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.  

Report Card Day

Yesterday was report card day.  Report cards are supposed to be a mark of how much a student has learned.  Sometimes those marks make us feel accomplished and sometimes those marks make us feel ashamed.  As a child, I was pushed to be a good student and to show how smart I was by making high grades. I've come to realize that being smart means a lot more than numbers on a report card. 

School was fairly easy for me.  Reading was a skill that I learned early (before kindergarten) and writing came easy.  I could pay attention in class, take notes, and walk away with decent grades with little effort (with the exception of math).  Reese also loves school.  His favorite things about school are science, art, and social studies (as in the study of being social).  Reading has been a struggle for him.  At this point, he doesn't know that he is significantly behind in this skill.  He loves books and enjoys me reading with him.  I am careful about the books that we get and how we read them so that he doesn't get discouraged.  

I have no intention of telling him that he is behind.  I will continue my fight to get to the root of his struggle.  I will continue to read with him and encourage him to find books about things that he loves.  I will continue to be amazed at him.

Today he asked me for $1 from his spending bank for the school bookstore.  On Tuesdays and Thursdays, the school opens the bookstore and all books are $1.  He had a lego book in mind to purchase.  These books are usually a good level for him and he can read them on his own easily.  You can imagine my surprise when this is what he came home with instead: 

He was so proud to show me his purchase.  We enjoy watching the Narnia movies together and I had been considering buying the book set for him.  He opened the book and read the first page to me as soon as we got out of the school parking lot.  It was tough and took him quite a while but he did it.  He asked if he could rewatch the movie to help him understand the names.  I agreed and after homework was finished I helped him start the movie.  

I am so glad that he doesn't know that the numbers and letters on that piece of paper supposedly show how smart he is and somehow magically give him worth (or make him feel worthless).  I know that he is so much more than a number or letter and I will continue to make sure that he knows that as well.  Reading and writing may never be easy for him but so many other things are.  It's my job to help him find those things and nurture those things.  He will always be more than a just a report card.

***I am currently listening to an audio version of the book 8 Great Smarts by Kathy Koch, Phd.  It is great for helping you to discover and understand the ways that your kids are smart and how to nurture those areas.  I encourage you to take a look at the book or listen to interviews with Dr. Koch.  http://www.8greatsmarts.com/

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.

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.