365 Days Later

Another calendar year has passed and yet today my emotions are just as raw.  This time of year always leads Gilly and I to reflect back to our time with Ry in her sickest days.  It makes the good days that we are able to have so much sweeter. 
Tonight I sit here working late again and knowing I have a pile of laundry that I didn't get to, dinner to prepare for tomorrow night, a list of chores to complete and Ry's new school project for us to tackle ASAP, but today none of that bothers me.  I woke up this morning with my heart filled with gratitude.  The late night working means that I am back to work at something that I love, the laundry means that I am home and have two people in this house that are busy living life, dinner tomorrow night will have to be quick because Rylynn gets to go to CCD after school, the chores can wait and Rylynn's school project is going to be a fun one!
Four years ago we didn't know if we'd ever get to bring her home with us.  And here we are in our messy, busy life... it's amazing! 
I am thankful for the God's wonderful timing of Rylynn's precious heart.  I'm grateful to the family who chose to be selfless and giving in the darkest hour.  I'm thankful for the wonderful doctor's, nurses, and medical staff who touched our lives in so many ways.  We are truly blessed. 

Here's just one picture from this past weekend.  It's wonderful to spend time as a family living life!

OCTOBER 6

Happy 3rd Heart Transplanniversary to our sweet  girl!

I can't help, but get emotional each year as I think about how we've reached this wonderful normal place for Rylynn to be.  The experiences of that hospital that we called home for 5 long months seems like a million years ago, yet I can recall the rhythm of the monitors, the smells and lights of the different rooms, the constant chill of the space and the fear in my belly.  It was a terrible reality that based on Rylynn's medical situation and the scientific odds that there was realistically very little chance that she'd ever receive a heart in time.

But for some reason greater than I know, she was granted this second chance.  I remember calling Gilly to give him the news late on the night of the 5th and I laugh at how short our phone call actually was with such big news!  But I couldn't wait for him to come walking through the door.  I remember Rylynn being upset with my mom and I for crying when Dr. G told us and how nurse Katy was hiding in the corner of the room prior to the announcement because she was emotional and couldn't give anything away.  I recall the faces of the staff who visited with tears of joy on this day.  I remember all of our family coming together in the waiting room after driving late into the night.  This time we waited with hope and happiness rather than with the pain of so many times before, but there was still overwhelming fear and anxiety and grief.  God's grace helped us through those hours just as He had for the months that led to that day.  We are forever grateful for the family that chose to give life to others when they had to endure the pain of their loss. 

"I am leaving you with a gift- peace of mind and heart. And the peace I give isn't like the peace the world gives.  So don't be troubled or afraid."  John 14:27

Three years ago at the time of transplant 2 1/2 yr old Rylynn weighed only 18.5 lbs, she did not have the strength to stand, she could not walk, and her daily intake consisted of 5-6 bites of food, but post surgery she began healing and her body began to accept her new heart.  A heart that could support her body and allow it to grow into a young girl that is full of life.  Her wounds from the VAD began to slowly heal and the tubes and monitors very slowly began to be removed.  And most beautiful was the growth of her personality and her chattiness!  She finally began talking again.  She has always had a lot to say and after the transplant her chatty ways returned!  Oh how we had missed the sound of her voice and her giggles for so long.

And so today, three years later it is a wonderfully typical Monday.  Gilly and I are busy at work while Rylynn is attending kindergarten in a class full of new friends.  She is doing wonderfully and we couldn't ask for more.  Her belly and chest bear the unique and perfect scars of such a painful journey, but we do our best to explain how special she is because of what she's been through.  It's tough to explain to such a young child, but one that is wise beyond her five years of age.

Today, like everyday, we are just happy to be with our sweet girl.  Please keep her in your prayers always. 

Sassy

We attended a Cattle Raisers dinner with Gilly earlier this week and when we pulled up to the place, Ry was thrilled to see we'd be eating at her steakhouse!!  Can you the sass just dripping from this girl?
I can't help but smile at this picture... I just thought I'd share!

Oh how I've missed you!

It's been so long since I last logged on to my blog account that I was afraid I wouldn't be able to remember my password.  But lo and behold they still let me on!
I have sincerely missed sharing all the happy things going on in our house.  It has been a happy year here in South Texas.  Medically speaking things have been stable with Rylynn and she's growing into a fun little girl.  Now to elaborate on it all!!
Here we are 
We have settled about 300 miles South of Lampasas!  A ranching opportunity brought us here to the "Brush Country" of Texas.  Gilly has settled into his new position, I am still working remotely, and Rylynn has just started kindergarten!! 
Over the past year, we have enjoyed many hours of outside play and exploring the ranch.  Here are some pictures of what life here has been like. 

Rylynn has named several of the deer and she has them eating out of her hand.  They would come right on the back porch before we had a yard fence up.

Feeding Chubs

Feeding Scaredy

 

Rylynn and I were able watch the researchers during deer capture.  It was one of the most interesting things I've ever seen.  It's so cool to see how quickly and gracefully they gather the information they need to and then release the deer.

Blondie was happy to see Ry.

She got a puppy in February and he's a hot mess!  They make a great pair.  One of them is always following the other.  She calls him her brother, her bud, and lately she insists we call him her Chihuahua.  He actually goes by Boone and he's a great addition to our family.

 

 

Until this past week Rylynn was attending a preschool a couple of day a week in Hebbronville.  She liked play time with the other kids and was super proud to graduate from pre-K in preparation for Kinder. 

 

 

We also tried our hand at Tee Ball this spring.  Oh my gosh, Rylynn loved it!  She always looked forward to practice, games, the after game snack and the team chant.  I have to disclose that she was really terrible... I mean really terrible at the actual fundamental skills.  But none of that mattered.  In this league it was more like intro to Tee Ball and she had a blast so it was worth it.  It was great that throughout the season she had grandparents, aunts and some new friends come to see her games.  She was so proud of herself. 

This spring also meant a big birthday!  Can you believe Ry turned 5?  We did things a little differently this year.  Since we now live so far from our close family, we decided to "meet in the middle" and celebrate her big day in San Antonio this year.  This meant all of Rylynn's crazy cousins playing putt-putt, swimming and watching a movie under the stars.  We had a great time together!  I love that Rylynn loves her cousins as if they were her own siblings.  Even though we live hours away, they are so close.

Sassy 5 year old!!

The birthday girl actually made a hole-in-one!

All of Rylynn's cousins.  She loves them everyone.

Movie under the stars!

Cousins should always coordinate their outfits!



ALWAYS!!

We also were able to go on our first real family vacation this spring.  We were nervous about taking a trip so far from our medical staff.  I was also super nervous about traveling with a cooler full of medications and how difficult it would be to go through security.  Turns out it was no problem at all.  We purposely kept the whole trip simple and planned a trip that would actually be relaxing, not too packed with activities and itineraries (which I sometimes have a tendency to do).  The entire vacation revolved around the one thing that Rylynn has asked for ever since she was in the hospital.  She wanted to swim with dolphins.  So we booked a trip to Jacksonville, FL and then spent one day at Marineland so she could swim with the dolphins!  We learned all about the dolphins by a nice trainer then went to get all suited up.  It turns out, we were then informed that Dazzle, one of the female dolphins was calving.  This had not happened at their facility in nearly 5 years and everyone was by now frantic.  They suggested that we reschedule, but after explaining that that was not an option they let us feed and interact with a few dolphins for about 20 mins.  Rylynn was thrilled, but a little confused as to why she did not actually swim with them.  It was a great experience though.  The other few days we spend lounging at the pool and enjoying the family activities at the resort including putt-putt, making shark tooth necklaces, and eating lots of snow cones.  We hung out at the beach one morning, but all agreed the pool was better and it was nice to have food and drink brought right to you!  We all agreed the vacation was fun and we immediately wanted to start planning next summer's adventure.

While I packed bags, Ry packed as well.  This was her idea of packed up and ready for vaca!

On the plane bright and early!  She did great, well of course she did... they served snacks!

Kicking off the fun with the inaugural dip in the pool.

Ready to head back to Texas with Dazzle and her shark-tooth necklace.

So now here we are, with two weeks of kinder (Rylynn says we should call it kinder NOT kindergarten) under our belts and things are so great.  Gilly and I could not be more proud of how well Ry has done with this big step.  There was not a tear shed and not one hesitation about going. She asks that I be sure to walk her in each morning, which I love to do.  She comes home filled with smiles and tells us all about her fun day.  She does also come home exhausted!  They do not nap and it catches up with her despite her best try.  With an hour drive back to the ranch she catches a snooze on the way home.  We thought this was going to be a terrible problem because then she would not want to go down for an early bedtime, but by 8:30 she's out!  She is getting to know her teacher, her classmates, and the guinea pigs Snickers and Chuckles.  She loves going to the library and told me "Mom, the library is beautiful"!  The county library has been a regular stop for us each week since we moved down here so this is new and exciting to have her own library at school. I have to admit, their library is super cute, check it out!

 

The school that we have decided to send her to is small with only one kinder class of 17 and no more than two of some of the elementary classes.  The whole campus is staffed with some really great, caring people.

First day of Kinder!! Love that smile!

So for just a small amount of emotional blabbering.  Gilly and I have our hearts filled with so much joy right now.  Rylynn is just the happiest kid.  She's so smart and determined.  She hangs with the other kids even if there are a few small differences, but nothing slows her down in her mind.  This week has truly been a week of reflection for me.  There are so, so many times that I let bitterness get into my heart.  In fact, it's more times than I'd like to admit, but these two weeks have given me a much needed since of renewal.  I think God knew my faithful heart needed this. No matter where Ry's medical journey leads us in the future, I want to always remember these happy times and the smile on her sweet face.  It has made every hard moment 100% worth it. 

Here are a few more fun pictures from the past year.  I wish I had time to write about each fun happening, but this is what happens when you get so far behind... Let's hope I can get better at writing more often! Can you see this girl has a wild imagination and a funny personality??



Aggie football 2013

Getting ready for her cath and biopsy in January.  We had to have a follow up one three months after our annual.  We were so fortunate that everything came out good with the follow up. Rylynn likes to keep mom, dad and her Drs on our toes!

She was flower girl for a VERY special wedding!  Aunt Caity and DingDong got married in October!!  It was a beautiful day filled with so much fun and happiness!  We love them dearly.  And Rylynn was wearing the dress her Aunt Yaya wore at Aunt Roxann's wedding, how special!

Lela from Teen Beach Movie for Halloween 2013.

Disney on Ice

The barn cat has found a new home.  Meet Chencho.

Christmas 2013
South Texas style!!

 

Spending the day at the sand dunes at ElSauz.  They are incredible.

Acres and acres of sand that's higher than the tree canopy.

Just another day playing.

Easter 2014

Rylynn's pretend glasses that she insists on where out in public ALL the time!

If anyone is still out there reading this, I hope they enjoy catching up!