It's a slippery slope...

Every once in a while, my mind wanders into some dangerous territory and I allow myself to dwell on certain questions that haunt me...

"Will kids pick on Zach as he gets older because of his health condition?"
"Will he 'fit in' when he is a teenager?"
"Will he be physically able to participate in PE?"
"Will he be physically able to play on a sports team when he is older?"
"Will he have to have more surgery?"
"What will Zach's life be like as an adult with CHD?"
"Will he be sickly?"
"Will he be able to work or will he have to go on disabilty?"

Once I allow them into my mind, these questions won't leave me alone. They peck around inside my head and bring me down. When I allow myself to ponder these things... when I open that door just a crack, more negative thoughts and more questions force their way in. I find that once I start thinking, I cannot stop. The negative thoughts take root in my mind and grow like an aggressive vine, wrapping chutes around every positive thought... smothering... choking. These thoughts lead down a very dark path.

These are the things I must turn to when my mind gets carried away.

Truth is what I need to dwell on when I start down that slippery slope. Truth uproots that deadly vine. Truth shines light into dark places. The Truth is that Zach has done incredibly well in his 4 1/2 years despite his medical diagnosis. There is no reason to believe that he won't be able to do whatever he sets his mind to. 

"Then you will know the truth, and the truth will set you free." John 8:32

Faith forces me to change my focus from these worldly troubles and "turn my eyes upon Jesus." Jesus is Zach's Great Physician. Jesus is Sovereign. Jesus has a plan for Zach's life and will equip him and us to live it to the fullest. If we have Faith.

"He replied, "You of little faith, why are you so afraid?" Then he got up and rebuked the winds and the waves, and it was completely calm." Matthew 8:26

Hope keeps out those negative thoughts and searing questions. Hope allows us to dream big for our Little Heart. Hope reminds us that awareness and advocacy lead to research and research leads to improved healthcare for CHDers and improved healthcare leads to a better life.

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

 
Truth, Faith, and Hope cause me to turn from the negative and seek the positive... to turn from what the devil would have me focus on to the abundant life that Jesus intends. For Zach's sake.

What helps you fight off the questions that haunt you?

Cardiology checkup

Zach's cardiology appointment went well today... except for the part about holding him down to remove... you guessed it --- THE BANDAID!!! The good news is that Dr. Raunikar said that we do not need to keep a bandaid on it anymore. Hallelujah!!!

He weighs 30.3 lbs, is 37.5 inches tall, good bp, good pulse ox at 90-92, EKG and echo looked good. He left him on the same doses of aspirin and enalipril and reduced his lasix to one time a day (Yay!!!). The poor kid gets a lot of exercise running back and forth to the potty after taking that lasix!

The doctor said he can start preschool when school starts but he cannot climb on the outdoor play equipment. I will have to check to see if they can accomodate him in that way. The other issue is that he is still on the fat-free diet until the end of the month, so we will have to provide all his food. You can imagine that this "hovering heart mom" is having a hard time with trusting that someone else will protect him from collisions, climbing, and fat-laden food. I also have to compile a list of symptoms for the preschool staff to look for in order to educate them about his condition. Fortunately, he will be at a preschool about 2 minutes away from my school.

Rebecca will be trying out for volleyball at her school next week. She loves the sport and is pretty good at it, so we are hopeful that she will make the team.

Speaking of school, I can't believe its almost here!!! I have been in my first-year-teacher class this week and will be officially starting next week. I am feeling overwhelmed and anxious but I am really excited to begin this new adventure! We welcome your prayers as we make these adjustments within our family.

Stuck...

Remember this?



Well, that's the problem. The Band-aid's stuck on Zach.

How is it possible that open heart surgery is a piece of cake compared to changing the bandages on Zach's chest tube incisions? Do you know how hard it is to hold down a screaming 4-year-old --- without hurting him, mind you (I mean we are only 2 weeks post-op) --- and peel off a little-bitty Band-aid? And can it possibly hurt that bad?!!

OK, now I feel a little better. Please share your experiences with this and what to do about it.

Making a list and checking it twice...

I'm making a to-do list and a packing list and a shopping list. We are getting ready to head to the "Low Country". MUSC. The Medical University of South Carolina. That place that causes a jumble of emotions --- hope, fear, determination, dread, relief, exasperation, compassion, fatigue, gratitude. Right now, the list-making is a way to occupy my mind with some purpose. Otherwise, my mind will carry me away to places that I don't want to be --- places where I fret and worry about that which I cannot control.

Zach asked me this morning, "What'cha doin'?"
"Making a list" I said.
"For what?" he asked.
"Of things to pack for our trip to Charleston" I said.
He thought for a moment. "Where I gonna stay?"
"You're going with Mommy and Daddy" I said.
"Why we going?" he asked.
"So we can go visit Dr. Bradley and some of his friends" I tried to say with some excitement in my voice.
"I don't want to get a shot" Zach said.

Fortunately, he dropped the conversation then and went back to munching on his breakfast.

My heart was so heavy as I thought about picking up the conversation with him later in the week. We must prepare him for what he is about to experience. We must help him to understand that he needs to go through this to make him better. There is no way he can understand it. He must learn to trust Mommy and Daddy to take care of him and do what's best for him. In the same way, my burdened heart must learn to trust the Lord to take care of us and do what's best for us.

It is all about faith.

Psalm 143:1
O LORD, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.


Psalm 9:10
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.
 
Psalm 28:7
The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.


Psalm 147:3
He heals the brokenhearted and binds up their wounds.

Matthew 6:34
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

1 Peter 5:7
Cast all your anxiety on him because he cares for you.

Bumped

We got home from our pre-op checkup with our cardiologist this morning to find a message on our machine from MUSC. I thought, "Maybe they just want to confirm everything...". No such luck.

We have been bumped.

They are having to clear the whole schedule next week so they can take care of some emergency cases. My heart goes out to those families. I hadn't ever thought about the fact that we were once one of those emergency cases (when Zach was 3 weeks old and registered a 65 on the pulse oximeter - yikes!) and may have caused some other family the heartache of having to rearrange their schedule. The woman I spoke to indicated that we might not be rescheduled until the end of the month.

I have been so bummed out all day. I know I shouldn't feel this way. I know that God is in control. We have so much to be thankful for... but most do not know how hard it is to prepare for your child's heart surgery. You get yourself all psyched up and ready to get it over with and behind you. You prepare yourself mentally (thinking about what to expect), physically (making arrangements for siblings, planning what to pack), and spiritually (sending out prayer requests). You stay cooped up, avoiding germs. You...

Ooooohhh! Hold on... Phone call from MUSC!

Hallelujah! Our new date is Monday, July 12. I can handle that. We will have to be there for pre-op on Friday, July 9, which is a bit inconvenient since we will be 4 hours from home, but I'm not complaining. Oh, thank you Lord!!!

Thank you for your prayers for Zach as we prepare! Continue to pray for all of us to stay healthy and for Dr. Bradley and his team.

Zach and Daddy wrestling/snuggling on Father's Day

God doesn't make mistakes...

I actually started writing this post a long time ago. It has been sorta "marinating" in my mind.

After Zach was diagnosed with CHD, I struggled with many questions. The one that plagued me the most was,

If God doesn't make mistakes, then how do you explain heart defects (or any other birth defects, for that matter)?

First, let me set the record straight. As any parent of a child with special needs will tell you, there is a whole continuum of emotions that you go through, particularly in the beginning. You experience everything from anger with God to denial to fear to complete trust in The Creator. Since God created me and my emotions, I don't think any of those feelings are wrong unless I allow them to turn me away from God indefinitely. God will use even negative emotions to draw me to Him, BUT I have to make the choice to move toward Him and not away from Him.

So, as Bill and I sat in the waiting room during Zach's first surgery, the BT Shunt, I opened my Bible and began reading. I was crying out to God to please save the life of our baby through the skilled hands of the surgeon, anesthesiologis, and nurses. I was questioning why God allowed this to happen to our little boy. I was needing confirmation of what I knew in my head to be true --- God does not make mistakes.

At the time, my mind just couldn't produce any addresses to scriptures that would settle my head and heart on this matter. Now, as I sit at my computer, I can use Bible Gateway to do a keyword search to find any number of verses about God's perfection, such as:

Deuteronomy 32:4

The Rock—His work is perfect;

all His ways are entirely just.

A faithful God, without prejudice,

He is righteous and true."

Psalm 18:30
As for God, his way is perfect;
the word of the LORD is flawless.
He is a shield for all who take refuge in him.


Matthew 5:48
Be perfect, therefore, as your heavenly Father is perfect.


Romans 12:2
Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will.

God is perfect. His will is perfect. His creation is perfect.

Despite turning to these truths, even now I still struggle with my son's diagnosis - Congenital Heart DEFECT.
A defect is a mishap, a flaw, a mistake. Not perfect.


In the midst of all the turmoil going on in my grieving heart as I sat in that waiting room, as helpless as my baby laying on that cold operating table, God gave me this scripture:

1 Corinthians 12: 14-20

Now the body is not made up of one part but of many. If the foot should say, "Because I am not a hand, I do not belong to the body," it would not for that reason cease to be part of the body. And if the ear should say, "Because I am not an eye, I do not belong to the body," it would not for that reason cease to be part of the body. If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be. If they were all one part, where would the body be? As it is, there are many parts, but one body.

Now, I know that Paul is talking about spiritual gifts here and how everyone has an important role, no matter what they were gifted to do. Maybe I am interpreting this scripture out of context, which can be a dangerous thing to do. Nonetheless, I know beyond a shadow of a doubt that 1 Corinthians 12: 14-20 gave me a measure of peace that morning so long ago. God didn't make a mistake. God created Zach and his special heart just as He wanted them to be. Perfect.

How to prepare...

Today Zach overheard me telling my mom on the phone that we had to go to the hospital on April 6th. His little brow wrinkled up with worry and he said, "We goin' to da hopital? Who gonna lay down?" (I think he was asking who was going to get poked and prodded?) He was obviously starting to get anxious about it and he put both his hands over his eyes. I reassured him that Mommy and Daddy were going to be right there with him and that it would be a lot like when he goes to see Dr. Raunikar (our cardiologist). I told him that they would check his oxygen and blood pressure and weight and listen to his heart. I promised that we would get to see some old friends --- Dr. Bradley (maybe) and Dr. Bandisode. I told him that we would meet some new friends, as well. I told him that maybe we would get to meet the same people that had taken care of Derrick and Zeb and Anna Grace, our local heart zipper friends.

My heart breaks to think about what he will have to go through in just a couple of weeks. I get nervous as I think about talking about the procedure more with him as the time draws nearer. At the Palmetto Hearts conference that we attended in February (which was wonderful!), the Child Life specialist from MUSC spoke about this very topic. I was surprised to learn that it is best to begin preparing your preschool child only about 2-3 days prior to the procedure/surgery. Because preschoolers have no concept of time --- Zach's famous for asking, "Am I gonna take a nap tomorrow or later?" --- talking about surgery that is weeks away will only cause them anxiety. Makes sense. On the other hand, she told us that it is not a good idea to spring it on them, either. She knew of one family that told their child that they were going to McD's but took him to the hospital instead. Not a good idea.

I did show Zach this picture from after his Glenn at MUSC.

Of course I have other pictures that I wouldn't dare show him for fear of scaring him.

For those of you with older children, how have you prepared them for procedures/surgery? What worked and what didn't with your child? I love that we can learn from one another!