Better Together

A strange and unusual result happened with Blaze being sick most of last week. I can now play the Avengers game on the X-Box with him. For this mom, who did not grow up playing video games (although her older brother occasionally put her name for the high score on arcades across town), this was quite an accomplishment.

Blaze enjoys playing, but tires on certain parts of it. He can't read yet, so isn't sure sometimes of his mission or what is supposed to happen next. His thumb isn't quick enough to hit the "X" button rapidly enough to get the desired results. That's when I began to help.

This process happened gradually, and with some reluctance on my part. I don't want to learn to play an X-Box game, I have other things to do! But my child's coughing and begging pleas for help, overcame my hesitance.

I must say I've learned a lot. Not just with the game, but by watching Blaze. He's a quick learner, has a bit of an impatient streak (that I can totally relate to, unfortunately) and he's an amazing teacher. If I tell him I don't understand, he demonstrates what to do with the controller, then gives me a chance to try it. He explains it to the best of his ability. I had no idea my son was a natural teacher until this week. He likes to try new ways of doing things, and we've both learned a lot as a result. He does narratives and sincerely likes to show off his skills. "See? That worked! I told you it could work!" is a phrase I just heard. I've always known he was funny, but it comes out in a different way while he's playing the game through various commentaries.

I also learned my little boy is growing up. He's a fast learner and his adapting his skills. He is physically growing taller, but he's maturing, too. I can see the reasoning skills developing, and while it makes me a bit sad and yearn for the baby days, I'm so proud of the kid he's growing into.

His prayers this week have been adapting, as well. He's been thanking God for the little things, like peanuts and thanking Him for being able to crush up the shells to asking God to keep our dog from being lonely while we're gone.

Our relationship has grown. When I'm asked to help out with the game, I realize I can stop what I'm doing for a few minutes to help him out. "Sure, I'll be your partner," I recently responded. "Oh, Mom, you're my best friend" was his answer. I'm going to completely overlook the fact he often switches best friends and just soak it up.

We're learning together. We are both still learning this game and have yet to actually make it past the third level. While we're improving on it, we're "defeated" every time, much to our frustration and disappointment. We lament that fact together. Even in that, it's been funny to watch.

I think this week has been a beautiful insight into our need for others. I am so thankful for our family and friends who have been on this journey with us, those who are there when I call out for help. We are so very grateful for the many times you have come in beside us to uplift and encourage us. Thank you! We are so blessed to have you in our lives. We, as a family, have been growing and learning a lot, we're still struggling in areas. Please continue to pray for our family and the journey we are on together. Again, we say thanks...
   
"Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! Again, if two lie together, they keep warm, but how can one keep warm alone? And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken." Ecclesiastes 4:9-12

Oh, and if anyone out there wants to give us some tips on how to defeat that level, Blaze and I would love to hear them! : )

Being Thankful in the (Germ) Storm

We are in the midst of a battle against germs. Two separate infections are wreaking havoc on our little guy and we are doing our best to not get them ourselves and to help him overcome them. Have you ever tried to explain to a four year old why he shouldn't throw his beloved stuffed animal (the one he's goobed on all night long) in your face? Or what contagious means? Why even though he does have pink eye and it's itchy, he shouldn't rub his eyes? It's been a little challenging in our household. Sleep has been non-existent or interrupted for three straight nights. It tends to make a momma a little cranky.

However, this is Thanksgiving week, and we have much to be grateful for. Even in such a time as this, we can have gratitude in our hearts.

I'm so grateful for Blaze, even as he's germing up the place...he's here. He's alive. His heart is strong, even with just two chambers. I'm thankful for the toys as I disinfect them, it means he's feeling well enough to play. I'm glad beyond words that he's a good medicine taker now, and that our trip to the ER in the middle of the night had no tears or fussing in it (despite x-rays to check for pneumonia.) I'll also glad I'm thrilled he doesn't have pneumonia.

Tim has a job that he loves and feels called to work. This past week he helped a missionary in Africa connect to his wireless account. Amazing! Tim has been feeling better, too, and that has been such an incredible blessing.

I have a job that I love, and a fantastic group of co-workers. I've never worked in a place so drama-free...at least when I'm in the office, training's always an adventure! I have the opportunity to pour into people whose job is to serve others. I've also been able to write some about Blaze and our journey. The first of those articles was published last week! I'm praying someone finds comfort in our experiences.

We have such a loving and terrific family, amazing friends and church family. We are blessed.

We have so much to be thankful for, beyond Lysol wipes and Puffs! God remains good and faithful, and we will continue to praise Him! In everything give thanks, for this is the will of God in Christ Jesus concerning you. I Thessalonians 5:18

The Tumble

Blaze has been taking gymnastics lessons through the day care. A bus comes to his preschool and they learn gymnastic moves in the bus. Blaze enjoys the lessons and occasionally demonstrates some moves, but tonight I saw a tumble that took my breath away.

Blaze was walking with his hands in his coat pockets, tripped, and fell (face first) onto the concrete curb, but continued to roll onto the grass and then somehow ended up on his feet. His chin was scraped up, he bled a bit, bruised his face and was in pain. I ached for our boy. He refused a band-aid, he has a fear of them, and even though he takes aspirin, the bleeding was not too bad, thankfully! But despite the fall, he landed on his feet.

I had something similar happen when we were at Children's for his second surgery. I came out of our room with a food tray, turned to shut the door, turned again and took the longest stumble of my life. I had the tray in my hands, at one point the tray touched the ground, but I kept going. I didn't stop until the tray had landed on the correct cart and I was sprawled across the tray. I had to peel some of the trash off of my shirt before I turned around. Somehow I stayed upright. I slowly turned around and was mortified to see a large cardiology team staring at me with their mouths open. One slowly said, "I thought for sure you had bit it." I walked away in total embarrassment. Some quick thinking nurse moved the wheelchair that I had tripped over, before I got back to the room-just in case! I think back on that time and laugh out loud at the memory. What was mortifying before is now a memory that brings a smile.

Life tends to do that to us...there are times when we stumble and fall. How amazing when we can land on our feet and continue on. Proverbs 3:23 "Then you will walk on your way securely, and your foot will not stumble." We all fall down, hopefully we get up, adjust and try again! So thankful that God's mercies are new every morning and He extends grace for the day.

Blaze and his cousin will be participating in an "Olympics" on Saturday. It's not a competition, but a demonstration of what they've been learning. So thankful for my strong, healthy boy, who doesn't let a "little thing" like 1/2 a heart slow him down. Excited to see his accomplishments, and praying he always continues to land on his feet.

Cardiology Appointment

There's something about a doctor's appointment that either allows a child to shine...or causes him to be the screaming, melting kid that causes others to gasp. We've been through many phases of this, sometimes even in the same appointment! Our previous cardiology appointment was an amazing example of the latter. Our four-year-old got his weight measured, stood proudly to measure his height, did not hestiate to have his arm "hugged" by the blood pressure cuff (although he hestiated to lay down to do so), but took convincing to have his pulse-ox measured. He eventually cooperated and received a book/cd "treasure" as a reward.

And then it happened. We walked into the examining room and wanted to take his shirt off, he screamed when I lifted it over his head. It wasn't a good sign of things to come. When she wheeled the EKG into the room he became an absolute madman. We stuck the stickers on each other, the technician and I. We demonstrated how the alligator clips clamp onto the tag on the sticker and would absolutely not attach to him directly. She even left and came back a couple of times.  And even though he did NOT try to kick her and SPIT on her as he has done to others in the past in his rage, he was an absolute terror...or was he?  Was he a terror or was he in terror? That's the thing to all this. As a parent who has been with him his entire life, we've been beside him through surgeries, recoveries,  heart caths, a feeding tube, drainage tubes, PICC lines, countless IVs, external heart defibrillators and really awful shots. I couldn't tell if he was just throwing a fit or if he was traumatized by what was going on. It seems so silly that after everything he's gone through that STICKERS would put him over the edge. In all honesty though, the kid HATES bandaids. He will only have a bandaid on his body if he is bleeding quite a bit. He is a strong fighter, just like we always prayed for him to be. But, oh, how I wished he would cooperate. There were bribes, tears (his and almost mine), explanations...we'd prepared him ahead of time for this. He totally refused. We got close once and he screamed, tried to eat his shirt and hid behind me. What do you do at a time like that? I know what I wanted to do. I wanted to force him to have the EKG. My need to know, to absolutely be sure that things were going okay with his heart, overweighed my desire for him to not have the test. The technician and cardiologist made the call. He (again) did not have to have the EKG.

I was so disappointed and discouraged. I'll be the first to admit, I have some issues with doctors and cardiologists. I don't feel comfortable in not knowing how his heart is doing.

Here's what I saw, though. I saw a strong kid, one that was not weak or even had a hint of illness. I saw a child with pink cheeks from his battle, but pink all the same, which is something that wouldn't have happened in the past. I saw a kid who felt good enough to take on the adults around him, and in the end was persuasive enough to get his way. Doesn't sound like a heart baby. He's definitely come a long way, and I am so grateful!

Blaze is not scheduled to have another cardiology appoint with this cardiology unit until April, his last one was this past March. At that time they are hoping he will be mature enough to have an EKG & echo without sedation. I do realize that every cardiologist has their own style of handling things. I like this doctor, he's a good guy. I feel comfortable with him. Our cardiologist in Springfield always had Blaze do an EKG & echo every visit. I wasn't sure if that was because there was always another surgery coming up or since Blaze is done with his planned surgeries if they would be more lax with them. So I asked that cardiology office. If they were still working with us, Blaze would have both tests done every six or nine months.

So...we're seeking another opinion. There is a cardiologist from Cardinal Glennon hospital who comes to our area every month. We've left message with the scheduler and haven't heard back so far. This doctor, though, is one that a friend's child goes to and we feel comfortable with this decision. It's been hard, we've always dealt with Children's Hospital, and in the past year or so we've come to the conclusion that it's okay to switch to CG. There are so many emotions involved with this decision, we'll see what happens with it all. A lot is still in the air for us and for Mr. Blaze's care. We're continuing to trust God's plan for Blaze and believing He has the best in store.

Please continue to pray for us. We are so blessed to have you in our lives!

Just one more cast...

My dad, Loren Fox, was a bi-vocational pastor who loved to fish. Fishing was his escape from the world, and gave him peace. If it was a Saturday between March 1st and October 31st, there was a good chance we were at Bennett Spring State Park.

As a child I would endure the 100 mile trip there and back. It was easier after I could read, they would just buy a new Archie comic book...a digest, typically...and I would be good to go. I became the queen of "how much farther is it?" and that, too, died off when I figured out certain landmarkers. At the park I was a "Junior Naturalist" at least 5 times. There wasn't a nature trail in the area we hadn't walked, a nature center display that my mom and I hadn't covered or a hatchery fish that went hungry with us around.

There came a point in every trip where I became restless. I would be ready to move on to the next thing or ready to eat or just ready to be home. My mom would send me out to talk to Dad, in order to find out how much longer he would be. The answer was almost always, "one more cast." Dad loved to "roll cast" as he would flyfish for rainbow trout. The only guarantee that Dad would actually stop fishing was when the whistle blew. I can't tell you how many thousands of casts took place after that phrase was said. I'm sure he had the intention of stopping...but it was hard to quit. A lunker might be waiting at that next cast, and when you're in a place you love, doing what you love...well, it's hard to stop.

There are days where I would rather just throw my hands up in the air and say, "enough's enough." I make it a goal to not say "it's just not", but there are times when things seem just so hopeless. Feelings are so deceitful. Faith is what keeps you saying, "Lord, I don't understand what is going on, but I trust you." Just like my dad, who was hopeful that the next cast would reward him with the fish he desired, we have to keep holding on to hope. Don't let the world (or a child) distract you from giving God the attention he deserves. He is faithful. Keep trusting and believing, despite the circumstances you find yourself in. The help you need is waiting there...just one more cast can make all the difference.

Peace

Blaze has a cardiology appointment. It's his first check up since his seizure this spring. I have such a peace going into the appointment tomorrow. We've been blessed beyond measure. God has a plan and a purpose for Blaze, I have no reason to doubt that. So, I will continue to cling to peace and pray for that future.
I would ask, though, that you join us in prayer over Blaze cardiology care. We've been taking him to a heart clinic in Columbia and we are feeling lead to get a second opinion. Things get complicated with insurance and there aren't many choices in our area. We may need to take him to St. Louis for check ups, which gets tricky! I am thankful such quality care is not too far away. We've even considered taking him back to his former cardiologist, which is a longer trip than to St. Louis! We'll see. It's good to have options. We just want what's best for Blaze.
Blaze has been making me laugh at his evening prayers. When he goes to bed he's been delaying bed time just as long as he can by repeating, "God, please help me to be strong. I know you want me to eat my vegetables, but God, I don't like vegetables. Your word tells us to eat them, but I just hate them, especially brocolli. Please keep me healthy and strong anyway. In your heavenly name, I'm sorry I don't like them, Amen."
Never a dull moment!
So thankful for my strong, funny boy. Thanks for your continued prayers!
(Please pray, too, for our house to sell. Thank you!)
Joy

"Normal"

Sometimes it's the "normal" kid stuff that gets me. Things like head lice can really shake me up. Ear infections, hair cuts...and oh my goodness, potty training...that took forever! Things that every child has to go through, but somehow we wish our child could be exempted from. He's had 3 heart surgeries, shouldn't that be enough? But, no, it's not an exemption for the rest of life and the trials therein.

For the first 3 years of Blaze's life, we kept him at home. His grown up cousin, Melissa, lived with us and watched him. After his last surgery we decided to go ahead and put him in daycare. He's in preschool classes now. Along with that came a whole new set of challenges. He became sick more frequently, he's gotten head lice twice, he hears things we try to shield him from and he has outgrown his favorite teacher's class. Already he has been heartbroken for a teacher...and he's learned what frustrates this new one and tries to use it to his advantage. He's sounding out words and learning to write his letters. All "normal" kid stuff.

And in the midst of the chaos, I'm grateful. So thankful that he's healthy enough for all of this. So pleased he's made friends and he's learning his way. So excited to see how very strong he is.

There's been pain in the process. We're learning together. Some things have been harder than others, but what a blessing it's been.

Blaze is to the point now that people don't automatically suspect he's ever been ill. That's a fantastic place to be. It's hard sometimes, though. We mommies want to bubble wrap our kids sometimes and this little man just will not be bubble wrapped! I'm thankful for that.

There are times where I am just shocked by my child's strong will, and determined nature. My husband will remind me that we prayed for him to be strong, even before he was born. We needed a kid determined to make it and willing to fight, and that's definitely what we have.

We're adjusting to "normal." It really is a miracle to be at this point. So grateful for this opportunity and what we've been given.

What's normal to you?

So grateful to our extraordinary God for even the "ordinaries".

You just never know

A little girl named Addison Scott went to be with the Lord tonight. She was born with HLHS, the same condition Blaze has. Addi had the Fontan, her 3rd surgery, in June. For some reason she went into heart failure, had a heart transplant the end of September and now she's gone. Every day is a gift. Somehow we get in our little bubbles and busy-ness and we forget. Then a little life like Addi's reminds us to make little moments count.

And tonight, a little guy named Preston got a call that the heart that he has been waiting on has arrived. His life looked very grim and suddenly he has a new chance, another hope. While his donor's family grieves their loss, Preston and his family have another chance. Praying for a smooth, successful surgery.

Praying for all the families tonight of those who mourn. So grateful for the hope that we have in Christ. Thankful we can cling to His promises, even when life does not make sense.

I sat next to Blaze's bed and watched his peaceful sleep for some time tonight. So thankful...so blessed...so aware that we've been given the gift of another day with him, as challenging as that day might be! Holding on to hope.

Attitude

Have you noticed what a difference attitude makes? It's a simple concept, but sometimes it's breath- taking in its depth. Attitude changes everything.

Attitude can make a chore seem fun or it can make a quick stop somewhere feel like years to complete. Attitude is the difference between dancing in the rain and being drenched by it.

I guess what's the most amazing things about attitude is that it's a choice. It's not an easy choice, but I can control it. I can choose whether or not I'm going to have a good attitude despite the situation I find myself in. That's powerful.

I remember a doctor "on call" one Sunday at the CICU when Blaze was a newborn. I asked a nurse if she had an idea when we might move to the step-down unit. Later the doctor confronted me. He was so hateful and gave me a list of reasons why we couldn't move immediately. Personally, I had no idea it was even being discussed that we might be moving to the other side, I just wanted a ballpark idea (like 3 or 4 days). He was justifying his recent decision to keep us in the unit. That's the only thing I remember about that doctor. He might have done so many great things for our family that I never knew about, but my one, random, angry encounter with him is what I know him by. We can be known for our attitude, either in a positive or negative way.

When the storms of life hit, what are you known for? Do you reflect an attitude of praise and thanksgiving or are you reflecting an "Eeyore" mentality?

Joyce Meyer talks about being a "Prisoner of Hope." No matter what life throws at you, you are anchored to hope. That's what I long to be, someone who is known for an attitude of gratitude, despite what circumstances arise. Being aware of our attitude is a great first step!

Personally I don't have it down yet, I'm definitely a work in progress! Thankful, though, for grace to try again another day.

Surreal

I don't know about you, but I've certainly had moments in my life, where everything just seemed surreal. It was as if I could see me standing there, hands on my head, withdrawing into myself while thinking, "I cannot believe this is happening." That happened to me a lot when I lived in Thailand. (I lived in Bangkok for 2 years after I graduated college.) It would strike at the oddest moments. Once when I was actually having a conversation with a saleslady in a large department store, practicing Thai with my teacher. I kept thinking "I'm actually speaking Thai!" which of course would distract me from the conversation and I had to focus more. Another time when the bus I was in broke down, and I was stranded for awhile, between cities. I was with a group of other Americans, we had one Thai friend with us for the journey. We were, in my mind, in the middle of no where. I kept thinking, "I am stranded in Asia. This cannot be real. I am stranded in Asia!" I also read the headlines of the Bangkok Post one morning and thought, "Hmm...who would have known I would have been impacted by a Malasian Pig crisis?" Surreal.

When Blaze was hooked up to the monitors and at least 14 medications after his first surgery, I was right there with him. I was by his side all the way. I almost passed out when they tried to put in an IV through the top of his head, but I was there. A year or so later I was in Walmart, getting ready to print off some pictures and I accidentally stumbled upon some pictures of the newborn Blaze in the CICU. I almost passed out again. The room whirled around me and I held on to the counter for dear life. That was my child! What he had gone through was just beyond belief. Surreal.

Between medical visits sometimes you get to a point where you almost forget. It almost seems unreal. It is almost "normal." A few minutes during a check up can sure remind you. Blaze's doctor was out of town, so another doctor who worked closely beside our doctor, someone familar with Blaze, was filling in. I thought everything was going fine and at the last minute, we were literally ready to walk out of the door, she decided to get his pulse ox. It was low. Very low in her opinion. Not too "off" of his normal rate at the time. At that point I'm asked questions like, "Are you comfortable having him in your home or would you rather he stay at the hospital?" X-rays were to be ordered, we were taken back into a room, and for a moment, I could see that tunnel again. Surreal. Had to take a breath and explain that it wasn't unusual for him and that we were comfortable with him at home, thank you very much! Surreal.

There are moments that just take your breath away. When you can, remember to breathe again. Like Christine Caine says, "breathe in ... breathe out ... if you could complete that exercise, you are still alive and where there is life there is still hope!" Hold on to hope, even in those surreal moments, God is not surprised. Trust Him to be your strength and be amazed at what He does!

Questions...So Many Questions

I'm a trainer. It's taken some time to realize how important it is to convey to attendees how much you really want to hear their questions. I've learned to stress that some questions are better asked in private, that I'm available during breaks to listen to their questions and provide feedback. I'm always quick to say that I don't have all the answers, but I can send a quick text and get feedback from our team at the office. And wow, when you ask for questions, you never know what you're going to get!

I've learned for medical appointments to write my list of questions down ahead of time, so I make sure I get them all asked. If I've fogotten something on my list or after mulling over comments made, I no longer hesitate to call the doctor's office. Then call again if they don't get back with me when I think they should.

I've also learned that God's okay with my questions, too. He's not offended if I ask Him for wisdom. He's bigger than any frustration or anxiety I feel. I don't ask, "Why me?" because I know He has a plan and a future for us (Jeremiah 29:11). I also know His ways are higher than my ways. Christine Caine calls that "The Trust Gap." That area between my understanding and His revealing.

I remember sitting up in the gardens at Children's Hospital in St. Louis. Blaze was a newborn, and I had finally reached the point where I thought we were never going to leave. He was going to be in the CICU forever and I would never be home again. That sounds ridiculous, doesn't it? That's how I felt, though, totally stuck in my emotions. Tim was about to leave to go home, in order to go back to work. I sat there beside him on a bench, Blaze a few floors below, at that point unable to keep his heart rhythm regulated. A large family had a little sister in the hospital. The kids and their friends were playing hide and seek around us, hiding in the plants, some actually hiding behind us. It was a beautiful evening, and I just sobbed my way through it. I told Tim I felt incredibly guilty because I wanted a baby so badly, and here he was suffering through his little life. I thought all was over. I had lost my hope. Amazingly enough, we were dismissed from the hospital a short time later. Boy the questions I had then! "Why would they let me take such a small, helpless child home?" was just one of the many! That was a whole new game, a whole new set of questions!

I don't know where you are in your journey, or what you're struggling with, but I do know God is greater. He doesn't always give us the answers we want. We've lost a lot of our little friends along the way that we miss greatly. Even in mourning, even when we don't feel like it, when our emotions are all jumbled,  God is good and we can trust in that. He's big enough to take on your questions. He's not irritated by them. What a gift!

I welcome your questions, too. If there's anything I can walk with you or pray with you about, please let me know! I'll be glad to help any way I can.

Joy

Love and Marriage

Today is our (Tim & Joy's) wedding anniversary. We've been married for eight years today. I (Joy) recently commented to Tim, "Can you believe it's been 8 years?" Tim responded with, "No, we've been cheated of a lot of that time, with the doctor's visits, hospital stays, etc. It doesn't feel like 8 years at all." I laughed and said, "It's all perspective, isn't it? I feel like we've been married at least 15 years. Blaze should be 10 already."

In all honesty, we're blessed to have made it through this journey together. When your child is sick and could very well die, it tends to strain a marriage...to put it mildly. Yep! We've snipped at each other at the hospital. We've disagreed with how things should be handled. We are very human and real with our emotions. It's been hard. However, I must say that there is no one else I'd rather be in a crisis with. We all have different strengths and gifts. Tim is a man you want with you and beside you in a time of crisis. He is clear and level headed, he's calm. He can see the situation with a clear perspective and knows how to react to it. Afterwards, when things are okay, that's when Tim melts. Once the crisis is over, Tim takes a breath and needs to renew himself. Me? I am wild card. I am emotional and there are times that I don't know what to do when an emergency is happening. I can do whatever Tim tells me to do, but I'm often frozen until I can hear his directive. During Blaze's surgeries I had to be distracted through them. It's when the emergency is over that I am strong and steady. I am the one who gathers the information as she goes and stores it inside to be pondered on another day. I am the one who sleeps at the hospital and is away from home with Blaze. Separately? We wouldn't do well with this. Together? Wow, we're pretty strong.

God put us together for a reason. He knew the days ahead. It's not been easy, we've learned a lot in the 8 years we've been married, but we are confident that God has a plan for us, to give us a future and a hope. Trusting God for what's ahead! Happy Anniversary, Tim!

What's in a name?

Tim and I wanted to have a unique name for our special guy. "Blaze" caught our attention initially because the "z" went well with "Gilzow". Tim especially wanted our son to have a name that would stand out, he wanted it to be unique. It was important to Tim that doctors and other medical professionals would remember his name. Tim didn't want him to be just another patient, he wanted our son to be remembered.
Last week I sent a private FB message to the surgeon that performed all three of Blaze's surgeries. I wanted to thank him for his dedication and to let him know Blaze is doing well now. The surgeon messaged back that out of all his patients, Blaze's name was one of his favorites. What an incredible compliment. Tim was right, he needed a name that stood out and it did!
I'm constantly amazed at names we call each other, or even worse, the names that we call ourselves! I got to hear a message from Joel Osteen this past week and he emphasized that as individuals we are in battle all the time. The world is ready to tear you down, you at least should be on your side! You need to think positively and trust in the One who formed you. He loves you and you are in His image. In his new book, I Declare, Osteen has daily phrases to say over your life for blessings. He encourages every person to start the day saying positive affirmations about themselves, and claiming God's promises.
Dr. Alan Zimmerman talks about the negative effects of negative thoughts on other people! Just by thinking it, you can physically drain others. Incredible stuff!
So if negative words and thoughts are so painful to us, let's stop saying them. Let's build each other up. Be on each other's support team in this journey. While you're at it, be on your own support team! Think positively about yourself and look for positive things in the situation you're in.
It's hard! Some days wouldn't it be nice to be able just to sit down and talk to a friend about what we're going through?
Did you know that in Exodus 33, it says that God and Moses are friends. What an amazing thought! How incredible, that the God, the Creator of the Universe loves me and calls me "friend." What better name could there be?

"The News"

Everyone remembers the moment they were given information about a medical diagnosis. Each of us handles the news differently. For us, it was a day we had planned very differently. It was the 20 week ultrasound we had anticipated for months! This was the day, March 6, 2008, we'd find out if our beloved child would be a son or a daughter. I (Joy) had been considered high risk because of a rare blood disorder and because of another common medical condition. I had been referred to a specialist for an earlier ultrasound. The doctor at the time had assured me that he felt I wouldn't have issues in my pregnancy and would I prefer to come back to his clinic (about a 45 minute drive away) or did I want to go to my local hospital. I'll be honest, the appeal of staying close to home was alluring, but his office had some amazing equipment. The ultrasound tech had given me a 3D pic of my baby on the first visit, it left me wanting more. I had chosen to make the longer journey, and now here we were. With my husband, Tim, and my mom, Cathy, we were joyfully anticipating this visit.

The ultrasound tech could feel our enthusiasm. We were, well, happy, ready to hear our good news. Almost immediately we learned we were having a boy. Excitement hummed in the air. We were thrilled. Then something happened. It was subtle at first. The woman doing the ultrasound stood up and said, "I forgot, I was supposed to record this," then she stood up and put in a tape. A small thought, almost like a gnat buzzing around, popped up "she does this all the time, it's weird she forgot" but it was immediately waved away. Then a long time was spent taking images of his heart. We even started questioning her about it, and joking a bit. She was serious, then moved to other areas, including his brain and facial features, spending a lot of time. We were still bubbling with excitement and didn't think too much about it. She left to let the doctor know we were ready for him.

The doctor finally came in and started to take some ultrasound pictures himself, which seemed unusual, but we were still floating on our happy news and dreaming up names. Hope Leia was an entirely inappropriate name for a son! Then we were given some news that seemed to make the world shift a bit. It went something like this...

I'm sorry I have some news to share with you, that isn't what you anticipated today. Your son has a signficant heart condition. He will not be born in Branson or here in Springfield, he will need specialized care in St. Louis. The left chambers of his heart aren't developing. He's not going to have a full heart. I'm sorry I don't know your convictions well enough, I need to ask this, would you consider an abortion? The answer was a solid "no". I'm not sure I could even voice it at the time, I know I shook my head. There's also compassionate care, which means, if we determine that he's not going to make it, we let you carry out your pregnancy to full term, but we will not take extreme measures to save him. You would be the one we're concerned for, instead of the baby. No c-section. Now, there is a series of surgeries, it comes in stages. As a newborn he would have surgery, around 8 months old, then another surgery around 2 1/2. Of course, a heart transplant could be an option, but it's hard to find a donor heart. I'm sorrry, this is a lot of information for you to take in.

Something happened during "the news". At that point I looked at my mom who was silently crying, I looked at my husband, who had the appearance of someone who had been hit in the gut with a hammer. I felt protective and defiant, we now call it "Mama Bear" mode. I wanted to know everything. I wanted every detail and what we could do for our son. I soaked in all the details and information I could.

While we were leaving I looked at my crying mom and said, "Shame on this kid. He's not even born yet and he made his grandma cry." On the ride home was my turn to cry. I had to call people at my work and let them know he was a boy, but also the other news we had learned. I cried the whole trip home. I debated during that time if we should even plan a nursery. Yes we needed to get ready for him, but how awful to have a nursery set up and ready to go if there would be no baby to put in the crib. When we got home I threw myself on my bed and sobbed. Then I was kicked...and kicked...and kicked some more. It was almost as if I could hear him say, "I'm here! Don't count me out."

The next day I went to work for part of the day and I sent an email out to almost everyone we email addresses for, asking for prayer. I left work early that day, and we shopped. We shopped for clothes for our baby boy. He was coming, and we needed to get ready!

Our God is greater than any medical diagnosis. We weren't sure what was in the future for us, but we were confident in the One who did know. If we had known how things would have turned out, I wondered if we would have enjoyed the journey a bit more. So thankful for our blessings!

Welcome!

"Two and a Half Hearts" has been a dream of our family's for some time now. How did we come up with such a name? It really represents our fam fairly well. Tim and Joy have a son named Blaze and Blaze has 1/2 a heart. We've longed to have a ministry where we can reach out as a family to others whose children have gone through a devastating diagnosis. Our attention on the FB page might lean more towards Congenital Heart Defects (CHD) because that's what we've been through, that's what we can talk about, but everyone is welcome to join in. On this page we just want to share what's on our hearts, what we've gone through, and how we're currently doing. This blog is going to jump back and forth a bit from previous experiences to where we're at now. Blaze is 4 years old, he's had 3 open heart surgeries and the last one of those was a year ago. We've had some down time from that last surgery and now we want to help others who are in a medical journey, too. Our faith is a major part of our journey. God has blessed us beyond measure. Blaze is thriving! We've had quite a journey...it hasn't been easy, it hasn't been all bad, but it has been something we've been blessed through. We are so thankful for the prayers, and praise the God who answered those prayers.

Thanks for coming on this journey with us!
The Gilzows