I told y’all Johnny was an artist!

If I turned the last year of my life into a book I think the title would be, The Season of Lancing, because that has been what it has felt like.  A season of God saying you have this giant infected boil inside of you and you don't even really see it, but I am the good physician, so I'm going to hold you down and I am going to grab the scalpel and as gently as I can I am going to cut into this.  And you're going to feel the hurt and you're going to question why a good father would hold you down and cut you but I know that we've got to let this drain out for healing to come.  It's going to hurt like hell and you're going to see this as wounding you but we've got to open this up and let the infection seep out.  If we don't this infection is going to seep into your brain and your heart and your bones.  It will kill you.  

That in a nutshell has been my journey this year.  God revealing and letting my heart be cut open to expose what needed to drain out so we could irrigate and bandage back up.  Been REAL fun over here y'all.  In the process I have found that healing isn't linear.  It ebbs and it flows.  But oh my, has there been healing.  There will always be a scar from this phase in my journey.  A mark on my heart.  Part of my healing has led me to make a lasting mark.  I've needed to look down and see a tangible reminder of this season that I've walked through.  

The wildflowers because wildflowers have always been a symbol of God's control and goodness for me. Standing in the middle of a desert only God can plant, grow and sustain a wildflower.  In the driest season there is growth and beauty to be found if you search.  Plus wildflowers are here today and gone tomorrow.  I need the reminder that life on this side is fleeting.  It gives me the perspective I need to be intentional in the living here.  I can't cling to this life for myself or even for my kids.  So we hold out our days as an offering to the Lord and say do what you will with the days you've given us.  And when we breath our last, we'll no longer be weary foreigners traveling through but we'll be finally home.  Kylie Jo's is the Poppy and Lila's is the wild rose but I'm saving the reason for those flowers for them.

The rose with spots on it because those are actually the freckles on Dustin’s face.  They remind me of the stars in the sky that were perfectly created and dreamed up by God just like my boy. The rose opening up more and more always revealing more beauty but also knowing with the beauty comes the thorn.  And the thorn isn’t bad….the weakness, the hardship is what in its backwards way glorifies God.

Remember because prone to wonder Lord I feel it prone to leave the one I love.  I think of the Israelites a lot as they began their journey to the promised land after walking through the parted sea.  God had delivered them from a life of oppression and He had promised them an abundant land rich with resources.  They witnessed a supernatural moment that should have just ingrained in them a deep everlasting trust in the Lord but they passed by those walls of water and forgot what the Lord had done.  I never want to forget what God has done in my life.  For not a second do I want to pull an Israelite!  I don't want to be walking in the "desert" and complaining about how I'm going to get a drink of water when five minutes ago I witnessed God perform a miracle.  I want to cling to the fact that no matter where we find ourselves, I can trust Him because He is faithful.  He always makes a way when there seems like there is no way at all.  The way He makes may not be the way that we would have chosen and it may not at all be a way that we like but we have to trust that His ways are always better than our own.  Because quite frankly they are!  

The single star because I painted a bunch of those on Dustin's ceiling.  They remind me of what the star leading the wise men to Jesus would have looked like.  The way Dustin gazes on his stars is the way that I want to live my life too.  Fix my eyes upon Jesus and follow Him wherever he asks me to go, stay where I'm sent and give what I've got.  

Let the healing carry on..........

Dustin's One Year Heart Failure Anniversary

One year ago today Jake and I woke the girls up early so we could spend some time together as a family.  I sat all three kids on the couch and I took a picture.  If I close my eyes I can still feel that moment.  I remember not being able to make eye contact with Jake because I knew....I knew he was thinking the exact same thing.  If I saw on his face what I was holding back in my heart I wouldn't be able to keep it together.  This might be the very last picture that we took of all three of our kids.  We might come home with lonely arms and shattered hearts.  We all might have to figure out how to do life on Earth without Dustin.

We kissed the girls good bye.  We got in the car and Jake drove.  I sat in the back trying to not be crushed by the weight of our life.  It was still dark out.  The trees and flowers were all dormant, no signs of life at all.  Only death! We didn't really talk.  We parked.  We checked in.  We walked up to the Cardiac ICU and for 11 days we battled for Dustin's life.

Then we got back in the car and we drove home.  Before that day I didn't know that fear and joy could reside in the same breath, but they can.  We pulled onto my favorite road, Old Annetta, and everything had bloomed.  The trees had big, beautiful, healthy leaves.  There were flowers sprouting in the fields.  Life was everywhere.  We were engulfed by life.

We drove to the hospital there was death...11 days later we drove back home from the hospital and there was life.  I didn't really see it then but lately I can't at all get this out of my mind; this image of death and life that God has placed before me.  It's as if He wants me to know and proclaim that just as He brings back the trees every year....he brought back Dustin.  And through this trial He saved my soul.

One year later I am a new person.  I am not the fragile woman who walked into the hospital.  I've changed.  Our trial has grown my faith and my understanding of who God is.  I'm confident in the words of the Bible and the God that I have grown to respect, and love.  This year has taught me to daily draw near to God and in doing so He has drawn near to us all.

Today I am thankful!  Thankful for a God who brings back the dead to life.  Thankful for the trees that are sprouting leaves, and for Dustin who is very much alive.  Thankful for my soul, it knows exactly where it will be when my heart one day stops beating.  And I'm thankful for the pictures hanging on my walls that are full of memories from this year with all three of my children.

Haven't you Heard, It's Rude to Stare?

I know what the words special needs means to most of you because I used to be you.  When I heard the words special needs I thought of a child who was different and couldn't do what most children could do.  I saw a child who didn't function the way that they should, and for lack of better words....to me, something was wrong with them.  Something was wrong that wasn't fixable.  My heart broke for their parents because this wasn't the plan that they had for their life.  Nobody raises their hand when they are about to make a baby and says, "ME...pick me...I want my child to have special needs."

When I came across a special needs child in life I would avert my eyes because the world had taught me that it's rude to stare.  I got so good at not staring at special needs people that I flat out didn't even see them anymore.  They were these people that were practically invisible to me.  I literally did not see them.

Then we had Dustin and God revealed this entire world to me that I didn't know existed.   It's like my eyes had been closed, and I didn't know it existed because I couldn't see it!  In the deepest parts of me I can't quite grasp the fact that I didn't see and I didn't understand something so huge....but I will be forever grateful that I do now!

Matthew 13: 15-17

"For this people’s heart has grown callous; they hardly hear with their ears, and they have closed their eyes. Otherwise they might see with their eyes, hear with their ears, understand with their hearts, and turn, and I would heal them.  But blessed are your eyes because they see, and your ears because they hear.  For truly I tell you, many prophets and righteous men longed to see what you see but did not see it, and to hear what you hear but did not hear it."

Now I see.  I see what special needs means.  It is differently abled but not in the way that the world thinks.  It's better!  It's a rich, deep, beautiful, hard gift.  And I see it that way because I see God all over it.  These children are not broken.  These children are not wrong.  These children are revealing to us something about who God is.  When I look at Dustin I see Gods character almost more than when I look at anyone else.  I see that God sees perfection in the things that humans see as broken.  That God sees beauty in things that the world sees as ugly.  The way that we define the big things in life like knowledge, joy, love, happiness, health, success....God defines very differently.  Do not look to what is seen!

I realize that just because I see this world doesn't mean that you will.  But I guess I am so thankful for this new world that my eyes have been open to that I genuinely want you to see it too!  I want you to see the special needs people that you pass.  I want you to look at them.  I want you to smile at them.  I want feeling sorry for them (or their parents) to not be your first thought anymore!  I want you to know that they are different then you but that doesn't mean that something's wrong with them.  

I just don't think God messed up!  I really think that the love and joy that reside in Dustin is so much more aligned with what God is after.  I constantly look at Dustin and think that He knows God in a way that I haven't even been able to scratch the surface of!  Dustin points me to God.  He points me to the cross.  He shows me how to celebrate even the dumbest of things.  God used this little guy to open my eyes and my heart.  In a stunning twist of events I see God so differently.  His love is so much deeper than I ever grasped.  His ways are so confusing but they're crazy better!  

"Yet you, LORD, are our Father. We are the clay, you are the potter; we are all the work of your hand." Isaiah 64:8

You will be praised You will be praised
With angels and saints we sing worthy are You Lord

And it's why I sing
Your praise will ever be on my lips, ever be on my lips
Your praise will ever be on my lips, ever be on my lips
Your praise will ever be on my lips, ever be on my lips
Your praise will ever be on my lips, ever be on my lip

https://www.youtube.com/watch?v=I9AarM9w5lU

I Will Remember

Y'all, the Israelite's stood in front of the Red Sea and they were able to stare and gasp as the waters rose up and parted.  Can we just all stop for a minute.  Don't just skim past that because you've heard it a million times.  Close your eyes and picture this: THE ISRAELITE'S STOOD IN FRONT OF THE RED SEA AND THEY WATCHED IT PART!.....................................................I have to think that most of them were freaking out inside when they were taking those first steps on the dry ground where the sea had literally just been.  They walked beside walls of water on their left and their right.  I mean when I close my eyes and picture this, when I put myself there, I just get all kinds of feelings.  Where there was no WAY God MADE a way.

After experiencing this water park on steroids the Israelite's must have been just crazy in awe of Gods mighty power and Gods profound love for them.  And yet as you go on to read the rest of Exodus you see how quickly they forgot what God had done for them.  He had delivered them from a life of oppression and He had promised them an abundant land rich with resources.  Ummm and this just in...he parted a SEA FOR THEM, like a large body of water just opened up....I mean I just can't even!  Water parting is a miracle people.  That doesn't just happen.  They witnessed a supernatural moment that should have just ingrained in them a deep everlasting trust in the Lord but they passed by those H2O walls and forgot what the Lord had done.  

The word remember is a word that I cling to these days.  I never want to forget what God has done in our life.  For not a second do I want to pull an Israelite!  I don't want to be walking in the "desert" and complaining about how I'm going to get a drink of water when five minutes ago I witnessed God perform a miracle.  I want to remember what God has done in our life.  I want to cling to the fact that no matter where we find ourselves, I can trust Him because He is faithful.  He always makes a way when there seems like there is no way at all.  The way He makes may not be the way that we would have chosen and it may not at all be a way that we like but we have to trust that His ways are always better than our own.  Because quite frankly they are!

The thing that I really want to drench myself in lately is that God is never changing.  The God of the Old Testament is the same exact God of the New Testament and He is also the same exact God today.  Miracles aren't just a thing of the bible.  Miracles exist today but we try to explain them away or we keep them to ourselves because people might think we're crazy!

When we were in the hospital fighting for Dustin's heart to not fail something super crazy happened.  After a horrifically terrifying first day Jake went home to be with the girls, Dustin was sound asleep, and I more or less passed out on the "bed" knowing that I had several hours before the nurses would be back in for vitals.  After just drifting off to sleep the lights flashed on and the door slammed open.  In that moment my heart sank because I knew this was it.  Dustin's heart was failing and I was going to have to watch my baby boy die.  As I jumped out of bed something wasn't right.  A man was in the room alone and he was oddly walking towards Dustin's bed speaking broken Spanish.  In my half awake state I couldn't put together what was going on but I knew something wasn't right so I rushed to Dustin's side and forced the man out of the room.  Come to find out he was the father of a child on the floor and the stress of being a parent with a child in the hospital had caused him to drink a tad too much.  (The nurses had NEVER heard of something like this happening!)

After my adrenaline slowed down I just sat there on the bed in the dark feeling completely alone and attacked by the unseen world.  I was exhausted in a way that I'd never experienced and I desperately needed sleep but I was terrified because I didn't feel like we were safe even in the "safety" of our hospital room.  Then all of the sudden in the quiet of the night I heard voices....a jumble of voices all at once talking.  I couldn't make out what the voices were saying but I knew without a shadow of a doubt that God was giving me a soundbite of what He was hearing in heaven.  As quickly as the voices came they disappeared.  I sat there in awe and disbelief.  People everywhere were lifting Dustin and our family up and I heard it.  We were covered in prayer by hundreds of people.  I was NOT alone at all.   In that moment I knew that Satan wouldn't be stealing my sleep by using fear.  Full of peace I went to bed and I might add that I slept great that night!  This I will remember!

Months down the road I was all alone in the living room with Dustin.  I was giving him his first of 6 medicines for the night and he choked.  For what seemed like an eternity he tried to gasp for a breath and he just couldn't get one.  I watched his body turn a scary shade of blue and begin to go limp.  When I was about ready to begin giving rescue breaths I saw air finally make its way into his lungs.  As I stood there with my partially limp baby who was slowly regaining his color I broke down.  Then the most insane thing happened.  Our living room filled up with God's presence.  Words cannot begin to describe it but the room felt brighter, warmer, and full; like love was just bursting at the seams.  Think the Grinch Stole Christmas heart growing scene times a billion.  I knew that God was there in a very real way like I don't usually feel Him and I knew in that moment that God breathed that breath into Dustin's lungs.

That night as I laid in bed I felt God pushing me to go into Dustin's room and lay my hands on him and pray out loud.  That's not something that I do so I was kinda like, "thats crazy" and I rolled over, but the feeling wouldn't go away.  So I went into his dark room, laid my hands on his heart and just prayed out loud for him.  I prayed for him to be healed in Jesus name.  I prayed that God would use his testimony.  I prayed that our response to his health would be pleasing and glorifying.  I prayed that Satan would have no place to plant fear in our hearts.  I prayed for miracles!  Then I walked downstairs knowing that this was a a night I needed to remember.


Not long after we found ourselves back at Cooks hospital so that Dustin could get his second set of ear tubes and an ABR(Auditory Brain Response) test since he would already be sedated.  When the audiologist walked out to the waiting room she knelt down and she said, "Something interesting happened with his results."  Jake and I looked at each other and took a deep breath not at all knowing what to expect.  We were hoping his hearing would improve a little now that the fluid was drained out BUT the test showed that his hearing had improved a lot.  Actually so much that in one ear his hearing loss is so moderate that he quite frankly might not even really need a hearing aide.  The audiologist didn't say the word miracle but she was dumbfounded.  This doesn't happen.  We asked and were told multiple times over the last few months that his hearing would never get better than the initial ABR test and yet it did.  While the doctors can't think of an explanation I can........God did this.  I laid hands on Dustin and prayed for his hearing to be healed and God said yes!  The best part is that when Kylie Jo found out the results she bounced up and down and celebrated......GOD HEALED HALF HIS HEAD....GOD HEALED HALF HIS HEAD!  That morning she had prayed expectantly for God to heal his hearing and He did!  This I will Remember

Today I find myself having a bad day.  A really bad day actually.  The kind of day where I had to syringe 12 of the 20 oz that Dustin ate.  The kind of day where I am so tired of waiting that I want to march into Cooks and demand that they do the tests on Dustin's digestive organs now.  The kind of day where physical therapy seemed never ending and unchanging in it's results.  The kind of day where tests at the audiologists office took hours which meant getting stuck in rush hour traffic in a crazy hot car while Dustin screamed the entire way home.  The kind of day where I found out that another person I love who is sick with cancer needs a miracle that can only come from God.  The kind of day where I look at my prayer request paper and my heart physically aches because it seems like everyone is hurting through really big things right now.  The kind of day where I feel so completely alone......and then I stop and remember what God has done.  I remember to turn around and look back at the seas that He has parted.

I don't know what you are walking through today.  Life has taught me lately that most of us are walking through hard things.  I just want you to know that God knows.  He sees you.  He wants you to come to him.  He wants you to ask for miracles.  He wants you to trust that He has the power to answer.  Even when you want to believe so badly but you have unbelief....he is okay with that.  I have prayed a million times Lord I believe but help my unbelief.  Nothing is impossible.  Where there is no way, God makes a way!  Trust that His ways are better!

Dustin Health Update

Since we have been home from the hospital we have had some really rough days....the fear of Dustin's heart failing him is always lurking around every corner.  Ever cough, every bottle that he struggles to finish, every medicine that he chokes on, every gassy day, every bead of sweat, every nap that seems like it might have been just a little too long.........it all is second guessed.  Is this a big deal?  Is this teething?  Is this the normal baby stuff?  Or is this the thing that I need to follow my mom instinct on.  

I'm told this over analyzation of every detail is normal after going through what we have gone through.  It is getting better.  I have been turning to what God's word says and just drowning myself in sermons and worship music.  Just because I am a believer doesn't mean that I've got this all figured out though.  Just so you know, there isn't this status that you hit as a Christian where you get to walk with a swagger because you are more full of faith then everyone else.  Really I think all believers have days that we struggle really hard.  I mean that is the point after all right?  We can't do this on our own.  We weren't created to do this on our own.  That's the point of the cross.  We need a savior.  God is a relational God.  He wants you to turn to Him.  He doesn't just want you to memorize facts about Him or muster up enough will power to conquer things on your own, but he wants you to actually know Him and turn to Him and trust Him.  Growing in that takes time.  Maturing in your faith is a process and honestly I'm seeing in my own life that it's a much slower process then I would like.  

These past few weeks I have been deeply convicted and I feel like I need to confess some things to my people.  You see I tricked myself into thinking that my walk with the Lord was pretty amazingly strong.....and then the storm hit and I realized all the ways that I had been lying to myself.  Like I tricked myself into thinking that I dug into my bible way more then I actually do.  I tricked myself into thinking that my prayer life was legit when in reality it was shallow at best.  I believed that Jesus died on the cross with everything inside of me but I was so busy with the three kid thing that somewhere along the way God sort of lost air time in my life.  The 7:30 TV numbness was so well deserved after a long day of poring myself out for my family...surely God didn't mind if I filled myself up with The Bachelor instead of turning to Him.  If I'm totally honest I've clocked in the Sunday church time, the bible studies, and the "good" deeds but that's not what He's after.  He doesn't get glorified through my "good" deeds,  half hearted submission and my memorization of bible verses.  He's after me.  He's after my whole entire heart.  And I've tricked myself into thinking that I have this off the charts kind of relationship with God when I don't.  In one of my darkest moments....I didn't trust that He could heal Dustin's heart.... and I saw exactly how lacking my relationship is with God.

Yesterday as we were waiting to get on the elevator for Dustin's follow up cardiologist appointment a little old lady was standing next to us with a bible in her hand.  She is that old lady that you want to sit on a wrap around front porch with and sip lemonade with all afternoon as she just tells you stories from her life.  We got on the elevator and she just looked at us and asked us how we were doing.....I didn't say fine because I knew she was the kind of person who wasn't looking for the easy answer.  I wanted to spill my soul to her but I just looked at her with the fear and the doubt and the pain and said we are doing okay.  I saw in her eyes that she knew what I meant.  Then the elevator door opened and we got off and she continued to ride up and all I could do was think how thankful I was that we didn't have to ride up to the floor alone.  He's in all the details......if we only open our eyes to see Him there.

As we were waiting in the waiting room I just kept exhaling.....and Dustin just kept cracking up at a flower picture on the wall.  I mean the kid was laughing so much that the ladies in the office were poking their heads out of the sign in window laughing with us.  

We eventually walked back to our room and did all of the tests and then waited....and the Dr. came in with really good news.  His heart looks smaller.  His EKG results look better.  His heart sounds great.  His BMP #'s are awesome.  We do not even need to think about the word transplant right now....maybe we never do.  God is healing Dustin's heart.  My mom said something today that stuck with me.....sometimes we want to give all the credit to the Dr.s or the medicine.  There is no doubt that God may be using them to heal Dustin but God created the minds that made that medicine and he created the minds that have taken care of Dustin.  We left yesterday full of unexpected joy.  We were more ready for bad news than we were ready for such good news.  I am just overcome with thankfulness.  Even when I was full of doubt and fear God stepped in anyway.  He stepped into that room and reminded us that He created that heart and that he can heal it too!  

"Praise the LORD!  For he has heard my cry for mercy.  The LORD is my strength and shield.  I trust him with all my heart." Psalm 28:6-7

Dustin Update and Prayer Requests

As I sit here at the computer I feel like I'm supposed to share our story but I feel overwhelmed at what to share and where to start.  Where do you even start this kind of story?

On Easter Sunday I held a baby boy who was getting over a virus and was a little tired and not very hungry.  I held a baby who had recently been diagnosed with three chromosome abnormalities...one of which explained his hearing loss and delays. (1p36 deletion syndrome)

On Monday I sat in Dustin's pediatrician office and talked about my concerns with his eating and asked if she ever had any concerns about his heart because heart problems are part of the syndrome that he was diagnosed with.  She ordered an X-ray at Cooks hospital and so we went there as quickly as we could.

On Tuesday our pediatrician called to tell me that the x-ray showed that Dustin's heart was large and that we were scheduled to see a Cardiologist at 2:00 that afternoon.  We were just supposed to get an Echo but after the Echo we went to do an EKG and after that we sat in the Dr.s office.  When the cardiologist explained what the words dilated cardiomyopathy could mean we were blindsided,devastated, and speechless.

On Wednesday morning our girls played with the brother that they have come to adore and then we sat them on the couch for a picture.  In my head it was the last picture of the three of them.  It was the last picture of Dustin at home.  It took everything inside of me to hold it together.  At 8:00 in the morning we checked into Cook Childrens Cardiac ICU and watched as our boy was hooked up to machines, sedated for a PIC line (line that went from his leg to his heart), and filled with strong medicines.

For the next 10 days we rode on a roller coaster of highs and lows.  We had Dr.s who were encouraging and Dr.s who sucked the joy and hope right out of the room.  We had countless friends walk into our room unannounced to encourage us and pray over our son.  We had nurses pray over our son.  We had worship music blaring.  We had text messages reminding us of what Gods word says and what God's character is.  We had grandparents running the home.  We had family come in to help unannounced.  We cried out to God constantly.  We had moments of great strength and moments that we just clung to each other and sobbed.

On Saturday we were given the all clear to come home.  That doesn't mean that this fight is over though.  After 10 days of intense medicines flooding Dustin's system we had hoped to have an echo that showed a heart whose function has greatly increased.  What we find instead is a heart that maybe has a tiny bit better function.  We are praying that God will use the 6 oral medicines that he is on twice a day to begin to miraculously improve the squeeze and relax of his heart muscle and decrease it's size.  We are so thankful for the improvements that we see externally.  Dustin was eating better when we left the hospital.  He went in with a bmp of 700 and left with one of 90 (100 or less is normal).  The entire visit Dustin's heart rate, oxygen levels, and blood pressure remained stable.  He has sinus rhythm which means that his heart beat is normal.  He has begun to make a ton of noises in the last few days....he now knows how to complain with baby talk.  He actively played with his first toy in the hospital.....like he grabbed it and meant to shake it back and forth and then put it in his mouth.  He has been laughing and smiling more than ever before.  When we took him out of his car seat when we got home he just laughed and laughed.  He was so happy to be home!

Right now the heart inside Dustin is the best heart for him.  On April 20th we will go see his cardiologist to see how Dustin is doing and we will begin talking about getting testing done in either Dallas or Houston to see if Dustin is a candidate for a transplant in the future if his heart becomes too weak to do it's job.  We are praying that his genetic syndrome will not keep his name off of the list but we are also praying that he will never need a transplant.  Because quite honestly the idea of someones worst day in their life just possibly giving us the best day of ours is just too weighty to think about.   We are praying for a miracle.  We are praying for healing of our boys heart.  It's not too late for God to step in and do his thing!

Today has been our first entire day home.  It has been a roller coaster.  Dustin's eating has not been as good as it was in the hospital.  He seems like he is constipated which could be from adding formula to his milk, could be from being a baby, or it could be from his heart beginning to fail again.....no matter how many times I say over and over in my head Mark 5 vs 36, "Don't be afraid; just believe" or a million other verses that are running through my head I am just terrified.  I just want to take the last two weeks of the Weber book and rip them out.  I don't want this to be part of our story.  I do not feel like I am strong enough for all of this.  I just want to Dustin to have 1P36 deletion syndrome without the heart problem part.  I just want to go to hearing aid appointments and therapy sessions.

Please pray for a miracle
Please pray for peace
Please pray for no more eating problems
Please pray for strength
Please pray for sleep
Please pray that we can trust God
Please just continue to keep us in your prayers

And thank you to each of you for wrapping your arms around us and loving us so well.  Every text, every hug, every prayer, every tear, every word of encouragement, every worship song sent, ever gift, every bible verse sent....they have mattered.  They have helped keep us going when we felt that we couldn't take another step!

 

Dustin's Genetic Test Results

We all have days that have rocked the very foundations of our life.  Every year that date on the calendar creeps up and we're reminded of how deeply our life changed.  January 27th now is a marker day for our family.  It's a day where quite honestly our world turned upside down for a moment, the wind was knocked right out of our lungs, and we just sat there gasping for air!  It's the day that we walked into a old, brown, building clinging to hope even if we were pushing back fear.  Then a few hours later we silently walked out broken and mourning the death of the plans that we had for our life.    

On January 27th we found out that most likely Dustin has something called CHARGE Syndrome.  A few days ago two vials of his blood were pulled from his sweet little hand and sent to a lab to help confirm that this is indeed what he has.  We won't get the results for quite awhile but after researching CHARGE I am pretty confident that the geneticist is right.  

There is just no way to prepare for this kind of news.  It took a few days to process and during the storm my heart and mind were all over the map.  I questioned if something that I had done while I was pregnant could have caused this.  I thought about all the things Dustin might never do.  I pictured life with people pointing, staring and feeling awkward around our guy.  I processed how my own life was going to be filled with therapy appointments, Dr. visits, and working countless hours with him at home to progress and how I might have to let some of my own dreams like fostering kids go.  I looked at other little boys running around outside throwing footballs and cried.  I googled.  I you-tubed.  I held him while all I could see was a Syndrome.  I thanked God that Dustin didn't have some of the more severe CHARGE symptoms.  I mourned for the potential loss of being empty-nesters.  I got angry at moms complaining about trivial things that their completely healthy babies were walking through.  I cried from the deepest parts of my soul onto my moms shoulder.  I hurt for my husband in a way that I can't begin to lay words on.   

A lot went on in my heart and mind during my processing days but doubting Gods goodness was not one of them.  Nothing about my faith in God wavered.  God was not caught off guard by Dustin's diagnosis.  This was not a mistake.  This was not an accident.  God knew that Jake and I would be the perfect parents for our little man.  He knew that Kylie Jo and Lila would be the perfect big sisters too.  He counted our family worthy for this journey. 

As I look out over the terrain of my life I see how God has gone ahead and prepared our family for this journey because this is hard stuff and He deeply loves us.  It is NOT an accident that in the past two years we have become close to three families who have children with special needs.  They have wrapped their arms and hearts around us during this time in ways that others just couldn't.  It's not an accident that since Dustin's birth one health concern has been revealed and tackled at a time so that we weren't bogged down by it all at once.  It's not an accident that there has been so much waiting because it was in that waiting where I have found unexplainable peace.  It's no accident that I was a teacher and though I feel that I was never adequately trained to have special needs children in my class, I have sat in plenty of ARD meetings and watched parents advocate for their children.  My boys 504 plan is going to be legit!  It's not an accident that God sent us Christie who is a complete and utter joy and blessing to have under our roof.  God has been so tender and gentle with our hearts during this processing phase.

I've learned a lot in the past few months.  Through Dustin, God has flung open this entire new door that our family gets to enter.  We get VIP front row seats to view sides of God's love and faithfulness that others don't get access to.  The world will look at our boy and they will see a syndrome.  They will put limitations on what he will be able to do.  They will point, avert eyes, and laugh.  The world will label him.  The world will put him in this nice tidy special needs box.  They world will look at Jake and I and feel sorry for us.  All I see when I look at Him is Love.  Dustin is a perfect gift from God.  God will use Dustin's story to bring Glory to his name.  He uses all things for good.  Even when we don't understand His plans for our life, they are ALWAYS better than our own.  

I'm going to try to tackle something as best as I can here: following Jesus does not guarantee that you're going to be healthy.  Following Jesus is not going to make you wealthy.  Following Jesus does not mean that only good things will come knocking at your door.  The message of the Gospel of Christ is not that, in following Him, everything goes right, but that He is enough, no matter what happens.  That's the message of the Gospel, not that everything's going to be okay.  Bad things happen.  Tough things happen.  Life is super messy!  This is not about what Jesus can get you, it's just about Jesus.  He is enough!  He is always enough!

So we are just pressing and leaning into Him.  We are at peace and deeply in love with our little man.  I know pity will be the gut feeling that you have for us as you read this because I used to be you.  For me, for Jake, for our girls, please fight that feeling.  We are doing okay!  God is doing big big things over here in our house and it is because of Dustin being exactly who He is.  

We do have some prayer requests:

On March 3rd we will go see an ophthalmologist (Eye Dr.) to see if he has colobomas in his eyes which cause vision loss.  We know that he can see but he is very sensitive to light and has a hard time tracking fast moving things.  Please pray for his eyes and that his vision is restored to the best vision EVER!

On March 4th a team of therapists will be coming to our house to figure out where to begin.  He will need speech therapy, and probably occupational and physical therapy.  Right now he is almost 8 months old and he is not rolling, sitting on his own, and refuses to lift up on tummy time.  He also does not grab for toys and such.  Please pray that his muscles will begin to get stronger, that his tummy time will become enjoyable, and that God will reign over the therapists hands.  

The date is not set but he will be having an MRI scan of his brain to see if there is damage,  We would ask that you pray fervently for good news here.  We ask that you pray if there is damage that God would work a miracle.  God is in the business of miracles.  

Satan is always lurking where God is doing mighty things so please pray that Satan would find no ways to attack our minds and hearts!  

No need to re-invent the wheel so I will attach a link explaining CHARGE syndrome for anyone who would like to know more about it.   http://www.chargesyndrome.org/about-charge.asp