Sweet Memories and A Revelation

Scrolling through Facebook this morning I came across this video that my cousin shared.  

This is a story that I am very familiar with, so I found it odd when I began sobbing as I watched.  This is the community that I grew up in and the high school that I attended.  Radio was an everyday part of my high school life.  He hugged me and would sit with me at lunch.  I often shared my lunch with him and I would bake cookies for him.  We had a routine: 1. hug 2. he'd ask "you bake me cookies?" 3. he'd whisper in my ear, "don't tell nobody, you my girlfriend."  

You were guaranteed to see Radio sitting at his desk near the main office taking up attendance cards.  (Yes, we still used real paper and pencils for things in the 90's.)  He was just a part of the package that was attendance at T L Hanna High School.  I love Radio and consider it a blessing to have had him as a part of my high school experience.  

This morning Radio's story hit me differently.  Yes, I had a bond with Radio and enjoyed the times that I have had with him.  Yes, he was one of the bright parts of a high school experience that I didn't particularly enjoy.  There are many things about that not so great experience that I have been able to look at in hindsight and see God's providential hand.  Things that I couldn't see or even imagine as a 13-17-year-old girl.  Well, one of those things just hit me this morning as a 40-year-old woman.  

Who could have ever thought that God was using that experience with Radio to soften my heart to those with intellectual disabilities?  God was planting a seed in my heart that I wouldn't see unearthed for 20+ years.  Those days that I sat and opened his food packages at the lunch table, the days that I leaned in a little more to be able to understand his broken speech, the days that I gave hugs and cheers for his seemingly minor accomplishments, the days that I was just a friend and treated him like every other kid at that lunch table.  Who knew all of those days were just glimpses into what the rest of my life would look like.  

With the help of an unassuming, radio-loving, intellectually disabled man, God was preparing me for a life of loving and fighting for my own intellectually disabled son and those like him.  Radio was just a small stepping stone in finding a passion and purpose in my life.  It may have come long after I walked the halls of T L Hanna High School, but I found it, am running hard to pursue it, and am forever grateful for the seeds that were planted in my heart!  

Day 4: 5 Days of Brinkley

Year 3 Brinkley learned to walk on his own (without his walker) and started preschool for the first time. We had the privilege of becoming a "miracle family" for Children's Hospital and representing the hospital all over the region. We met some wonderful folks including the Furman Men's Lacrosse team who quickly became his buddies and lead him to love all things Furman. We made our first trip to NYC to see him featured on the screen in Time Square and walk in the NYC Buddy Walk. (The subway and meeting his friend Freddie were his favorite parts.) Brinkley on the shelf made his first appearance.  Dr. Brinkley had his g-tube closed and one other surgery. We added a few more weeks of hospital stay to the count. The doctor appointments began to slow down a bit and therapy kept going strong.

Day 3: 5 Days of Brinkley

Year two came with fewer hospital stays (4-6 weeks), lots of progress in therapy, learning to sit and stand on his own, finally eating baby food, and tons more love and snuggles. He graduated from in-home nursing care and we started using aid services. We still had far more doctor and therapy appointments than I care to count but we spent the majority of our time out of the hospital and had only 2 minor surgeries.

Day 2: 5 Days of Brinkley

Year one included 26 weeks of hospital stay, 2 emergency open heart surgeries, 2 other surgeries, numerous ambulance rides, 2 medical flights, hundreds of doctors appointments (honestly I can't count them all), nearly 100 therapy sessions, more ER visits than I care to count, millions of snuggles & hugs, prayers from all over the world (literally), building an incredible care team, and watching our faith grow. It's not the first year stats that I would have wished for, but it's what the Lord BLESSED us with.

Yes, it was a blessing! We learned the trust the Lord, lean on each other, and to embrace and celebrate every small victory. I learned to see the Lord in the small things and to trust the instincts that He placed inside me. I learned to seek wisdom in ways I never would have otherwise. We built an incredible care team that loves this little guy almost as much as we do. I met some amazing people and have had the privilege to walk alongside them in their journey with their children. I have met wonderful medical professionals whom I have been able to pray with and for and to encourage and love on as they have loved us.

Though it is not what I would have planned or wished for, when we embraced the situation that we were in and asked the Lord to use it, He did! He has been faithful to make this very difficult journey one that is filled with joy. I praise Him for the victories and the lessons learned.

Day 1: 5 Days of Brinkley

Brinkley turns 5 in 5 days so here's to 5 days of Brinkley. Day 1: we welcomed our 3 lb wonder into the world with the help of a team of 10+ people. He was six weeks early due to complications and we had the NICU team ready to help breathe life into a baby they expected to be blue and lifeless. As is his style, he surprised us all and came out loud and proud with no assistance needed. He was quickly whisked away to see cardiology and the team of NICU doctors. I was finally able to see and hold him the next day. He was so tiny! That's half of a cloth diaper covering his entire body.

Sick Kids Strong Moms

This morning I came across a video that I have seen posted several times on Facebook.  This time I actually took the time to stop and watch it and read the accompanying article.  It was so timely for both myself and the friend that had posted it. Take a minute and check it out:

Sick Kids Strong Moms

This is me.  This is so many of the wonderful women that I have met over the last four and a half years.  You may think you know what I deal with on a daily basis and you may think you understand how I feel.  Unless you have walked this journey you have no idea.  Until you've stood before a medical team and made literal life and death decisions about your child and spent weeks and months in the hospital you can't possibly understand the burden that we bear.  Even as a hospital mom or a medically complex mom, we've all traveled different roads.  We may not know the intricacies of each diagnosis but we have an undeniable bond that others will never understand.  

No matter the decisions that we face and the endless doctor visits, hospital stays, surgeries, and medical procedures I would dare say that most of us agree that we have been incredibly blessed.  I know that sounds ludicrous to most people.  How can all of this be a blessing?  First and foremost, look at the incredible miracle that we get to love and hold in our arms each and every day!  

Second, as Christ followers, we get to see God's hand in tangible ways that others may never experience (or pay attention to). God reveals Himself to us in ways that we would not have understood were we in any other situation.  So many times we walk in Abraham's footprints and lay our children down trusting that the Lord is faithful and will do what he has said.  We wait for our ram and we see miracles happen for us and/or in the families around us.  

Third, we have each other!  I wish I had the words to explain to you the incredible blessing that it is to look at another mom and see it.  You don't even have to say a word.  You can see it in her eyes.  She gets you!  She gets it!  Our stories may be different but our hearts are the same.  Her child may be primarily dealing with neurology while I'm dealing with cardiology, but we get it!  I have met some incredible women over the last few years.  They get me, inspire me, and challenge me!  Some of them I've met at the hospital or through other parents.  Many of them I've met at our therapy center.  While our kids are getting their physical, occupational, and speech therapy we get a little therapy of our own.  I look forward to those days each week knowing that, even if for just a short time, I can just be me!  If no other time, for those couple of hours that day someone truly understands and gets me.  I love my support system and look forward to those days all week.  You ladies know who you are and I love you and am blessed and proud to call you friend!

Soapbox: Communication

In the 19th-century and early 20th-century cardboard boxes didn't exist.  Instead, wooden crates were used for shipping goods.  Discarded crates could be found easily in most areas.  These "soapboxes" made great platforms for those who had a message to share. These messages were most often political or religious in nature.  Today's equivalent could be a blog.  

Pardon me while I turn my crate over and step up...

As a high school student, I was a member of the forensics team.  (No, not the CSI-type forensics.  Forensic meaning argumentative or rhetorical.)  I had an incredible coach who made a huge impact on my life.  She was and continues to be one of the most influential people in my life.  Not a day goes by that I don't think about her and use something that she taught me all those years ago.  (Thank you, Gladys Robertson!)  

Ms. Robertson taught me that words have power, a lot of power, and you have to understand how to use them to properly harness that power.  She taught me to love words and research.  (Your words are only as good as the knowledge behind them.)  I never doubted my ability to learn and to communicate effectively with her guidance.  This spurred me on to pursue a degree in communication.  

Maybe it's all the hours and money I spent learning about communication, maybe it's the SJ detail oriented part of me, or most likely a combination of the two but I find communication absolutely vital.   Clear and effective communication is necessary in every aspect of life.  You must communicate to have healthy personal relationships.  If businesses plan to succeed effective communication with employees and customers is crucial.  This is true no matter what industry (the church world is no exception).

My greatest headaches over the last two - three weeks have all stemmed from a lack of communication.  In December our house was broken into and several things were stolen.  I promptly filed all the reports and jumped through all of the hoops that the insurance company asked for to settle the claim.  It was supposed to take 2-3 days for an adjuster to contact me.  After two weeks I called to inquire about why this hadn't happened yet.  Several days later I was contacted.  I had already done everything the adjuster asked about.  Several weeks went by again with no communication and I started contacting them again.  It took several days and calls and emails to several different people to get the adjuster to contact me.  His response, "I have been out of the office."  It's been several more weeks and again no communication.  I am no closer to having this claim settled than I was in December.  And, yes I did pull the "my child is waiting for open heart surgery and I don't need this hanging over me" card.  It did not help.  

In case you are not aware, there is such a thing as an away response on your email.  I get them all them time from other people that say they are away and when to expect a reply or who to contact in the interim.  It is also quite easy to change your voicemail to communicate this information.  Well, Nationwide you have lost this customer.  As soon as this claim is settled we will be dropping your coverage.  We will be dropping our local agent as well due to communication issues.  

In late January, Reese started at a new karate school.  Because of all the wonderful things I had heard in the past about this school I was excited for him to try it out.  We've been there about six weeks now and there has been no consistency with the instructors (a different one a least once a week) and no consistency with the classes.  Last month we showed up for class and the doors were locked and no lights on.  It was a school holiday so I assumed that I missed a memo that they don't have class when there is no school.  Apparently, that isn't the case because they haven't been closed on the holidays since that one.  Last week I drove the 25 minutes (one way) to the karate school both days to find it locked and lights off.  We pay $100 a month for the classes.  They can figure out a way to notify me that there is no class.  Ironically, both times last week I intended to tell them to stop the bank draft because we would not be returning. The company they use for the bank draft won't return my phone calls either.

As if that wasn't frustrating enough, we are still waiting for word about Brinkley's upcoming surgery.  If you have missed that information, his pacemaker is damaged and has to be replaced.  We discovered this in early February but learned that the damage actually occurred in December.  At that time we were given an appointment two weeks out for preliminary tests with surgery to follow later in the week.  Due to Brinkley getting sick the preliminary work was done but the surgery was postponed.  They didn't communicate this to me and I never saw or spoke to a member of the cardiology staff.  After debating if I need to continue to stay in the area of the hospital (3 hours from home) or return to my family I called to find out what the plan was.  At that time I was told the surgery would be postponed two weeks and they would call me to schedule.  The following week we saw our local cardiologist and he didn't know much more than I did so he made a call and put the MUSC doctor on speaker phone.  I was then told surgery would be 6-8 weeks out and they would have a conference about Brinkley later that week.  

On Tuesday of this week, our Greenville doctor called to check in with us.  He made a few calls and called me back later in the day to tell me that the conference didn't happen until Monday and that they needed to clarify something with the surgeon before scheduling.  He was told they would contact me Wednesday or Thursday.  (He is currently out of town.  Imagine that, he told me he would be away and who to contact if I needed something.)   When I hadn't heard anything midday Thursday I started making phone calls to MUSC.  It's Saturday and none of those calls have been returned.  

I am a little more than disappointed with the lack of communication.  At this point my son's tiny heart is not working properly, he is in need of surgery and you can see the effects in his color, oxygen saturations, and his energy level.  If they drag this out until next month we will be pushing the six-month mark since his heart worked properly.  That can not be a good thing.  

Before I step off my crate and return it to the scrap pile let me urge you to communicate.  You can never over communicate!  A simple email or phone call is often the difference between a customer/friend for life and a huge disaster and disappointment.  People deserve to know where they stand (especially if their health or money is involved).  As the service provider, you owe your customers the common courtesy of acknowledging them and your attempts to serve them.  In most cases, they have plenty of other options of providers.  It should be considered an honor that they trusted you enough to choose you.  They are going to be your best advertisement either way.  Good or bad, it's your choice.  Choose wisely!  

Expect the Unexpected

If I have learned anything over the last four years on this journey with Brinkley it's 1) to trust my instincts and 2) expect the unexpected.  

That came in handy today.  Brinkley has been fighting off some type of respiratory crud so I have been checking his oxygen levels regularly (as I typically do during cold and flu season).  Our pulse oximeter no only measures his oxygen levels, it also measures heart rate.  Ideally, Brinkley's oxygen level is somewhere between 98 and 100.  Because of the settings on his pacemaker, his heart rate is usually around 100.  This morning his oxygen was in that ideal range but I noticed that his heart rate was erratic jumping around from the 70's to 130.  

My instincts kicked in and I went through a few steps and contacted his pacemaker specialist in Charleston.  After several calls from various people on her staff I got a call from her main nurse about 12:30.  The nurse said that the cardiologist's office is Greenville was expecting us at 1:00 and told me what they planned to do.  At this point, I knew something was truly wrong.  I told her that I would have to get him from school and couldn't do it by 1:00 but we were on our way.  I soon got a call from Dr. Raunikar, our local cardiologist who was on his way to the airport.  Again, a sign that I was not simply overly concerned.  

After arriving at the office and following the instructions that I was given, we were told that one of the leads of Brinkley's pacemaker is broken.  As a matter of fact, it has been broken since December 9th.  Several more phone calls transpired between various staff and our MUSC doctor and myself and the MUSC doctor.  

The bottom line is that we will be checking into MUSC on Monday, February 20th for open heart surgery number 3 to replace the pacemaker lead and the battery.  There is potential that more may be done but we won't know for sure until some preliminary work is done on the 20th.  Surgery will be later that week.  Please pray for us as we work over the next week to work out all the logistics.  This was definitely not on the radar.  Expect the unexpected.

As you can imagine, this has been a bit overwhelming to say the least.  Earlier in the day I was a mess.  The tears were flowing and the prayers were being lifted.  The Lord has been so faithful to us through each step of Brinkley's journey and I know He isn't finished.  I prayed that I would remember that in spite of the fear that may creep in.  We stopped at a light just a couple of blocks from the doctor's office and the song Overwhelmed by Big Daddy Weave came on.  The tears quickly began to flow again as I heard Brinkley singing along and I listened closely to the words.  It was just the reminder that I needed.   Each time his little voice sang "overwhelmed, overwhelmed by you" I became a little more overwhelmed not by my circumstances, but by His continued faithfulness.  

I'll continue to be overwhelmed and expect the unexpected.  

Stones of Rememberance

In the Old Testament God often instructed people to leave visual reminders when He had done something significant in their lives.  In Joshua 4 he had the Israelites leave stones at the Jordan River.  Verse 6 says, "They will be a sign among you. In the future your children will ask you, ‘What do these rocks mean?’" These stones of remembrance were intended to not only remind them but to also remind those that came after them.  

These days the Lord may not tell us to literally leave stones of remembrance but He does give us visual reminders of His faithfulness.  Today Facebook served as one of those reminders to me.  As I was looking at my memories I found this: 

A flood of emotions came over me as I thought about that day.  As if a complicated pregnancy, early emergency c-section, a complicated prenatal diagnosis, and seven weeks in the NICU weren't enough Brinkley decided to surprise us with the need for emergency open heart surgery at eleven weeks old.  There was so much that happened over the next five weeks that would test my faith and prove to me over and over again just how faithful my Lord really is.  (You can find many of my thoughts about that here on the blog in the December 2012 section.)

It was what I saw that I had posted a few hours earlier that day that brought me to tears. Over the last four years, I have thought about that day many times and have reread these statuses many times but it wasn't until today that I noticed this: 

  

I often listen to James McDonald's teaching on the radio and must have been that morning.  This status was followed by a picture taken at Reese's preschool Christmas program rehearsal and a check-in at the cardiologist's office.  

I am certain that I had no idea how significant this thought would become in my life.  I have heard that thought many times.  Sometimes it is worded a little differently, but the sentiment is always the same.  The tears flowed as I thought of all the ways that Brinkley's unexpected journey has been used so far.  To think of how much my life has changed (for the better) is almost overwhelming.  The faithfulness of the Lord never ceases to amaze me. 

While I may have Facebook memories to serve as stones of remembrance for me, Brinkley has the permanent visible scars.  His trunk may be covered in marks and scars but each one is a story.  A story of the faithfulness of my Lord.  A story of the power of prayer.  A story of strength and determination.  A story that will one day be his to share in his own words.  For the time being, I'll continue to share every chance I have.  I'll continue to walk through each door that is opened to walk with other families through their journey. I'll continue to share the tiny bundle of joy and blessing that I am blessed to have call me momma.  I'll continue to share until the day comes that he asks about his "stones of remembrance" and in turn shares on his own.

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!  

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

Appreciate the Wait

Today was the day.  The rite of passage for all females who have made it to the magic age of adulthood... the yearly exam with the Gynecologist.  It is not the most pleasant of experiences and waiting in the office doesn't make the experience any better.  I arrived 30 minutes early, so I knew I'd be waiting a while.  

As my appointment time inched closer the lady at the desk told me that it should only be a few more minutes.  My appointment time came and went and I was still in the waiting room.  After I'd been there about 45 minutes I was called back to start the process.  You know the drill: specimen, finger-stick, blood pressure, the dreaded scale, and the questionnaire about your life and meds.  By the time I got to a room it was 30 minutes past my appointment time.  It's never pleasant to wait, and waiting in a cold exam room (watching the snow fall through the window) in minimal coverings doesn't add to the experience.  My immediate thoughts were of irritation and then I remembered.  

I remembered the day several years ago when I came into that office for an ultrasound for the very first time.  After the initial scans the tech told us that she needed to step out to bring the doctor in.  My doctor wasn't available so one of her partners came in to explain to us that our baby had no heartbeat.  I had never laid eyes on this woman before, but there was genuine concern and compassion in the way that she handled this tough situation.  She sat in that room and cried with me and listened to me spill my heart.  She never rushed me and made me feel like this was the most important thing she would deal with all day.  I had no doubt that from that point on she was my new doctor.

Dr. Katherine Frederick is one of a kind.  She rearranged her schedule to do the D & C following my miscarriage.  She was incredibly encouraging through the process of trying again.  The second time around she followed me very closely to ease my fears.  When we had the abnormal ultrasound with Brinkley she took so much extra time with us.  She personally called me to talk about my lab work and spent close to an hour on the phone with Bryan and I.  Never once did she ever make me feel like my baby was anything less than perfect despite his diagnosis.  Over and over again she has gone above and beyond for me.  

With that in mind, I thought about the young mom who may be in the room next door getting a tough diagnosis.  I thought about the lady who may be scared to death about an unplanned pregnancy.  I thought about the lady that they were working in because something unexpected happened to her.  I thought about the young girl that may be there for the first time scared to death of what the OBGYN's office is all about. I thought about the day I was rushed out of the office to be admitted for my emergency c-section. 

I thought about how each and every appointment that I have had with Dr. Fredrick has been one that I've walked away from knowing that she cared and gave me the best care that she could.  Knowing that she was giving those patients she same great care that she always gives me made me wrap my exam gown a little tighter and settle in to wait patiently (and thankfully) for my turn.  

2nd Grade Confession

It's the first day of school for Reese today.  2nd grade here we come!  This was our obligatory picture to document the occasion: 

Looks great, right?!  He's happy and we're a wonderful family bopping out the door for a great first day at school.  That is what the majority of the photos you will see look like.  Let's be real though.  This is what our morning actually looked like: 

There was a lot of yelling, rushing, and frustration moving through this house.  At this moment, he was saying something rude and disrespectful to me.  That's pretty typical for mornings and evenings in this house.  Honestly, most mornings feel like a war zone and the enemy we're battling is ADHD and anxiety.  Unfortunately, we sometimes forget that and turn our frustration on each other instead of the problem.  No family is perfect and don't let all the staged perfect photos fool you into thinking that your family is the only one with struggles.  Your struggles may be different, but we all have them.  We all need a little grace to make it through the battles.  

My prayer and intention every day is to make it through the morning with everyone knowing they are loved and feeling that love, not the frustration of the morning's battle.  I pray that we can find the plan or system that will help cut the frustration and tension level in our home.  I pray that my boys would know that above all they have a Heavenly Father that loves them despite their quirks (He gave them those quirks) and despite the fact that I don't always reflect that love very well.  I pray that I would be the mom these boys need and that I would trust the Lord to equip me with what I need to do that and that he would convict my heart when I contribute to the chaos and frustration.  

Here's to praying for a great school year for both boys (Brinkley starts in three weeks) and for the teachers and staff that get the results of our train wrecks every morning.  

Let's get messy

Ministry is messy.  People's lives are messy and when you build relationships with them you often have to walk through their mess.  The mess makes it easy to get jaded and burned out.  We have walked with teens and families through many losses and changes in life.  Many of those experiences have forever changed us and those families.  We often cry and lose sleep over the issues that are facing those we serve.  Sometimes it is hard to see past the hurt of those we serve.  It can also be hard to see past the pity parties and complaints that we are subjected to.  Many times you want to throw your hands up, walk away, and hide.  If you serve in ministry and you haven't felt this way you are either brand new and haven't gotten there yet or you are lying to yourself.  (Yes, I just made that bold statement.  Yes, I wholeheartedly believe that.)

Right now, however, is another season for me.  It's been one of those where the Lord reminds me over and over again of the sweet privilege of being a part of peoples' lives. He's reminding me of the rewards of being faithful to not give up when it gets messy. That is not to say that things are drama free (is ministry ever drama free?), it's just that I'm being open to seeing the blessings in it all.  

Earlier this month I attended an incredible wedding.  As the wife of a former youth pastor, we are often invited to or asked to participate in weddings of former students. Usually, we are close to either the bride or the groom.  One or the other was a part of our ministry and we may not have met the spouse until wedding prep began. 

Snagged from Ashely's Facebook page

 Aaron and Ashley, were different though.  Aaron had been in our ministry since middle school and Ashley joined the group when she was in high school. They met in the youth group, summer beach camp to be exact.  We watched their relationship grow and bloom over the years and were more than thrilled when we got a call from Aaron last summer. He told Bryan that he was planning to propose and wanted to make sure that Bryan would be available to perform the service.  A few days later, their engagement video went viral.  You can watch it here.

Both Aaron and Ashley were very involved in the youth group and we were able to spend a lot of time with them over the years.  I couldn't help but cry as I watched Ashley walk down the aisle.  It felt like my own children were getting married.  There was something extra special about the night.  It was perfectly them.  Some of the tears came from the realization that it is such a privilege to be a part of these kids lives.  

I wish I could adequately express what was going on in my heart and mind as I sat there.  I was so overwhelmed with gratitude for being able to be a part of their lives.  Not only their lives but the lives of their families and of many of the other guests.  We had a youth group reunion outside the reception space.  

This picture represents hours spent in an urgent care office for bones broken at camp, tears over family problems, parents with serious legal issues and jail time, and struggles to finish high school to name a few.  I can't help but cry and smile as I look at that picture because it not only represents those issues I just listed, but it also represents three young men that are serving in ministry positions, youth and children's ministry volunteers, and former ministry leaders.  

Today was another one of those moments.  About three years ago a family walked into our church for the first time.  As we were talking to them we learned that their two youngest boys were foster children.  Over the next months and year we got to know them and their story.  Two years ago I had the privilege of sitting in the courtroom the day a judge made them a forever family.  Adoption and foster care are messy.  We've walked that road ourselves.  An adoption certificate doesn't make it any less messy.  Every day there are struggles as our kids have come from hard places.  Today marked another milestone for their family and another privilege for me.  I wasn't sitting today, but standing on the bank of the lake watching those two boys be baptized. Again, I was in tears thinking about how special the moment was and how lucky I was to be beside them.  

What I've realized over the last few weeks is that ministry is messy, but it is also a huge honor and privilege. Who else gets to be a part of so many pieces of people's lives? Embrace the mess and wade through it!  It's in the mess that you earn the privilege of sharing in the celebration.  

Dream Come True

I must admit, I am a little emotional today.  This is a bit uncommon for me.  Allow me to share with you what I have had the privilege to do today.  

Last week I was asked if we would be willing to participate in Radiothon.  Radiothon is an annual fundraiser for our Children's Hospital that is hosted by several of our local radio stations.  The DJs take time throughout the day to interview families whose lives have been impacted by the hospital.  It's a bit on an understatement to say that it has made an impact on us.  

We were asked to be available during the 8 am hour this morning.  Brinkley and I loaded up early and arrived at the hospital about 7:45 this morning.  I was so blessed to be able to talk with the DJs from three of our local stations.  Brinkley caught the eye of a few of the DJs and one of them tried to get him to "talk" on air.  Several photos of our little guy have shown up on the Facebook and Instagram pages of the stations and DJs.  

One of the female DJs mentioned how lively and joyful he is despite the set backs he has faced and asked a question in regards to that.  I don't remember exactly what she asked, but I quickly responded, "Brinkley is the biggest blessing we never knew to ask for."  

As we left the hospital that statement became real to me in a brand new way.

A little background will help me explain.  In high school I had the incredible fortune of finding myself in Gladys Robertson's public speaking class.  I would dare say that she made a huge impact in my life.  She taught me invaluable skills like research, organizing my thoughts, and confidently presenting information that I am passionate about.  She believed in me and pushed me to always do my best.  This helped shaped my decision to pursue a degree in Communications and fueled a passion in me to use those skills to make a positive impact in my world.  

In college I studied Communications and Sociology.  The skills and understanding that I gained through those studies gave me the desire to be a public communicator.  I didn't know how this would pan out or even if it would.  Many things have come across my path that gave me the opportunity to speak here and there, some job related and some not.  I had not really thought much about this somewhat hidden desire though.  Honestly, at times I had ideas in my head that I would be on a stage speaking to crowds of people on a regular basis as a conference speaker or something of that nature.  I had good intentions of leading people well and teaching them valuable things, but it was selfish.  It was about making a name for me on a big stage.  

As with many things in my life, I have come to realize that the desire in and of itself was not a bad thing.  As a matter of fact, the Lord has opened the door for just that in my life, but it has happened in His timing, His way, and with His focus.  I could have never imagined it to have panned out this way.  Sitting in the booth with those DJs today made me realize that the Lord has given me an incredible platform.  Our journey with Brinkley has given us an understanding that many people will never have.  

I get the privilege of sharing how our lives have been blessed through seemingly terrible circumstances.  I get to tell people how our lives have been forever changed (for the better).  I get to share about the incredible people that have been a part of our journey.  I get to be an encouragement to others who are walking similar journeys.  I get tell others how they are a part of or can become a part of many journeys like ours.   The thing is, none of it is about me.  Everything that I get to share is about others.  It's about Brinkley, our wonderful hospital and the other families treated there, and of course about God's faithfulness to us on this journey.  

Who would have ever thought that being the mom of a medically complex special needs child would turn out to be a dream come true?!