Stay strong…

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This is Brett Varvel and it’s my first time writing on the Varvelicious Blog. I cannot compare to the INCREDIBLE writing talent of my wife, but I wanted to share my perspective about the recent news of our son’s condition. If you haven’t read my wife’s recent post about this you should start there, Your Baby has a 1-in-3 chance of having Down’s Syndrome so you can get a background for this post.

Christina and I sat quietly waiting for the Genetic Counselor after we just received the truck load of what-ifs from the OB specialist. “Duodenal Atresia, Down’s Syndrome, Stay strong… Heart Disease, additional Intestinal problems, Stay strong.” Those two words continued to repeat in my head. I felt numb. I felt confused. However, I didn’t want Christina to see that. I felt that I had to be strong for her.

The next two days were the hardest. I felt pain and was stricken with guilt for feeling that way. I know God is Sovereign. I know He is in control. I know that He loves my son more than I ever could and that however He created Damon was perfect. However, I couldn’t shake the fear. I couldn’t resist the urge to research (even though we were advised not to do so). I wanted answers and as a father I wanted to fix the problems. The thought of my newborn son being cut open to fix a defective portion of his intestines was so overwhelming that I couldn’t handle it. At the moment when my emotions were so great and I thought the floodgates of my soul were going to be opened, I would quiet myself and hold it in. “Stay strong!” However, fear is stubborn and wouldn’t go away. I began to worry about finances, the hospital bills, fathering our two year old daughter, being there for Christina, and staying close to the Lord.

As the days passed, I was working from home a lot trying to finish a freelance project and my daughter, Kherington, was testing me and Christina to a whole new level. It seemed as if she was prompted by Satan to behave at her worst during this trying time. Again those words came back… “Stay strong!” I tried to keep calm and discipline in a Godly manner. The harder I tried to win the battles with Kher, the more I felt like I was losing. One night at my parents house, Kher threw the biggest temper tantrum I have ever seen from her. I felt lost, confused, and scared. We got her calmed down enough to get her in the car, but the battle continued when we got home. I began to wonder if spanking was doing anything at all. I was searching for a glimmer of repentance before I gave up. Finally, I saw something that resembled repentance and knew it was time for bed. We put her in bed and I crawled into bed with her. Christina and I performed the nightly routine (singing songs and praying), Christina kissed her goodnight, but I stayed in the bed with her. Christina closed the door and I held my daughter to my chest. I prayed for my daughter’s salvation, for strength, for peace, for His will to be done and for the fear to be taken away. Tears began to form in my eyes and I heard those words again… “Stay strong!” Only this time I heard something else, “Let me be strong for you.” I knew that the Lord was speaking to me. He was telling me that He is in control, that He is strong in my weakness, and that He will be glorified through this. I began to lay all of my fears and worries at the feet of Jesus, but didn’t feel free from the circumstance. I kissed Kher on the forehead and she placed her hand on my cheek. I told her that I loved her and she nodded her head, Yes.

I went into my bedroom and sat on the bed. I realized that I didn’t feel free because I had not let go of one final fear. This fear had been lingering since the day we first heard that Damon would be having surgery… I was afraid my son was going to die. Christina came up and placed her hands on my shoulders and asked me if I was OK. I grabbed her belly and began to weep. I couldn’t stay strong anymore. Through my sobbing I begged God to protect my son, and I asked him to free me of this fear. I praised the Lord for giving this incredible GIFT (Damon) to us because it was a gift that we don’t deserve. I realized that no matter what the outcome that God would be glorified through this situation. It was in that moment of weakness where I finally felt strong.

As Christina mentioned in her post, we began feeling the prayers of the saints. It’s really hard to put into words, but I knew our loved ones were crying out to Jesus on our behalf. The peace of our Lord began to wash over me, and I realized that I was being given an opportunity to point others to Christ through this trial.

In my most recent film “The War Within,” we challenge the audience to believe that God is Enough. That in the best moments and the darkest moments of life, He is Sovereign and Loving. In this trial of uncertainty I was given the opportunity to live out the very message I was trying to share with the world. However, it’s easy to tell others what they need to do in these moments and it’s entirely different to live it out. We always want to see a miracle. We always want to see God at work… That is until the situation happens to us. In that moment of brokenness I gained a better perspective on our situation. That is, I gained a revived eternal perspective. God is Enough. He is all I need and He knows what is best for me and my family.

Finally, after the longest two weeks ever, we learned that our son is at low-risk for Down’s Syndrome and Heart Disease. Aside from the surgery he will have, he appears to be a perfectly healthy baby boy. I Praise GOD for this answer to prayer! I have been able to reflect and meditate on why God let this happen. While I don’t have all the answers yet, I do know that in these past two weeks I have grown closer to the Lord then I have been in years. I Love Him more. I am more thankful for the little things in life and I have a deeper compassion for those with Special Needs. They are a beautiful creation and gift from our Creator. I also have grown deeper in love with my wife and children. I am a very blessed man and don’t deserve them. However God, in his infinite grace and mercy has blessed me with my family.

Last week we met with the pediatric surgeon and visited the Neonatal Intensive Care Unit where we will be spending a few weeks with our son. At this point all signs point to a normal delivery. Praise God! Once he is born he will be cleaned up and prepped in his NICU bed. They will do tests to confirm his duodenal atresia diagnosis. Our family will get some brief time with him before his surgery, which will take place sometime between 24-48 hours after birth.  After his surgery, it is pretty much going to be a waiting game. The time it will take for him to heal and be able to eat is not set in stone and will depend on when the intestine starts to work again. Christina and I are so blessed to be able to have such a great medical team surround us and help us through this period in our lives.

My life verse is Proverbs 16:9: “In his heart a man plans his course, but the Lord determines his steps.” Was this my plan? Absolutely not. Now all I can do is continue to rest in the Lord and wait patiently on His timing. I can’t wait to hold my son and tell him that I love him. Christina and I continue to covet your prayers.

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“Your baby has a 1 in 3 chance of having Down Syndrome…”

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Doctor: …He also has a 1 in 4 chance of heart disease or some sort of heart defect.”

Me (in my head): “Wait? What? Can we slow down here?”

Doctor:…..meet with genetic counselor…”

Me: “Genetic counselor? Down syndrome? Aren’t I too young? Oh, that’s why he questioned how old I was…”

Doctor: “….blood cell test is 99% accurate…. 2 weeks to get results….”

Me: “2 weeks?”

Doctor: “Cardiologist will do echocardiogram….”

Me: “But his heart has sounded and looked perfect up to this point! At least it did 2 weeks ago!”

Doctor: “Any questions?”

Me: Blank stare. I look at Brett. Blank.

Doctor: “Ok. Well, now you will meet with the genetic counselor to ask about your family health history, give you more information about the blood cell test, and make your next appointment.”

Yes, this pretty much sums up my initial reaction to hearing this news, about 2 1/2 weeks ago. Let me start from the beginning….

My second to last blog post was an update on Damon regarding his 32 week ultrasound. On that day, it was a very crazy schedule for my OB, which resulted in me getting the ultrasound, waiting, leaving the office and coming back a couple hours later, waiting, and then finally meeting with my OB. As you may have read, everything looked great, except he was breech.   Then, on March 31, I went back to see my OB for my 34 week appointment. When she came in, she immediately apologized for the last appointment. I shook it off like no big deal, but then she goes on to say that she is apologizing because after careful observation at the pics from the ultrasound, she saw something questionable in his bowel. She and the ultrasound tech questioned that Damon had a condition called pyloric stenosis – which is when the pylorus muscle thickens and prevents food from passing from the stomach to the small intestine.   She told me that she is referring me to a high-risk OB to get it further checked out.  If he has it, he will be required surgery to allow nutrition to pass, or else he would be vomiting over and over.

Two days later on April 2, we meet with a high-risk OB at St. Vincent. We had another ultrasound done to confirm or rule out the pyloric stenosis.  Well, Damon was being stubborn. In 2 weeks, from 32 to 34 week gestational, he had moved to the transverse position (his head was pointing towards my hip). And on this day, he just had to choose to be BACK up, rather belly up, so it was hard for the tech to get a good picture of his heart.  After several minutes, (and me getting up and moving, practically doing jumping jacks to get him to turn belly up), we had the high-risk OB come in and take a look.

What he confirmed is that Damon does not have pyloric stenosis, but rather a condition called duodenal atresia.  It’s similar to pyloric stenosis, however the location is different. There is a thickening of cells in his duodenum (which is the first part of his small intestine) that is causing a blockage, and therefore little or no nutrition will be able to pass through.  He will be required to have surgery after birth.

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When the doctor first told us the diagnosis, we were prepared for that answer and the solution of surgery. We had 2 days to pray and prepare ourselves with the news of the possibility of surgery and staying in the hospital for some time after birth.

Then…. the conversation at the beginning of this post occurred.  The doctor started spouting out statistics, and Brett and I sat there feeling like punching bags.  If you click on the link highlighting “duodenal atresia” above, you will read,

“Associated abnormalities have been found in some infants with duodenal atresia…” As you heard the doctor above, 1 in 3 babies with duodenal atresia also have Down Syndrome and about 20% have heart disease.  Therefore, to first rule out any genetic disorders, I had a blood cell test done.  My blood was immediately drawn and taken to a lab to test for the following genetic disorders: Trisomy 21 (Down syndrome), Trisomy 18, Trisomy 13, Monosomy X, and Triploidy.  As you also read, it took 2 weeks to get the results of either “high risk” or “low risk.”

And so the waiting began. The first few hours after leaving the hospital was probably the hardest. We were numb with shock.  After all, everything had been going so well and there were no warnings beforehand. Brett called his parents first (while vacationing in Florida), and then we did a 3 way call with my dad, mom, and sister at her house (where Kherington was staying during the OB visit).  That’s when I finally let my emotions go.  Right away though, I knew and trusted God. I know He is Sovereign. He knew Damon before the foundations of the world. He created him as HE saw fit with the exact egg and exact sperm to come together at the exact time. That gave me comfort. On the phone with my parents I said, “I’m not asking why us? I’m asking why NOT us?”  Damon is a gift from God no matter what his condition.

The next 2 weeks were an emotional roller coaster.  We told family and close friends. We could FEEL the prayers of our family and friends. Each day got easier, and I knew it was because I was surrounded by God’s peace that passes all understanding.  Brett and I prepared ourselves emotionally and mentally (well as much as we possibly could at this point) for the possible news that Damon had Down syndrome.  Even though the odds were still for us (2 out of 3 did NOT have Down syndrome), we still did not want to get our hopes up.   Our prayer over and over again was the same as Jesus’ in the garden before he was arrested and crucified on the cross,

“Father, if you are willing, take this cup from me; yet not my will, but yours be done.” (Luke 22:42)

We ultimately wanted God’s will for us and Damon. He sees the big picture. We tried to stay focused on eternity. And when you start looking through God’s lens, your perspective starts to change. Our thoughts became, “So what if he has Down syndrome? Why is that such a big problem? Yes, there will be many challenges, but are we more concerned about what people think and not having the perfect American family?”

One day Brett was doing research and came across the statement that people get tested for these genetic disorders and then abort their baby if it comes back high risk. He was flabbergasted.  Yes, people do this because they want the perfect baby. The no problems, straight A, go to college, get a good job, marry the right spouse, make money, perfect kid.  Would I ever abort my child? NEVER. It’s sin because life starts at conception.  However, do I desire that list for my baby? Yes.  And one of the big things that God taught me these 2-3 weeks is to Let. It. Go. (and I’m not talking about the theme song from Frozen!)

I’m type A, controlling, organized, need-to-have everything-planned-out-months-in-advance type of person. If I can control my environment and circumstances then I believe life can go so much smoother. I can anticipate change and be prepared. And then we received this news and as Brett and I prayed that the Holy Spirit will teach us through this trial, I knew immediately what He wanted me to hear.

Nope Christina. For one, you can’t do it yourself, and you cannot control it all.  The clean house and the obedient toddler among a perfectly organized schedule does not matter in eternity. Pinterest, Facebook ads, and even good intention blogs do not have the answers. There is no such thing as a perfect family. And what IS a perfect American family after all? Who says the family with Down syndrome or William’s syndrome cannot be considered a “perfect” family in our American society? Well, there’s no such thing as perfect. And if there were, we wouldn’t need Jesus and His grace and forgiveness. Let’s stop looking down on others. Let’s stop comparing ourselves to each other. Yes, I’m talking to the Christian families, who probably judge and compare the most.  That’s called following the Law and not grace.

Brett and my perspective on special needs children have changed as we have looked through God’s lens. During that waiting period, my love for Damon grew so much and the fact that he possibly had a genetic disorder didn’t change my love. God even loves Him more than I do.  God loves ALL people, regardless of their health, race, color, financial status, etc. As my pastor said this Easter morning, “In Christ, there is nothing we can do that would make God love us more, and there is nothing that we have done that will make God love us less.”  No matter what sin we have committed, how successful we become, how “perfect” our family is, or how many chromosomes we carry, God is Love and His love never changes.

I’m not going to lie.  When I used to see a special needs person, one thought was always, “I’m glad that’s not me or my kid.”  C’mon. You know you think that too if you don’t have a child with special needs.  Now I see the child in a wheelchair at the children’s museum, and think, “Beautiful. Made in God’s image. God loves her/him. That COULD be my kid, and after all, I’m not in control; God is and He knows best.”

Well, on April 14, I received a call that the blood cell test came back “low risk.” They cannot say 100% no Down syndrome or other genetic disorders, but it is fairly accurate that he does not have Down syndrome.  Fortunately, Brett was working from home and I immediately rushed in his arms and told him the news. We both cried and prayed our thanks to God for taking “this cup from us.”  Brett was actually more surprised because he really began to wonder if God had a specific plan for our lives where Damon would have Down syndrome.  But He is sovereign and for some reason is allowing us to go through this trial and not allow him to have a genetic disorder.

The next day I had another ultrasound and then a pediatric cardiologist performed an echocardiogram. He said that Damon’s heart looked exactly how it should at this point in gestation and did not see anything alarming. Praise the Lord again for the good news.  The high risk OB again confirmed the duodenal atresia. He said that he didn’t want to give us false hope that we were completely out of the woods and that there wouldn’t be a disorder or syndrome that would show up after birth, but he did reassure us that our road would be much smoother than a lot of families he sees.

We meet with the pediatric surgeon on Wednesday, April 23. We have so many questions regarding the surgery and will have most answered then.  Please pray with us that God will continue to surround us with His peace and that He will make us more like Christ through this process. Our desire is that He will be glorified most.

*I wanted to add a quick statement about my OB who didn’t tell me about the questionable ultrasound picture until my next appointment.  When she was apologizing for first missing it and not telling me until that appointment, I immediately told her it was God’s timing in the matter.  The day after that ultrasound, Brett and I left for San Antonio to spend the weekend at the Christian Worldview Film Festival. If we had that news, we would have been worried and not had been able to enjoy the weekend as we did. My OB is wonderful, and it gave me another opportunity to give God all the glory.

Spring Break in San Antonio

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Brett and I were able to get away for a long weekend in San Antonio, Texas in March.  Brett has been once, but I had never been to the city. San Antonio is beautiful! We got some Texas warmth and a break from the Indiana freezing winter.

Before I get to the main reason we went to San Antonio, here are some pics of us visiting the Alamo. It was a good review in history, and I must confess it made me want to go brush up on some American history!

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Since I’ve been craving meat this entire pregnancy…We had a date night at

Fogo de Chao.

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We went to San Antonio to attend the Christian Worldview Film Festival.  It was the first year of this particular film festival, and The War Within was selected as one of the feature films.  The film was shown 3 times. Here is Brett answering questions at one of the showings.

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After each of the showings, Brett probably answered questions for at least 10-15 minutes, and then people came up to us afterwards to continue asking more questions and complimenting the film.

Brett had the great opportunity to meet our Sales Agent for the War Within: Rich Christiano. He’s a very successful Christian filmmaker who shares our passion: reaching people with the Gospel of Jesus Christ. We are very blessed to have him a part of this project.

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We were eligible for 4 awards at this film festival.  Brett kept telling me not to get my hopes up so I wouldn’t be disappointed if we didn’t win anything. However as I sat there before the ceremony started, I thought and prayed, “Surely, Lord, we will win at least 1?!”

There were a total of 13 awards presented. The Best Trailer award was the third award handed out. And sure enough, The War Within won it!  If you haven’t seen the trailer yet, see it here.

Then we sat off to the side as the rest of the awards were handed out.  The last 3 awards were Best Feature Film, Best Gospel Presentation, and Audience Choice Award.  And yes, as you may already know, The War Within won all three.

CWFF 2 CWFFWe were humbled by all 4 awards.  In our opinion, the best award we received was the Gospel Presentation award. That means that the gospel was clear, and that was our goal when making the film.  I must say, we were a little embarrassed to have received all 4 awards, especially the last 3 in a row. Yet, when we walked to the platform for the 4th time for the Audience Choice Award, the audience gave us a standing ovation.  But all praise and glory goes to God!!!  They were standing for Him and what He has done through our willingness to follow and obey His leading.

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The entire trip was overwhelming, to say the least. The response was so positive and encouraging; we walked away speechless and in awe of God’s goodness and confirmation that we are following His will.  We were also thankful to have met so many people. What moved us the most was those who asked us to pray with them because the film touched them in some way.  One teenager wanted to pray with Brett because he felt like he was Michael in the film; his relationship with Christ was more of the Mind rather the Heart.  A woman came to me in tears asking me to pray for her husband who after 20 years of pastoring, has walked away from Jesus and her family.

This is why Brett and I are involved in this ministry of Christian filmmaking: to advance the Gospel of Jesus Christ and to change hearts towards Him.  And this is only the beginning!  We continue to pray and wait on the Lord’s timing as we begin the process of marketing and distribution. If you haven’t already, “Like” our page on Facebook: The War Within Movie or follow us on Twitter: @TWWmovie.          You will receive updates on distribution, how you can get a screening at your church this Summer, and when and where you can buy the movie when it is released (probably Fall 2014)!

Pray with us please.  And if you feel led to give to the project financially, go to the House of Grace Films website for more information.

Oh, and we had to purchase a bag to fit all our awards for the plane trip back!

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A kid was so excited about the film that he went home and made Lego men out of the 6 soul members in the film!

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(Conscience, Heart, Will, Memory, Mind, Emotion)

To see what my friend Megan’s up to this Spring, check her blog out at Meg’s Five.