A Letter To My Dad in Heaven on Father's Day

 

Dad,
Happy Father's Day!  You have now been gone for 9 months.  There isn't a day that goes by that I don't think about you.  How I wouldn't give to have one more conversation with you.  I will always cherish the very last one we had.  Today is Father's Day and even though you are not here for me to call or send a card, I hope you know how proud I am of you.  I always knew you were a good man!  You were always my hero!  You taught us to not give up, work hard at EVERYTHING regardless of how good we were, and to show EVERYONE respect.  I always looked up to you.  I wanted nothing more than to be the athlete that you were.  You showed me how to have a drive to be the best but never take the full credit.  We recently received your Lake View Athletic Hall of Fame Induction.  It was definitely a tough night for all of us.  Like I mentioned before, I always knew you were a great man, but after listening to others talk about you and the dedication and respect you had for others, I couldn't help but me more proud of you.  Dad, I hope people talk that highly of me after I leave this earth.  Such an honor to listen to all the great things people had to say.  I know you probably heard all of it in Heaven, but it was so honoring.  You deserved that induction and I wish you could have been there to receive it!

I think one of the hardest things about you being gone is wrestling with the "it's not fair" thought that keeps rolling around in my brain.  It's not fair for my kids to not have their Da, or Mom to not have you there with her, or even Michael and I.  I know this makes me really selfish but I wish so badly that you were still here with us.  The kids have pictures of you in their rooms and they talk about you often.  They listen to some of the music that you loved.  Caden likes his Asleep at the Wheel, Ethan enjoys the Beatles, and well Maddison still loves her Disney music you gave her.  I found several discs that we had made for you years ago and brought those back home to the kids.  It's kind of funny when the kids are playing music in the basement and all the sudden we hear some old Alabama or Dwight Yoakam.  Fairly sure that's not something you hear much of up here in the north!  That's just a small way the kids can keep you close, and enjoy your love for music.  Oh, and they wear their SMU blue and red very proudly!  As selfish as I am for wanting you here, I know it would have been very selfish to not let you be free from all the suffering you were enduring.  You fought so hard for so many years with your disease, you deserved so many more years of happiness.  I know you're watching your grand kids from above, but they are some amazing little people!  I know you would be proud!

I've realized in the last 9 months I've changed some.   I can't remember a time in my life, where no matter how bad the situation I knew things would workout and be okay.  Even the day we almost lost Ethan and the long wait for his new heart, there was never a doubt in my mind that things wouldn't work out.  Lots of that has to do with the faith you instilled in us and the other the drive of strong will that I gained from you.  God has done lots of miracles in our lives and even though we've been in some rough situations there has always been a good outcome.  Maybe not what we wanted but one we could manage with faith and prayer.  When you became sick and went in the hospital I knew you would pull through.  There was no doubt in my mind that you would conquer this and be back home in no time.  Even to the day you passed I never once thought this was the end.  You leaving this earth was not something I was willing to accept.  Even when I watched you take your last breath, I just felt that you were going to sit right up and everything would be okay.  This is what has been the hardest for me these past 9 months.  I feel that a little part of me was taken away and a reality has set in, that is painful.  I've found myself less sure of outcomes, not that I ever have control of the future but definitely more uncertainty.  With each passing day, I fear what the next outcome will be, because I don't want to feel this pain ever again.  Everything seems so much more sensitive now.


This is the first Father's Day I did not buy you a card.  Not to lie, it was hard walking through the card section, and yes I cried.  Once again I think "it's not fair".  Dad, I know you are watching over us and I know Heaven is beautiful and you are loving it there.  Thank you for all the wonderful memories you gave us, I will always cherish those!  We miss you dearly down here!

Love you,
Candace

TRUST

As usual I'm a tad bit late getting this blog out, but I spend all my time with my kiddos so that's my excuse!  So as we have started the new year I've decided to reflect a little on this past year.  We had lots of first and new learning challenges.  Maddison turned 1 and took off running in every possible way.  Growth, learning, and really running!  Ethan was potty trained and for his reward got a trip to Sea World.  We also began to learn all the ups and downs of having a transplant kid.  We learned about germs, germs, and more germs!  Ethan also celebrated his 1 year Heart Birthday!!!  Caden started kindergarten and seems to really enjoy it!  He also started riding the bus to and from school, which was difficult for me at first.  It just shows that he's growing up and I'm not so sure I'm ready for that.  To add to our hectic schedule with the kiddos we had, gymnastics, tee ball, and soccer!  As for Perry and I, well we just stay busy with the kids!  We've been able to get out more
                                                                 and meet some wonderful new friends!  Things are starting to feel more like "Home" again!

Now to 2014!  I usually start the new year off with several resolutions.  Always, promising that this will be the year I complete them.  Unfortunately, I usually end the year disappointed in myself for not keeping those.  I read a blog my cousin suggested about choosing one word to work on all year, so I'm going to embark on that journey in 2014.  My one little word is TRUST!  At first I struggled with what word to use, but one Sunday during church it hit me and I knew what God wanted me to work on.  I think one of my biggest down falls is that I don't always trust God to take care of things.  I want to use my human hands and have control.  Unfortunately, we cannot control what happens in our lives, because it's all apart of God's plan.  I worry constantly every day about what is going to happen with my family in the next several months.  I learned first hand back when Ethan got so sick that our plans don't always work with God's big picture.  Lots of times I worry about the upcoming years, how long until we are back in the hospital with heart issues or what if I lose one of my sweet kiddos.  I want to have those memories of watching them graduate, go to college, get married, have my grand babies, but am I guaranteed that will happen?  No!  However, I do have the guarantee that God does have a plan and he is in control.  But why does that seem so hard for me?  This past month at church our pastor has been talking about Knowing God's Will.  How coincidental, right?  The crazy thing is some of what has been preached at church also goes along with my daily devotions this month from Jesus Calling on Trust.  Hmm... think God is trying to tell me something!  Anyways, one of the things that I've had a hard time trying to handle is, just because God has a plan and we trust in him and do everything right, doesn't mean the outcome is going to be what we want.  Again, it's all about God's plan!  In 2013 I saw lots of wonderful things but I also witnessed some very hard emotional things.  I watched a couple of dear friends lose their sweet babies before they had a chance to take their first real breathe.  I saw divorce, cancer, horrible accidents, loved ones lost.  These things happened to those people that had done nothing but trust in God and live their lives according to his Word.  How can that happen?  One of the difficult things about being part of the Heart Families is that you start to learn other peoples stories.  Every Heart Child has a different path and different outcome.  As you start these bonds with other parents you see how many small things could go wrong.  Sometimes these things result in death or hospitalizations.  We pray for those families and hurt with them because that could be one of our kiddos.  Then I get into protective mother mode and try my best to make sure something like that doesn't happen to one of my kiddos.  Unfortunately, once again I'm reminded that I can't do that!  And then I hear, "TRUST ME, by relinquishing control into MY hands.  Let go, and recognize that I am God."

So as we being 2014 I'm going to TRUST!  Not going to lie but this has not been easy so far and probably won't be but I'm going to pray and read the Word to TRUST.










Let be and be still, and know (recognize and understand) that I am God.  I will be exalted among the nations!  I will be exalted in the earth! - Psalm 46:10

For we walk by faith, not by sight. - 2 Corinthians 5:7


When I am afraid, I will trust in you.  In God, whose word I praise, in God I trust; I will not be afraid.  What can mortal man do to me? - Psalm 56:3-4

THANKFUL

As we celebrate the month of November for us also comes another new meaning to being THANKFUL!. On Saturday, November 16th we celebrated Ethan's 1 Year Heart Birthday!  It's hard to believe that we've finally reached this 1 year milestone.  In the transplant world, the first year is usually the hardest and that tends to be the year you see rejection.  Fortunately, Ethan had a great year with no rejection and no big hiccups!  This past year has been lots of adjustments but it's all been worth it.  We are THANKFUL!  To celebrate Ethan's milestone we had a Heart Party that was perfect!  With close family and friends there to celebrate it couldn't have been any better!  After the party we released some green balloons and one red balloon to our sweet donor angel in heaven!  Ethan tells people about his heart party and how he has a new heart!  It's so precious to listen to him and then to see the reaction on others faces when they are unaware of his story.  His preschool class had a heart party for him too.  They even made a book that was called "We are Thankful for Ethan", then each classmate wrote why they were thankful for him.  It was precious!  Just another reason we are so THANKFUL for the school he's in and his teachers!

Now to back up a few months,
we had Caden and Maddison's cardiology appointment in September.  At this point we were checking Caden's heart size to make sure it wasn't getting to large.  If you have not been following all three of my kids were born with Complete AV Heart Block.  Caden doesn't have a pacemaker yet, but will someday.  After his appointment in September the doctors have moved his appointments from 6 months to every year unless we see symptoms that his heart can't keep up with his body.  We are so THANKFUL for the good news!  As we know the day will come, the longer we can chug along the better!  Maddison had a pacemaker put in at 6 1/2 months and she also has Long QT syndrome.  We are watching Maddison closely because of the heart failure that Ethan had.  The results we got in September showed that her heart was still going strong!  She will go back in April and if all looks good then her appointments will move to yearly too! 
Another reason we are THANKFUL!!!

As we celebrate Thanksgiving today we are also celebrating another yearly marker in the Hanes home. On November 28th, 2012 we brought Ethan home from an 8 month hospital stay with a new heart!  It was just like bringing a newborn home all over again.  Ethan had never seen our new home.  The last home he remembered was our home in Las Vegas.  The ride home that evening after his long stay is something I will never forget.  Ethan's eyes wide open looking at everything.  Caden was telling him about all the things we were seeing.  When we got home Caden took Ethan's shoes off for him and then gave him the tour of the house!  We had spaghetti, green beans, and garlic bread, which was one of Ethan's favorite meals.  The most amazing thing was how well Ethan just slipped right in and adjusted like he'd been here for months.  We were finally home as a family of 5! Again, another thing I'm truly THANKFUL for!  Hearing the little giggles of 3 kiddos
                                                                 under one roof is such a blessing!  I'm THANKFUL!                                                            
I thank God daily for the blessings he has given us! Our lives are nothing like what I had imagined they would be 11 years ago when Perry and I began our journey as two.  We still face difficult roads but I'm always THANKFUL!  Caden had a Thanksgiving show at his school and then a party we attended.  On the "I'm Thankful for" Turkey, Caden said he was thankful for "My Ethan"!  I'm THANKFUL!! Whether it's the month of November or the month of July I'm THANKFUL!
                                                                                      For we do not know what lies ahead but
                                                                         I will always give Him THANKS!!                                 
Always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ. - Ephesians 5:20

Give thanks to the Lord, for he is good; his love endures forever. - Psalm 118:1

Rejoice evermore.  Pray without ceasing.  In every thing give thanks: for this is the will of God in Christ Jesus concerning you.  -1 Thessalonians 5:16-18

Celebrating at Sea World

This past month we reached some pretty big goals in the Hanes house.  First of all Ethan celebrated his 6 month heart birthday!  Making it to the 6 month mark without big complications is another small sigh of relief.  I asked after the transplant when we would feel like we could breathe again and was told at the one year mark.  So 6 months is a small sigh but we are that much closer.  Ethan did give us a little scare back at the beginning of May.  Some of his lab numbers were rising and we weren't exactly sure why.  With his labs they watch many things.  A few of the things they watch closely are to see if his other organs are "happy".  One of the risks of transplant is the possibility of having other organs fail due to the toxicity of some of the drugs Ethan is on.  In this particular situation Ethan's liver numbers were high.  The doctors did not seem alarmed, however there was some concern.  With that concern comes the talk of it could be this, this or possibly rejection.  As a parent of a heart transplant kid that is one of the worst words you could possible hear coming from a doctor.  When you hear that word your heart just stops and it's hard to breathe.  Unfortunately, that will always be a word in the conversations we have with Ethan's doctors.  Luckily, we were able to determine that the liver numbers were rising probably due to one of the medicines he was taking.  We were able to confirm that his heart was strong and not rejecting after and echo and his 6 month heart cath.  Such a relief! 

The second celebration, which is what made the Sea World trip, was that Ethan is now potty trained!!!  Since our situation over the past year has been a little crazy it made this task somewhat difficult.  Ethan was on the verge of being ready to start potty training right before he got sick.  We were waiting for Maddison's arrival and then were going to take the next step to potty train Ethan.  So much for our planning!!  Since Ethan was in the hospital so long it was just easier to leave him in diapers then try to potty train him on the Berlin.  Then once we got home, he was just more comfortable in diapers and really didn't care much about going to the big boy potty.  So finally, in April I decided to bite the bullet and give it a shot.  We made the potty chart, got all his underwear out, and started talking about the big boy potty.  Ethan had very little interest.  We even read the potty book and bought M&M's for bribery.  Finally one night when Perry wasn't home I let Ethan run around with no diaper after his bath.  My hands were tied up with getting Maddison ready for bed and I hear Ethan say "oh no" and start crying.  Well, he had gone poo poo on the living room rug.  There was a little more to this wonderful scene but I'll spare you the details.  This really hurt Ethan's ego and the next morning he refused to wear a diaper.  He did have a few accidents and occasionally doesn't get to the potty in time but WOW, was not expecting things to be this simple.  Any ways, Ethan's reward for filling up the potty chart was getting to go to Sea World.


On Memorial weekend we packed the car and headed down south.  We dropped Maddison off with my parents, since her patients would have not lasted at Sea World, and took the boys down to San Antonio.  A few of our concerns with going to Sea World was of course germs, which is an everyday worry for us.  Once you start thinking of germs it's sickening to realize how disgusting public places really are.  Our other concerns were the sun and how hot it might be.  A few of the medicines Ethan is on cause him to be sensitive to the sun, so we have to be extra cautious about him being outside.  God knew we needed a much deserving vacation and special time for our family because it was overcast in the 70's and raining the day we went.  Which also helped scatter the people around and so we were able to keep some distance from the huge crowds.  The boys had a great time and we were all exhausted after the day.  Of course Ethan's favorite things were the ice cream he ate and getting to see the Elmo show.  Ethan was also allowed onstage and took a picture with Elmo and Cookie Monster.  Caden is not a fan of costumes so he wanted nothing to do with taking a picture.  Ethan just grinned and gave Elmo a huge hug!  If the people in the costumes only knew how much that meant to a little boy who has gone through so much!

Tomorrow Ethan will have his 7 month heart cath.  These are always long days but if all goes well he will get the month of July off from caths!!!  He will have one doctor appointment and then he is clear until the end of August.  We could not be more thankful for the gift Ethan has received and how well his health has been.  We constantly are thinking of our donor family and how they lost their sweet angle almost 7 months ago.  God is good!  How can you not believe that when you see Ethan, Caden, or Maddison walking around?  These kids are living proof that God is with us all the time!

"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."
-Isaiah 41:13

Reliving the Moments

Have you ever had one of those events in your life that you can recall every minute of the day?  And, feel like you can relive it as if it were yesterday?  The past week has been one of those moments for me.  I can remember the exact hours and minutes when things got so scary for Ethan.  I remember feeling like someone knocked the breathe out of me and yet when I remember those moments I still feel like I can't breathe.  I remember praying continually asking God, "why?  Lord please wake me up from this nightmare".  I'm so thankful we are in a much better place this year at this time but it's still so sensitive to think about what was happening last year at this time.  I think at some point you put yourself in survival mode and protect yourself from only seeing what is inside the box and not outside.  Now that the dust has settled looking at what was outside that box, scares me to death!

Here is the timeline as to the events that unraveled this time last year.

Ethan on the airplane on his way to Dallas.

March 28th, 2012 - Ethan was transported to Children's Medical in Dallas from Nevada.  Perry rode with him and I stayed back with Caden and my Mom getting things together to fly out the next day.

March 29th, 2012 - We flew out from Nevada early that morning, and yes we missed our first flight out.  I'll mark that one down for being pregnant.  Once we got to Dallas we started having meetings with the transplant doctors about getting Ethan evaluated for the transplant list.  I remember the doctors saying his heart was "impressive", which is not a word you want to hear from your doctor.  The whole time we listened to the transplant spill I kept thinking, these people are crazy my son does not need a new heart.  I remember sitting in that conference room feeling like I couldn't breathe, then I would catch my breathe only to feel like it was knocked out of me again.  That night I stayed in a hotel with my parents.  Before I went to bed that night I prayed really hard that God could make this all go away.  I remember getting angry with him for letting this happen to my little boy.

March 30th, 2012 - Ethan went in around 8am for a PICC line, which is a basic 30 minute procedure.  The anesthesiologist was discussing the risks of the anesthesia but felt like he had a good concoction.  I think at this point we felt like it's no big deal, Ethan will do great we are not worried.   Perry and I along with my parents headed down to the cafeteria to grab breakfast.  Around 8:40am we headed back up to Ethan's room to wait for him.  When we walked into the CICU there were people running frantically all around.  Then we were approached and asked to head to the conference room because something had happened.  I felt like my legs weighed a million pounds and I couldn't move.  The doctors came in and said that the PICC line had been placed and when they went to move Ethan from the operating table to his bed he coded.  He had been out for 2 minutes and they were able to revive him but were unsure if there would be any brain damage.  I think at this point we were in shock, I felt like I was going to be sick.  Those are not words you ever want to hear from a doctor.  When we got to see Ethan he was connected to so many wires and IV's.  The ECMO machine was sitting in the corner, uncovered and ready to go if needed.  That would be the next step if his heart stopped again.  At this point Ethan was moved to status 1A, and the talks began about trying to put him on the Berlin Heart (LVAD). 

The first night he was sedated

March 31st-April 2nd, 2012 - These days were long and exhausting.  Each day the goals for Ethan were to keep him asleep but not so much his heart rate would drop but not enough to let him wake up.  His heart was way to weak to support any sort of activity if he was awake. This was a little bit of a struggle since he metabolized the meds so quickly, but we had some great nurses who made sure he stayed asleep. Each morning Perry and I would get there for rounds at 7:30am to discuss possible infections and when they felt comfortable putting in the LVAD.  Then we would have to leave because if Ethan heard us or felt us touch him he would try to wake up.  Finally on the April 2nd the doctors decided that April 3rd would be the day to get him set up on the Berlin.

His Berlin

April 3rd, 2012 - So on this day last year, Ethan went back around 7:30 that morning.  I remember watching them wheel "Big Blue" down the hall to the operating room ahead of us.  This was going to be a long procedure even if things went well.  We had lots of family and friends there to help give us support.  My stomach was in knots all day long.  I felt confident that God would bring Ethan out of the surgery with success, he had already brought him back once that had to mean something, right?  A little after lunch that afternoon they put the hospital under Code Black, which means take shelter bad weather.  We spent almost an hour in a closed in room as tornadoes were going through North Texas.  Once we were able to get out we began watching the news to see where all the tornadoes were headed not even thinking of how it might effect our lives.  Around 3pm the receptionist came out and said that our surgeon would be ready to talk with us in about 15 minutes.  So as we are headed to the conference room the reporter on the TV says "I'm in Forney and there is a tornado that is taking out the high school!"  We froze!  Our oldest son Caden was in Forney with some friends.  Are you serious!!!  I have a son in a huge operation and now one in a tornado!  The thought did cross my mind that I might lose both my boys in the same day. but once again God calmed my fears!  Here again I felt like I couldn't move or breathe.  So while we are waiting for the surgeon, we are frantically calling to check on Caden.  God once again put his protection over us.  Ethan's procedure went very smoothly and they were going to try and wake him up the next day, and Caden was safe in Forney.

Easter Sunday

As I reflect on the events of last year I'm so thankful we serve a loving and forgiving God.  I fought him and was angry with him and yet he forgave me and helped me get through some of the most horrific events I've ever been through.  Ethan is sitting hear in my lap as I'm writing this and that is one of God's miracles.  I will always remember today and the events that changed our lives, but most of all I will thank God every day for the 2nd chance we got with Ethan.  Even when I want to pull my hair out because I get the 3 year old attitude, which has happened a lot today I still find a way to hug him and tell him how much I love him!

The boys giving Maddison sugars!

Understanding

So we have now passed the 6 month mark for Ethan being in the hospital.  This has seemed like the longest 6 months of my life.  Never in my wildest dreams would I have thought it would take this long for Ethan to get his special heart.  Through all of this I've continued to have one consistent battle, which is very normal for these circumstances, but yet it's still a battle.  That battle is UNDERSTANDING!  So many times I catch myself asking, "why has it been 6 months and Ethan still doesn't have his new heart".  Why was our time in Nevada so short?  Why is it that my precious kids have congenital heart block and will need pacemakers? Those questions are one's that go through my head on a daily basis.  Lots of times I even pray, God I don't understand.  But he then reassures me not to lean on my own understanding but his.  He has the ultimate plan and I need to rely on him.  Is it fair, no, but I know he has prepared me to handle this and someday I'll look back and understand.

As silly as it may sound, I have struggled with moving from Nevada more than I did when we left here.  Yes, Texas is where our family and friends were but while we were out there I made some really great friends.  I loved the weather, the parks, and the farmers market.  I've often questioned, why would God lead us out there for such a short time.  We knew it was only going to be 3-5 years but why was it just 9 months.  Well, I can now look back and somewhat understand.  When Perry and I made the decision to move out there it was going to give me the opportunity to stay home with the kids and not have to work.  God obviously knew what he was doing because the only way we've been able to manage with Ethan in the hospital, is for me to not have to work. Yes, I do run myself completely ragged but it's for my kids.  I will do whatever it takes to make sure my 3 kiddos have as much normal as possible.

Another simple understanding.  God put us here at Children's because he knew it would be a long journey for us.  The people here are some of the best.  Doctors, nurses, surgeons, child life specialists, the list goes on.  We've been so blessed to have the medical knowledge available here for Ethan.  But it's not just all about Ethan.  Everyone here has taken great care of Caden, Maddison and all our family.  It's not just about Ethan's medical condition but as a family we have to get through this emotional roller coaster.  The support we've received has helped us get through the roughest days.  For example, our child life specialist has allowed us to use the playroom on Wednesday evenings so the boys can have some time to play together.  That's not only therapeutic for Ethan but also for Caden.  They really miss each other.

Does it make sense why my kiddos have this medical condition?  No, but if we weren't constantly watching their heart then Maddison's other heart condition might have gone unnoticed.  Maddison was diagnosed with Long QT syndrome.  Her heart was taking too long to recover between beats which could cause her heart to add an extra beat, which then causes a bad arrhythmia.  We would have never of known if we weren't watching her for congenital heart block.  Now, she has her pacemaker and is on a beta blocker to keep her heart from adding extra beats.  Again, it's a God thing. 

So you may ask, how do you continue to be so strong?  Well, there's a couple of things.  My God is an amazing and wonderful God.  He will take care of us.  He has blessed us with so many things already.  Just spend 30 minutes with Ethan running the halls, and you can see one of his biggest blessings.   One of the many versus I look to is Proverbs 3:5-6, "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."  Second, I have no other choice but to be strong.  My kiddos need to know that everything is going to be okay even in the toughest days, we are going to get through this.  Another verse that I found the other day that I have now added to my daily reminders is Psalm 13:5, "But I trust in your unfailing love; my heart rejoices in your salvation."

Yes, this has been a long journey that I hope ends soon with a happy ending but I will wait for that special heart if it gives me the opportunity to watch Ethan go through school, get married, and have kids.  So I ask myself why am I going through this?  God is preparing me for something, maybe this is my ministry to help other families deal with this type of situation.  Maybe it was to minster to others who have been experienced this with us.  I don't know but I will someday see.  

Olympian

Ethan and his gold medal the Drs gave him

Within the past two months Caden and Ethan have started playing Mario Olympics in the playroom. At first I thought this would be another one of toys where they both have about a 2 minute attention span and then on to something else.  Well I was wrong.  This game seems to be the most desired toy to play.  Ethan's favorite events are the hurdles, long jump and triple jump.  He has now incorporated these events into his daily walks around the hospital halls.  He usually does the triple jump and hurdles with just a little leg lift and a "ump".  It's the long jump where we get the arm workout and the nurses trying to keep up with us with "big blue", the Berlin pump.  We had the opportunity to watch a little of the Olympics with Ethan.  He was disappointed that he didn't see any long or triple jump.  As we watched some of the most amazing athletes compete in these games, I began to think about Ethan.  These athletes train for months and even years to accomplish their goal of a gold medal.  As we watch these games we are in awe of their talent.  How much sweat and pain have they gone through to train, all for a gold medal.  What a journey to experience.

Mario and the Gold Medal

Ethan's Beads of Courage

Even though Ethan did not participate in the London Olympics to me he is  an Olympian.  He's now been on the Berlin for almost 5 months.  He has been through quite a bit for just being 2.  His daily routine usually consist of blood draws or as he calls it "pokes".  He then has to have a dressing change which can hurt depending on how they need to clean his cannula sites.  Sometimes they have to dig around the sites to clean and sometimes all they have to do is wash it.  Ethan does all of this just with Tylenol, no morphine.  Each week he has "picture" which is an echo to check the function of the right side of his heart as well as looking at the blood clot that formed around his cannula back in June.  For 3 hours each day he has water pumped into his stomach from the NG tube.  At night he's hooked up again receiving Pediasure or as Ethan calls it "feeds".  All of this and we are also trying to push food down him.  He's the bravest little boy I know.  He talks about home, and wants to know when he can go.  Ethan hasn't stepped a foot outside and felt the wind or the sun since March 20th.  He may not have a gold medal but he has 10 full strands of beads that hang in his room.  Each bead represents something he's had to go through.  I look at those beads and I hurt for Ethan but I have to stay strong for him.  I'm so proud of my little boy.  To me he stands above all with his medals of courage.

Caden and his superhero powers!

I also feel that my two other children are also apart of this Olympic team. Caden has been through so much and not quite understanding everything going on.  At night after his prayers he'll tell me how he misses Ethan and wants him to come home.  I just keep telling him soon.  And Maddison, what a rock star!  She's had to basically live in the hospital since she was born.  Every day I'm up here I drag her along.  She is so easy going and happy no matter if we are at the hospital or home.  God truly blessed me when he gave me that baby girl that could handle the craziness of our daily life.

Maddison playing in the playroom

All this to say, I am truly amazed by the talent of those that represented their countries in the Olympics.  But, I do believe that my kiddos are all Olympians in their own way.  God has given them strength and calmness in the craziest of storms.  He has given all 3 a unique heart that he touches daily.

Decorating cookies together.