A Dream Coming True

In September my high school class held its 20th reunion.  I was not able to attend the reunion, but it did stir up a lot of memories of my high school years.  The things that stand out to me the most were the prom, dance recitals, church basketball, my sweet 16 birthday party, and youth retreats.  To this day when I walk into the Anderson Civic Center or the Fine Arts Center at Anderson University the memories flood in of some many fun nights that I shared with my friends.  For many, too many, children these are experiences that they will never have.  Through no fault of their own, they live in circumstances that make these rites of passage unattainable.  

This fact became a reality to me about five years ago.  Our niece was in the 5th grade at the time and was planning for the big field trip to Washington, DC.  We had participated in several fundraisers that she and her classmates were doing to raise the needed money for the trip.  At that time I was involved with a local foster parent association and was responsible for the emails.  An email came to me from a caseworker explaining that a child in care wanted to participate in this trip but the foster mom could not pay the full amount.  The caseworker was asking for assistance to cover the remaining cost for the child.  After reaching out to a few people I was able to get the needed funds and the child was able to participate in what was likely a once in a lifetime experience.  

It was that day that the wheels in my head and heart started turning and a dream was born.  I didn't know when or how, but I knew that someday I would make these dreams a reality for kids in need.  Over the last few years that dream continued to grow and I started putting things down on paper and figuring out how to make it happen.  In February of this year, I contacted a consulting firm and officially started the process.  I reached out to a few like minded people and created a board of directors.  

On September 28, 2016 (Reese's adoption day anniversary) we received official notification from the IRS that we have been approved as a 501(c)3.  It is with great pleasure that I present to you: 

A Night To Remember exists to create positive, memorable experiences that would otherwise be unattainable for children with special needs or living in the foster care system.  Our goal is to provide these children with typical experiences such as birthday parties, scholarships to participate in recreational activities, provide equipment for recreational activities, prom, field trips, youth trips, etc.  

I will gladly share more details with you and tell you how you can be involved.  We are currently building our website and Facebook pages.  You can like our Facebook page and follow us as we take the next few weeks to get ourselves established and prepare to fundraise this winter.  

One way that you can support us is by purchasing a 2017 calendar featuring the very children we are seeking to reach out to.  Our calendar is full of former foster children and children who have special needs.  The calendars are $10 and we will be taking preorders through Wednesday, November 23rd.  Calendars should be available for delivery the first week of December.  The price may increase for calendars ordered after the 11/23 deadline.  Here's a little preview of some of the sweet faces you will be able to admire all year long: 

Parenting Win

There are plenty of days that I feel like a total failure at parenting.  Have you had those days?  Of course you have?!?  (Please tell me you have!)  Then there are days like today.  Days when your kids make great decisions and prove that they are listening and you aren't a total failure.  Days when you raise your hands and praise the Lord (while doing a happy dance) because they got it!  It may have been one tiny little thing, but they got it!  It's that glimmer of hope that you are raising someone who will be a compassionate, considerate, and upstanding member of society.   

Most days I wonder if my children will ever be able to be productive members of society because they seem to lose their minds when we go out in public.  Every time is like the very first time.  This morning we had family pictures made and, of course, an unnamed child had a meltdown in the car as the photographer was pulling in.  After the photo session, we went to breakfast at one of our regular spots.  One child was throwing crayons and menus, sneaking things from the apron of every waitress that walked by, and licking the table.  (I'll let you guess which child.)  

In the car, we told Reese about the plan to take him to the Furman Soccer game tonight.  He has become interested in soccer and we thought it would be a fun (and cheap*) outing for a dad date.  When we got home we sat down with his spending bank.  We settled up a debt he was responsible for and started talking about the soccer game.  Bryan agreed that he would buy dinner but Reese was responsible for the tickets to the game and anything extra at the game.  The tickets were $4 each and we told him to expect a drink to be $2-$3.  I asked him how much money he wanted me to take out of the bank and he said $6. We thought he misunderstood and explained that the tickets would be $8.  He said, "I know, I want $6 extra. Daddy will need a drink too."  

He's ready in his Furman purple!

Despite the days he tells me, "you are the meanest mom in the history of mean moms," days like today remind me that he does have a precious tender heart.  It reminds me that the Lord is in control and is molding his heart to be like His. The days he asks to take extra money so that he can treat me to a snow cone show me that he loves this meanest of mean moms. We must be doing something right!

As I was typing this came through on my phone:

We are clueless about soccer, but Dad is smiling and letting him enjoy!

*Side note: Furman has athletic teams in most popular sports and the tickets are incredibly cheap.  Many don't charge for kids under 12 at all and only $4-$20 for adults.  It's a great way to introduce kids to college sports.  We love to make a day of it and picnic and walk on the trails around the lake. 

   

To Brinkley On Your Birthday

Four years ago we began a journey that I could have never imagined.  For thirty-three long weeks I had anticipated the day that you would join us.  Many (too many to count) days a sickness, two (sometimes more) doctor appointments every week, and countless hours of prayer and research went into those thirty-three weeks.  

There were days that I was unsure that I could do this.  The day the ultrasound tech saw that something wasn't just right with your heart.  The day Dr. Fredrick told us that there was a pretty significant chance that you had those precious extra chromosomes.  The day the genetic counselor called and confirmed those suspicions.  The day Dr. Raunikar told us that not only did you have special chromosomes, but you had a special heart too.  That was the day he prayed with us and let us know that God was right there, this was not a surprise to Him, He has a purpose for you, and that we would be supported the entire way.  (That was a really scary one!)  

So many of those biweekly appointments brought new concerns about how long you were going to hold out.  There was a day I asked Dr. Nuthalapaty how long he thought you would be able to hold on and he told me that I needed to pray that we made through that weekend.  Well, you made it through that weekend but at thirty-three weeks the doctors were afraid that it was all becoming too much for you and they admitted me to be on bed rest.  We officially hit the thirty-four-week mark (6 weeks early) and it was time for your arrival.  Dr. Ruggieri came into my room about 11pm the first night and explained to me that you probably would not cry or breathe on your own.  He told me about all the people that would be in the operating room and who would be caring for you.  He told me that they would quickly whisk you away and get you to a special area called the NICU.  The NICU is a special area where they gave you some extra time and attention that was needed to give you the best start possible.  

What he didn't tell me is that you would defy the odds!  That from day one you would have your own plan and would do things your own way.  To everyone's surprise, you came out crying and breathing on your own.  That tiny little cry brought tears to my eyes.  That cry was so much more.  It was just one of the many many ways that God reminded us that you are His and that He alone is in control.  It was a reminder of His goodness and the fact that indeed, He has a mighty purpose for your life.  

You were born on a Thursday and that Sunday they moved you from NICU 1 (where the sickest babies are) to NICU 2 (where the babies are making lots of progress and learning to eat and grow without quite as much attention).  When you moved into your private room I posted this own your wall:  

  Jeremiah 1:5    
  Before I made you in your mother’s womb, I chose you.
   Before you were born, I set you apart for a special work.

I had no idea that even as a 3lb 2.2oz tiny little guy that you would take this so seriously.  You have never wasted any time proving that He truly does have a special work for you.  You are always determined (often times determined to be mischevious), do your best, and push harder than anyone I know.  All the while you smile, laugh, love, and give "ugs" to everyone that crosses your path in the process.  Your sweet smile, infectious laugh, and exuberance infect everyone you come in contact with in the very best way.   

You push me to learn more, pray more, work harder, love more, give more, and push through every day.  You make me a better person.  You and your brother have given me a new passion and helped me find a purpose in this stage of my life.  Thank you for pushing me further into my Father's arms as I could not make it through this journey without the wisdom, love, and support that He alone can give.  

I am not sure what I ever did to deserve the privilege of being the mother of an extra special child, but I wouldn't trade it for the world.  I wouldn't give up or change one day of this journey.  I wouldn't change a thing about you and I can't wait to see who you become.  I have no doubt it will be extraordinary.  

As we celebrate four years of you today, my prayer is that you would never forget the sentiment that you so often sing, "it's who I am, it's who I am and I'm loved by You."  He is your Good Good Father and you are so loved by Him.  Despite the unknowns of what may come in your future, I know one thing for sure.  He has very special plans for you and you are loved beyond all measure! What a privilege it is to be a part of the story!

Happy Birthday Brink!  

Quick prayer request

I'm sorry it's been a while.  We've had many many issues with our internet service lately and are now going on week three with no service at all.  I've got plenty to share but it will have to wait until I have wi-fi.  I've already used far more than my fair share of the church's data allowance on our cell phone plan.  Here's a quick update though.

Yesterday I found myself at the pediatrician's office with Brinkley.  Thankfully, our doctor was the one doing weekend duty and we are only dealing with pink eye.  Facebook reminded me that on the same day last year we made a sick visit to her office and promptly were sent to the ER and admitted with possible pneumonia.  Iy probably seems crazy, but I'm so thankful for typical childhood problems.  We've dealt with so many serious things over the last for years (and so many families deal with far more serious things than we have).  With that in mind, I'd like to ask you to pray for Brink and our care team.  We are currently going through a series of lab tests.  The goal is to determine if he has a deficient immune system and if so the specific issues involved.  We are hoping this will give us insight into how to keep him healthy.  He will have more labs this week.  Please pray specifically that they are able to get what they need on the first try and that there will not be complications with the blood draw.  Also please pray for wisdom as his new doctor (#15) as he interprets the results and makes a plan for Brink.

Picture Day Perfection

There is a children's book that Reese loves.  It's called Picture Day Perfection.  Here's the Amazon description of the book: 

It’s picture day, and the boy at the center of this charming picture book wants to make sure his picture is perfect. It seems as though everything’s going wrong for him—he has bedhead, a stained shirt, and a big scowl on his face. But when he goes up for his picture, he thinks about his terrible appearance, and he smiles—because he secretly wants his picture to be the worst ever taken! But just as he smiles, the photo is snapped and his plan is ruined—the photo looks great.


If you follow me on Facebook you have probably seen my posts about Reese's school/group pictures in the past.  I'm pretty certain that the young man in this story is his idol.  It's become a somewhat of a joke to anticipate just how crazy the next picture proofs will be.  Imagine my surprise when his 2nd grade Spring pictures came home last week and this is what I saw: 

There's hope that he'll reclaim his throne as the king of crazy school/group pictures in 3rd-grade!  

CFA, BBQ, and DS

Social media is a cultural phenomenon that often gets a bad rap.  I am well aware of the dangers of bullies, creeps, and just down nasty things that you can encounter on social media.  Many people are leery of putting too much info out there (rightfully so) and some don't think twice about spilling everything.  (Think teenager sharing photos of themselves smoking pot or underage drinking and disclosing the location where such things are happening).  Despite what anyone thinks, nothing and I do mean nothing, that you put on social media is private.  

Needless to say, social media is a powerful thing.  Properly harnessed can be used for a lot of good.  I love the ability to keep up with my college friends that live all over the world.  I love being able to quickly get the word out about needs that arise in our community, church, or circle of friends.  As the parent of a special needs child, social media has been the main way that I have built my support system for this journey.  

What a blessing it has been to connect with families from all over the world who also have loved ones with an extra chromosome.  Though we haven't met most of them face-to-face, we are a family know that we can count on each other for love, advice, and support on our journey.  Not only has social media been a great place to connect, it has also been a great way to spread awareness.  I know that my "friend" base is small but word travels fast on the internet.  

This principal is one that I have experienced in a new and real way this week.  Monday (3/21) was World Down Syndrome Day and many families posted photos and videos of their awesome kiddos rocking extra chromosomes in an attempt to spread awareness that our kids are more alike than different.  We even got in on the action. 

What I never expected was that something totally unrelated to WDSD would become my biggest contribution to bringing awareness.  Brinkley loves Chick-Fil-A and barbecue sauce.  Tuesday night we ate dinner at CFA and he was not going to let a drop of his BBQ sauce go to waste.  I thought it was funny and started recording him.  Who knew lots of people would agree?!?!  As of right now, the video has had more than 5,500 views on Instagram.  I have no idea how it has been circulated so much, but I won't complain.  I have gained many new followers and people have gone back through my other photos and videos liking many of them as well.  People are commenting and thanking me for sharing our journey.  

My prayer is that Brinkley will be an encouragement to others on this journey with us.  We want them to see that there is joy in this journey.  Who could have ever imagined that a little guy and some CFA BBQ sauce could reach so many people?  And just in case anyone from Chick-Fil-A sees this, he'll gladly advertise for you if you'll pay him in nuggets and milkshakes!

In case you missed it, here's the BBQ sauce video: 

Lessons from the baby monitor

5:28 a.m. Sunday is not exactly my preferred call time.  As any parent knows, though, you can never predict or control the time your children decide to wake up.  Normally on a Sunday morning, the boys and I don't need to be up before 8:30 a.m. (not that Reese or I EVER sleep that late).  

Saturday night I put Brinkley to bed without his CPAP machine, so he was not confined to his bed.  That being sad, the tiny little voice coming through the baby monitor jolted me out of bed for fear of what kind of destruction I would find in his bedroom if I didn't attend to him quickly.  Diapers and diaper cream covering the room, dressers and bookshelves emptied, these are surprises that have welcomed me into his room before and ones that I didn't want to find again.  (Need proof, you can follow his shenanigans by looking for #brinkleywashere on Instagram or Facebook.)  

As I pulled my earplugs out and started getting out of the bed, I realized he was signing.  I stopped to listen for a moment.  The tiny little, speech-delayed, voice that can hardly utter a two-word phrase was signing.  The tears began to flow as I heard, "loved by you, who I am, who I am."  In his broken little speech pattern, he was perfectly in rhythm singing Good Good Father.  (You can find the lyrics below.)  

Both of my boys love this song and can belt it out with the artists as we listen in the car. This is not the first time that Brinkley has surprised me with this song.  A week or two ago we parked our car in the Target parking lot, BIG SHOCKER!  (This may have been the second or third trip of the week, I don't even keep track anymore.)  As I opened the door to take him out of his car seat he was singing the same lines, "loved by you, who I am, who I am."  I had to fight hard not to sob standing there in the parking lot.  All I could do was look at him and say, "yes you are and don't ever forget that" as I snuggled him close.  
At that moment, a familiar scripture hit me like a ton of bricks.  Psalm 119: 11 says, "I have hidden Your word in my heart that I might not sin against You."

It's hard as the parent of a young child with intellectual and developmental delays to know if they understand and process the things that you try to teach them.  Some things you can see obvious results, like walking or using utensils, but others aren't so easy.  It is hard to know if they grasp the concepts that you try to convey like love, friendship, kindness, etc.  It adds another layer of difficulty when speech is difficult for them.  They can't articulate back to you what they understood, or didn't.  

No matter the depth of his understanding of the words he loves to sing, one thing is certain, the concepts of Christ's love for him are finding their way into his heart.  There are a lot of things that I can't control in the environment that my children live in.  One thing that I have some control over is what they hear in my car.  These incidents, along with Brinkley singing the radio station jingle, prove to me that the things that they hear in my car (and we spend A LOT of time in the car) make an impact on them.  Putting truth before them constantly provides a way for my boys to hide The Word in their hearts, even when they don't know that's what they are doing.  

I remember sitting at a table in the hospital cafeteria one afternoon while Brinkley was still in the NICU.  My dear friend Mindy had brought her husband to meet us and have lunch with us.  Sean is also a pastor and the parent of a child with Down Syndrome.  At one point during the meal, Bryan asked Sean if he had been able to teach Sid about Christ and if Sid understand.  I don't remember exactly how Sean responded, but I think I know the answer.  Our God is a Good Good Father and he loves my son so much that He gave His son for him.  He loves my son so much that He has chosen him to come to this earth carrying an extra chromosome.  He has brought him through two open heart surgeries and may other medical complications that could have easily taken his life.  He made him exactly the way he wanted him.  Brinkley's genetic makeup isn't a flaw or an accident.  It is part of our Good Good Father's plan and I couldn't be more humbled or in awe of being a part of it.  

It is my prayer that despite what the world may throw at my boys that both of them will have the truth hidden in their hearts that they are loved by our Good Good Father and that is who they are!  

Good Good Father

Oh, I've heard a thousand stories
Of what they think You're like
But I've heard the tender whisper
Of love in the dead of night
And You tell me that You're pleased
And that I'm never alone

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

Oh, and I've seen many searching
For answers far and wide
But I know we're all searching
For answers only You provide
‘Cause You know just what we need
Before we say a word

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

Cause You are perfect in all of Your ways
You are perfect in all of Your ways
You are perfect in all of Your ways to us

You are perfect in all of Your ways
Oh, You are perfect in all of Your ways
You are perfect in all of Your ways to us

Oh, it's love so undeniable
I, I can hardly speak
Peace so unexplainable
I, I can hardly think
As You call me deeper still
As You call me deeper still
As You call me deeper still
Into love, love, love

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am
You're a good good Father