Happy Spring Break!

Needing more Jesus

http://www.youtube.com/watch?v=N-KM_zpwfr4

My new favorite song right now is Lord I Need You by Matt Maher.  (Click on the above link to enjoy this amazing song)! This most holy week I have been reminded how much I need Jesus in my daily life.  He is everything to me and because of this crazy weather we have been homebound which has given me time to read my bible and catch up on the History Channel's production of The Bible which we have DVRed. 

This world can be stressful, crazy, overwhelming, and full of hopelessness.  I need my Jesus to:

Calm my fears about David's future.  We head to UVA this Friday for a clinic appointment and his Creatinine has been on my mind.  We need the peace that comes from Jesus to face what is in store for David down the road. 

To help me be the wife and mother that He wants me to be.  I need Jesus to help me be patient, kind, and loving.  How can I point my children to Jesus if I am impatient and frustrated??  I need Jesus to help me be the loving and patient wife that He wants me to be.  My husband carries a heavy burden daily between his stressful job, David's health concerns, and this family.  Mike carries the burden well with integrity and class and I do not always give him the props for that.

To remind me that he has put 36ish children in my path everyday that I can shower with love as I teach them not only their alphabet and numbers but about the true King of Kings.  May I never forget what an honor it is  to start my day each day praying with a classroom full of preschoolers. 

Help me not be judgmental.  The Mommy wars are alive and well in our neck of the woods and it is  SO easy to start judging how others are raising their children.  I can easily fall into the trap of thinking my way is the right way and acting judgmental towards others.  May I extended grace and love to others instead of a sharp and judgmental tongue. 

This family needs Jesus to remind us that love and time reign over "stuff" and that we are here to serve Him and others.  We tend to get self-absorbed in whatever season we are in and I pray that my children will see that no matter what Jesus comes first.

Enjoy this awesome Matt Maher song that has reminded this judgmental and impatient wife/mother that to be the person that I need to be, I desperately need more Jesus.

Easter Festivities

We could really care less that the weather is very un-Easter like this past weekend.  We just moved everything inside!  We are under a winter weather advisory for tonight as we are suppose to get 2-6 inches on snow tonight??? 

Saturday morning we headed to Radford to visit with GG and Pops.  We met them in Dublin for breakfast with the Easter bunny.  It was yummy and it took quite a bit of encouragement to get our kids near that bunny. 

Sweet Kyle even tried to show Hope and David that the bunny was nice by posing for a picture for them.  He is usually such a good sport to do anything to help his siblings. 

It finally worked and David posed with the bunny!  Hope NEVER did but that is okay-our girl is just a little shy. 

It has been so cold/wet/snowy that outside Easter pictures were not an option so we set up pictures inside in my grandmother's wing in my parents house. 

This is the 2013 Easter picture inside:)

Today we got to enjoy fellowship with our local Down Syndrome group's annual Easter egg hunt.  Last year we were unable to attend because David was sick in Charlottesville, so we made up for it this year.  Hope loved it and she insisted to wear her running shoes with her Minnie Mouse dress so she cold run faster to get the eggs.  She is a competitive Robinson after all!! 

Kyle is too old to hunt for eggs, so he was the hider of the eggs and the helper.  A school library is a pretty good location for an egg hunt since we had to be inside. 

Here are some of the cuties from our group.  We love spending time with this amazing bunch of folks.  We are so blessed to have this community around us. 

Here is sweet Emily and guess who gets to be her preschool teacher next year....... ME!!!!!  She has enrolled in our three year old class next year.

Angie is always the hit of any party and Kyle adores her.  She is hilarious and we all enjoy her company.  Angie wants me to take her to Pennsylvannia to meet Abbie Lee Miller from the show Dance Moms.  I also got invited to her sleepover for her birthday-no boys allowed!

Hope sat at the girls table with Marley, Caroline, Susan, and Angie. 

David and I ended the night with the Easter cantata at church which was simply magnificent.  Being surrounded by friends today at both church and the egg hunt, coupled by the reminders of what this awesome Holy Week is all about our hearts are full of love and peace tonight. Happy Holy Week! 

Happy Down Syndrome Day!!

 Today (3-21) is National Down Syndrome day where we celebrate all our friends that rock that little extra chromosome that they were blessed with.  This is a picture of Kyle and Caroline from kindergarten-aren't they precious?! 

 Raising a child with Down Syndrome is not something any parent would ever ask for; however, I bet if you offered a family that already has a child with DS an opportunity to adopt another child with Down Syndrome they would jump at the chance. 

 Having David in our family has blessed us all tremendously.  He has taught us so much about life and love and we are forever different people because of him.  I will admit to shedding many a tear over David when the reality of his academic ability shows up. 

 But the joys of raising a child with DS far outweigh the moments where your heart hurts.  David makes us belly laugh everyday.  He has also made me re- evaluate how I vote in political elections, brought me closer to our Jesus, and made me slower to judge others.  He pushes me to see the world the way he does-one without prejudice, malice, or judgment. 

 His face and his smile would melt the hardest of hearts. 

 The milestones are huge victories because the work to attain them came with lots of sweat and tears.  David has far exceeded our expectations and I cannot wait to see where the future takes this amazing little guy. 

 Because of Down Syndrome and his post-chemo limitations,  David will never be able to have all the opportunities his brother and sister will have.  As his parents we are okay with this because Jeremiah 29:11 helps us to see clearly that God has a plan for each and everyone of us.

For I know that plans I have for you..They are plans for good to give you a hope and a future.

Despite David's limited intellectual ability  he may never be the valedictorian, but he may be one of the wisest, honest, and kindest kids. 

Despite the late effects from all the chemo and radiation that David has received God can still use him for His glory.  You do not need both kidneys to teach people how much God loves them.

When you love and trust Jesus you can rest in the knowledge that He created us all for His glory-even those that rock that extra little chromosome.  Today we celebrate the little blessings in our life that have that little extra chromosome so I believe, we can all see more of Jesus here on this Earth. 

Princess Party

We had such a wonderful weekend this past weekend.  Hope was invited to a cute princess party and she got all dolled up in her Cinderella outfit! 

I felt like we were getting ready for the prom-she took a bubble bath, we did her hair, put on a little makeup, and got her tiara firmly in place.  We ran out of time to do nails, but as we were putting her dress on she said "Mommy it is hard work being a princess."  Amen sister:)

I am in awe of how fast time is whizzing by with this little lady. I cannot believe she will be four this summer.  She is obsessed with books and wants to read, spell, and write all the time. 

 

Amazingly there were three cinderellas at the party!  It was a sweet  party and Hope had a good time.  The boys stayed home while we did the princess thing. 

 

Sunday Mike had to head out of town for the night.  Those are never fun, but after he left the kids and I vegged on the couch and caught up on the bible on DVR.  Wow-we are enjoying this mini-series so much and we are all learning so much.  We have not had a lazy day at home in so long and it was so needed.  Except for church and an evneing trip to McDonalds for dinner we were home snuggled under blankets.  The good news is that Mike is already home from his meeting he had to attend out of town.

 

The pace of life is picking up now that Kyle is playing both Little League and a travel baseball team.  He is devastated that basketball is on a break now but baseball practice is keeping us hopping.  Between my workout clothes, Kyle's baseball clothes, and daily laundry for five people, our washer/dryer is going nonstop. 

 

We are super excited to head to Charlottesville on March 29th for David's clinic appointment. Our family is going to be interviewed for a video that will appear on the UVA children's miracle network website.  They want to make David one of the "faces" of UVA children's hospital.  I asked a bunch of questions such as wardrobe because our dear David could be decked out in a shirt and tie or he could want to wear his Lebron James look:)  Ryan, our contact at UVA for this, said to let David be David.  All five of us will be on this video since we will all be there for the appointment that day.  I am super nervous but we are thrilled to be able to give back to such a wonderful place.  We are honored to be called a Miracle Family. 

 

We know the true miracle comes from God who used the amazing staff and facility at UVA to help us get through the worst year of our life when David was in active treatment for cancer.  The true miracles  are that David survived the ordeal, we are closer to God than ever before, and we know how precious life is because we live with the fact that cancer can rear its ugly head anytime.   

Ouch My Heart

My heart got a wee bit trampled on today while driving home with my kiddos from school.  We were chatting about the upcoming weekend and what was on our agenda.  I reminded Kyle that he had baseball practice tonight and tomorrow and I wondered if he felt well enough to suit up and go.

A small voice from the back of the car piped up and said "me mom my cleats. Me play too.  Good thrower."  My sweet, brave cancer warrior heard baseball and did not want to be left out.  My heart shattered.  Between his disability and his kidney issues, baseball is really not an option for him.  He is too old for Tball and his slower reflexes and hand-eye-coordination make the next level of pitching machine over his head.  He could seriously get hurt out there. 

My eyes welled up as I tried to explain to him that he is swimming now that basketball is over because baseball is not an option due to his kidney.  Then he said "But Mom Jesus made kidney all better.  I play."  Oh my heart....

How do I get him to understand that he cannot play baseball like his school buddies?  How can he ever understand this delicate kidney function balance that we will have to endure his entire life?  How will he ever feel like he measures up when he is so limited in his options?  Issues like this are hard on any Momma but especially a Momma who knows her child is "limited" on this Earth.  He may not rock his numbers yet, be allowed to play ball, ride a horse, or jump on a trampoline because of our new "post-cancer treatment life" but our faith reminds us that God has and will continue to use this child for His glory despite his earthly limitations.

Today not only broke my heart but humbled me.  I have been guilty of complaining about all the sports and activities my kids are in and how I feel like a human taxi cab shuffling my kids around to all their endeavors.  Today I will stop.  Today I will just be thankful that my kids are healthy enough to do the things they love. 

So what is Kyle's travel ball practice is 25 minutes away-at least he is able to get out there and play a high level of ball.  His brother would kill to be out there. 

So what if most of my evenings and weekends are spent in a gym or at a field.  I will let today remind me that it is a blessing to get to cheer your child on in what they love.  Cancer has robbed David of several of his loves because he it took one of his kidneys forever limiting him.

So what if Kyle pitches a bad game or Hope flips on her head wrong at gymnastics-their brother would do anything to be out there despite the outcome.

Today I will stop complaing about early AAU tournament games, late baseball games that go into extra innings, or the lack of "down time" we have as a family because of sports.  Today my wise, yet limited, son reminded me what is truly important.  Thank you David for once again teaching this stubborn Mommy another important life lesson.  God blessed us when He gave us you.

p.s. our local little league president has informed me that in a nearby town there is a little league for children with disabilities called challenger league that would be perfect for David.  We are eager to look into it after we okay it with the kidney doctor.  There are options for David like this that we are eager to explore!

Limping Through

Between the time change, Momma's new 5K training program, the cold and dreary weather, and the germs in the house we are limping through this week.  Mike has been extremely sick with a nasty respiratory viral thing.  He did go to the doctor but he has not slowed down at all.  He has been pretty miserable. 

Kyle's asthma is not exactly under control this week.  We hope to see his doctor later today but he has no energy and is miserable.  He has not missed school yet this week but he can barely walk up the stairs without having a coughing attack. 

I am enjoying this Run for God even if I have hit the advil bottle more this week than ever!  Ha!  I am loving the social time running with friends and I feel confident saying that I would not have made it through the workouts without my friends.  For now we are training on the treadmill at the gym because it has been cold and dreary here and I am a little too prissy to run out in this mess. 

Come on spring this family is ready for warmer temperatures and hopefully a germ-free house!

Momma's Showing her Age

I am still glowing from our awesome weekend with David Crowder.  It was a wonderful night that neither of us will ever forget.  Saturday night I was also blessed with a night of praise with Josh Wilson, Colton Dixon, and Third Day!  Saturday night three friends from church and I went to Mellow Mushroom for dinner and then we went to the show.  Two late nights from awesome concerts wore this Momma out but it was so uplifting to sing praises to our God with friends. 

I have been a Third Day fan for many years.  They have been together as a band for twenty years and I love their old school songs.  I remember listening to their CD on our way to childbirth classes for Kyle twelve years ago.  It was a loud concert but it was wonderful. 

Sunday we spent the entire day in a gym watching Kyle and the Hornets play in their last AAU tournmanet of the season.  My basketball player Kyle is devastated that the season is over for now-that boy loves his hoops. 

Monday we were all dragging due to day light savings time-how does 60 little minutes do so much damage??  Monday was also our first training day for our Run for God.  I met two friends at the gym yesterday after preschool to do our workout for this bible study.  I will admit that it kicked our tails and today I went out to buy new shoes for running.  Wow-a workout that looked so easy on paper had three Mommas huffing and puffing!  I am excited to grow in my faith and to strengthen my body through this 12 week course but I pray I do not end up in traction:)

Tonight Mike and I have counted the minutes until bedtime.  I have another workout tomorrow with friends and he is very sick with a viral bug.  Our household will be very quiet very soon:) 

As wonderful as all the concerts and basketball have been the hectic pace is catching up to me tonight.  I am so thankful for all the fun memories we have made over the past few days.  I will always be thankful to be sleepy from fun and new memories.  Cancer has taught us that memories and fun rank higher than anything.  If you see me on the streets this week just know I know I look tired and old. I am stiff and sore from my workouts and I am pale and tired from two late nights. Also know that on the inside I am thankful and blessed for the memories we made this past weekend.  Good night!

Our Magical Night With David Crowder

I am one tired Momma and as I write this sleeping beauty David is still in dreamland dreaming about our magical night with David Crowder. 

David's choice of dinner before the show was Wendy's:)  It was his night so despite all my other suggestions, we ate at Wendys. 

We arrived at 6 for the meet and greet.  Unfortunately that had been moved until after the show so we were there way early for the 7:30 show.  The blessing of getting there early and David's desire to run helped us score FRONT ROW seats!!  We could not believe it. While we waited for the show we bought a tshirt, ate some M&M's, met new friends, and anxiously awaited the show. 

Amazingly some amazing youth from Royal Oak Prebyterian were sitting right behind us and thanks to Kate, Olivia, and Lyndsey for being so sweet to David. 

After the opening act (who was really good but David was put out that he had to wait longer for David Crowder) he finally came on stage!  This is how close we really were-no need for a zoom lens when you are this close. 

David actually took this picture!  The concert was unbelievable!  We danced, sang, clapped, and I was genuinely sad when it was over.  It was a cozy and intimate setting and David Crowder is really hilarious with his random stories. 

After the show, we finally got to do the meet and greet.  David was ecstatic and we waited patiently and he finally got to meet him!!!!

Two matching David's!!!  He was so sweet and kind with David and as promised David  invited him over to our house to play xbox:)  It was such a special end to a wonderful evening! 

David did dress to impress in his shirt and tie and David Crowder was impressed with his sense of style and fashion:)

 

During the opening few songs, David wore me out asking for How He Loves and finally about five songs in we heard the familiar opening chords to the song and David jumped up and started dancing and praising.  I could not watch the show for watching my boy enjoy his all-time favorite song! 

Thank you to the Moorers for making this special night happen for us.  I will never forget this special night praising our God with my boy who reminded us all how much we are loved by God.