Moms: Stop the lie. You do have time for Jesus.

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“Mommy, I’m going to sit and read my Bible in peace. I’m going to do my devotions and talk to Jesus.”

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So she sat down in front of the door (she was waiting for a friend to come over) and “read” her Bible. This post is not a “look at me and how well I am doing as a mom” post.  If we want to grab coffee sometime, I could tell you all the mistakes and things I’m not doing well.  Yet, my hope is that you can learn something that took me almost 5 years to learn as a mom.

Note: for those of you that do not know me, this is from the perspective of a stay-at-home mom with two children.  You may have a different perspective based on your home, work, children, spouse situation. But one thing is true that we all have in common as moms: we are commanded to love God with all our heart, soul, mind, and strength (Matthew 22:37).   And this common goal is what this post is focusing on.

As a mom, I have struggled in the past with finding time to spend with Jesus, studying His Word and praying. The Christianese word is “devotions,” as you read my daughter calling it.   When my daughter was born, my life was consumed with her.  Many first time moms experience this: life revolves around your child, you are afraid of doing anything wrong, and are convinced that one error is going to ruin your child forever!   I confess that my daughter became my idol pretty quickly.   I can confidently say that because she summed up this definition by Tim Keller: “An idol has such a controlling position in your heart that you can spend most of your passion and energy, your emotional and financial resources, on it without a second thought.”

Then the second born came along. After how I was idolizing my first born, God needed to teach me that my children are gifts from Him and ultimately belong to Him.  Damon was born with duodenal atresia and had surgery less than 72 hours after birth.  Leading up to his birth and even after, fears of the worst case scenarios flooded our minds. Through this experience the Spirit taught us that God is in control of every breath our child takes. Yet, still in our unbelief we tend to hold on even tighter when we cannot control our children’s lives, resulting in idolatry.

Every additional child is a transition yet gives you a different perspective.  I roll my eyes at myself when I look back and think about all the things I stressed over with Kherington.  Or how I really did believe I didn’t have time to do anything!  I totally had time to take a 10 minute shower!  I try to remember what DID I do when she slept so much?  Somehow, when more children come along we still make it work, even if the meals aren’t from scratch and your toddler is wearing the same pajamas for a couple days. Mmhmm…sorry Damon!

Shortly after having Damon, I read blogs on how to schedule your mornings so that your days can run smoothly based on priorities and goals for the day.  Spending time with the Lord (aka devotions), always was on that morning to-do list. As I made my morning time table, my goal was to wake up an hour before the kids to read my Bible and pray.  I am a morning person so I thought it was very doable. However, my hubby is a night owl.  When we got married, I was convinced I would change him to be a morning person. Ha!  I gave up after…oh…6 years of marriage that it ain’t ever happening.  In fact, he turned me more into a night owl!!! So be careful what you say you want to change about your husband; you may be the one that changes!

Some days I was successful at getting up early while others I was not, especially if I stayed up too late the night before to spend time with Brett. However, on the days that I did not get up in time and I woke up to Kherington’s face staring at me with her wide eyes, I never took time later in the day to spend with Jesus.  I lived each day with the perspective that if I didn’t wake up early, I wasn’t going to have time to do it the rest of the day.  In essence, I was telling Jesus, “You only have from 7-8 am every day. If I miss it, sorry, I’ll try again tomorrow. You really weren’t as important as _________. ”  Yikes. Writing that out makes me cringe since it was my heart attitude, and oh, how it pained Jesus!  I viewed my devotional time as an item on my morning to-do list that needed to be checked off so I can go about my day, rather than desperately pursuing my Savior and passionately worshiping Him.

Also, I was deceived by Satan in believing that I didn’t have time the rest of the day. After all, I have to get to my never-ending to-do list.  Then I’m too tired at night to focus and just want to sit and relax with Brett.  I believed the lies we all say to ourselves: “I just don’t have time.” Or “Ok. I do have a little time but not 15, 30, 60 consecutive minutes to read and pray!” Or “I’ll get to it later, I promise!” Or “I will make time when my children finally _________.”    And this is right where Satan wants us, because if we fill our days with stuff that we think is beneficial but….let’s be honest…much doesn’t count for eternity…then we are exhausting ourselves silly trying to gain the whole Pinterest-perfect-how-many-likes-can-I-get-on-Facebook world and the end result could be losing our souls, and worse, our children’s souls (Matthew 16:26).

I finally stopped the lies and believed truth: I do have time. I have 24 hours. If God thought we needed more time, He would have given it to us.  It’s all a matter of priority. We make time for the things we love or want to do.  Saying, “I don’t have time for you, Jesus” is not loving Him with all my heart, soul, and mind.  Instead, I’m saying, “I don’t love you right now, I love someone or something else more.”   And as moms it is usually our kids, and we easily justify that we are obeying God by sacrificing and loving them, when in fact it’s disobedience since the first and greatest commandment is to love Him FIRST then your neighbor. Our children fit into this “neighbor” category, in which the SECOND greatest commandment Jesus gives is to love our neighbors as ourselves (Matthew 22:39).

The past year has been a difficult time for Brett and me as we have been waiting on God’s timing for the next steps in our lives.  God has been humbling us like never before. I have been desperate for Jesus and His Word, hungering and thirsting after Him. In the trial, I have finally made Jesus a priority in my life and stopped forcing myself at my “perfect” time to do my devotions, as long as I get filled by Him at some point that day. During this season of my life, some days I get up early before the kids but most days I don’t.  Brett or I will make coffee while getting the kids breakfast. Once the kids are done, they find or I give them something to do.  They know that Mommy will be in her room with her coffee reading her Bible and talking to Jesus.

I thought that I had to do my devotions only when the kids were sleeping so I wouldn’t be distracted.  Another stupid lie.  My kids are 5 and 2 years old and in the last year my time with Jesus has been deeper, closer, and more intimate than ever before, and it was when I have been seeking Jesus when they were awake!  Do I have to break up fights? Of course. Do they run in and out of my room? Definitely.  But they have learned that this is Mommy and Jesus time.  Kherington doesn’t ask me to come help her anymore. Instead, she says, “Mommy, when you are done reading your Bible, can you….”  “Yes honey. I am almost done talking to Jesus.”  Yet some days my time is cut short and doesn’t go as planned.  I give myself grace, and remember that Jesus is always beside me throughout the day to talk to Him no matter what I’m doing.

The best part….No. More. Guilt.  More lies from Satan: “You should be spending time with them! You are neglecting them right now!  You need to be doing x, y, z!”    No, Satan.  When my kids are watching me spend time reading God’s Word and praying, it’s actually one of the MOST loving things I can do for them.  Brett recalls his dad studying the Bible consistently when he was growing up.  Brett became curious as to what and why his dad was so passionate about God’s Word, causing him to spend time reading it to find out for himself.  Most importantly, when I put my to-do list down and yes, even say no to my child at that moment to spend time at Jesus’ feet, it’s the MOST loving thing I can do for Him.

Francis Chan writes in his amazing book, You and Me Forever, “Lisa and I want to raise children who love Jesus far more than they love us. We want them to trust Him more than us, to enjoy Him more than us, to find more security in Him than in us. And we are convinced that the best way to teach this is to demonstrate it. We have to make it clear to our children that we love God more than we love them.”

Wow!  Convicting right!?   This is my goal too and that my children will know that I love Jesus. Then when I hear Kherington tell me that she needs to go read her Bible and talk to Jesus…or on some days crawls up in my bed with her Bible too, I fight tears as I praise and give glory to God.

Moms, you do have time for Jesus. It is only a matter of how desperate you are for a deeper relationship with God.  Does your daily life show that you are loving your children (or yourself) more than Him?  Stop trying to fit Him in your perfect schedule like I was trying and failing.  Instead, put Him anywhere in your day, even if it seems inconvenient and the kids are running in and out of your room. I dare you to try it, and I’m convinced that He will put everything else in its proper place as your perspective changes how you view your time spent on this earth.  And someday you may find your child, whether 5 or 15, reading her Bible and praying because you demonstrated to her that Jesus is most important.

 

 

Thank You, Jesus, for my Crohn’s Disease – Part 5

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Watching your child go through a life-threatening experience is the hardest thing as a parent. I had only been a mom for 2 years – 6 months -15 days when my second child was born and had bowel surgery 63 hours after coming into this world.  When you see your child helpless (and even dead-like), one of the many cries out to God is “Couldn’t it have been me instead!?”

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This picture was taken moments after Damon came out of surgery for duodenal atresia. Read his story from my perspective, Brett’s perspective, and God’s perspective.

All we could do is sit and hold him, trust the nurses and doctors, and pray. Of course this question stares you in the face at some point: “Why God?”

Why was Damon born with this congenital anomaly? Why God did you allow the earthquake in Nepal?  Why are you allowing Christians to be hung, beheaded, shot?  Why did baby Elijah at 13 weeks contract Fifth’s disease and die in my friend’s womb? Why was my friend murdered by her husband?

I’m not going to answer these questions. You can read back in Part 3 that most of life’s pain, death, disease, etc is a result of sin and not God, because God cannot sin nor does he cause it.

Some questions we may never know the answer until we see Jesus face to face.  But I do know this:

“Seek the LORD while you can find him. Call on him now while he is near.
Let the wicked change their ways and banish the very thought of doing wrong. Let them turn to the LORD that he may have mercy on them. Yes, turn to our God, for he will forgive generously.
 “My thoughts are nothing like your thoughts,” says the LORD. “And my ways are far beyond anything you could imagine.
For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts.”  Isaiah 55:6-9

And when every.single.person that has ever lived stands before the Creator and Lord of all, there will be no questions.  Every knee will bow.  We will understand. We will see Jesus on His throne and will know that our purpose is to bring glory to His Name. (Whether you believe this or not is irrelevant because Absolute Truth does not change based on belief or lack thereof.)

So chronic pain and suffering, people trapped and dying under rubble, riots and killings, a mother holding her lifeless 13-week in utero baby is pleasing to God?   No, I sure don’t serve a God that gets pleasure out of these things.

His glory comes from “Seek[ing] the Lord while you can find him!  Call[ing] on Him now while He is near!  Changing our wicked ways. Turning to God, for He WILL forgive generously.”  With open arms He died on a cross. With open arms He is waiting for us to come take a leap of faith.

Then when…

our 3 day old son goes through bowel surgery…

the mom says goodbye to her baby…

the Christian who is seconds from being shot in the head…

the man trapped in the rubble without earthly hope…

the sister of my murdered friend cries herself to sleep again…

we can all say…

“For great is the LORD and most worthy of praise; he is to be feared above all gods.” Ps 96:4 

“The LORD gave, and the LORD has taken away; blessed be the name of the LORD.” Job 1:21

God can take the effects of sin and turn them to Good for His Glory.  We don’t praise the Lord for the sin and evil of the world. We praise Him because He is Love. Mercy. Grace. Forgiveness. Without Jesus, there would be NO hope for the suffering, disease, earthquakes, riots, murders. But because of Jesus, there is Hope.  Hope that His love and grace will be sufficient to meet all our needs.

And here is why I believe this to be true:

Hopefully by now you have read through my Crohn’s story. This is part 5 and will be the last. If you haven’t, will you take a moment to go to my home page and scroll down to start with Part 1? You’ll understand this post better.

I explained in Part 4 how I was denied health insurance because of Crohn’s but it brought me to Samaritan Ministries.  The members of Samaritan paid for my projected maternity health costs before Damon was born. Yet, because of Damon’s diagnosis while he was still in the womb, I had to switch to a high-risk OB physician and delivered at a different hospital then planned. To make a long story short, when I went to talk to a financial advisor at the hospital, the lady gave me an incredible discount, which was lower than the projected costs I submitted to Samaritan Ministries.

Therefore, I had received from the members over $2000 more than my health costs.  I contacted Samaritan and received an email with two other members’ names and addresses where I needed to send my leftover money to help with their medical costs.

I downloaded the document and waited for it to open.

Then I couldn’t believe my eyes. I read:

Theodore, newborn son of _____ and _____, was born prematurely and had surgery to correct a congenital problem affecting his digestive tract. Please pray for complete healing.

Tears. More tears. What?!  NO WAY!! BREEEEEEEETTTTT!  You won’t believe this!!!!!

I have Crohn’s disease.  I was denied health insurance. I joined Samaritan Ministries. I had a baby boy with a “congenital problem affecting his digestive tract.”  I had to switch doctors and hospitals.  My health costs for my labor and delivery were lower than projected.  My extra share money was sent to help a family WITH A BABY BOY WITH THE SAME CONGENITAL PROBLEM!!!

That is the all-knowing, all-powerful God I love and serve. That brings God glory.  That is my purpose.

I immediately took out my stationary and wrote a card explaining Damon’s similar condition and shared the link to my blog post.  A couple days later I received a Facebook message from Theo’s mom sharing his story.  Sisters-in-Christ and moms sharing a connection all because of my chronic disease I used to see as a curse.

And almost a year later both boys are healthy and growing, and daily we praise Jesus for poop! Yes, poop.  The very poop that I feared most with Crohn’s disease. But hold an infant with wires all over his body hooked to monitors, and you will be crying out to God for him to poop.  God sure does have a sense of humor.

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This is why I can and always will say…

Thank You, Jesus, for my Crohn’s disease.”

From Where I Stand {Great is Thy Faithfulness}

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Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

This is one of the songs on Nancy Leigh DeMoss’ piano recording called Be Still.  Let me tell you how I came to receive her piano meditations CD.  Before Damon was born, we took a tour of St. Vincent Women’s hospital and their NICU. We met with one of the neonatologists. She went over what to expect after Damon’s surgery and the details of having a child in the NICU.

Once Damon was born, the neonatologists were doing their rounds, when the same one we met with stopped me after noticing my True Women bag. (True Women is a Christian women’s conference by Nancy Leigh DeMoss’ ministry, Revive Our Hearts that takes place every 2 years in Indianapolis). She told me how much she loves Nancy and the True Women conference. I agreed. She remembered meeting with us and gave me a hug.

The next day was Damon’s surgery and she came by to tell me she was praying for me. She asked me how I was doing. I honestly said I was anxious to get the surgery over with, in which she asked, “And what are you doing about that?”  I said praying. She smiled and gave me a hug.

The following day she handed me the Nancy Leigh DeMoss piano CD and told me how she had 2 copies at home. She had no idea how she received 2 copies, but when she saw them, she heard the Holy Spirit tell her to give me one of them.  And the hymns on the CD has been such a comfort to listen to back and forth to the NICU in the car. Be Still My Soul. Be Thou My Vision. ‘Tis So Sweet To Trust In Jesus. Jesus, I Am Resting, Resting. Great Is Thy Faithfulness.

This is one way that God has proven faithful in our lives during this trial. A small gift but a huge blessing. I have been on the other side many times watching people go through very hard circumstances in life. Especially people from my church and other members of the Body of Christ. I’ve prayed, helped deliver meals, etc.  Yet this time we were on the receiving end. And wow, Brett and I were overwhelmed with the prayers, encouragement, and support. Not that I didn’t expect any less. I thought how this is what the Body of Christ looks like in action; fellow believers helping one another. It has made me even more sympathetic to other people going through trials.

Damon’s surgery and recovery could have been so much worse. As I mentioned in a previous post, he could have had Down’s syndrome and/or heart disease. The morning of the surgery we received a call from a nurse practitioner getting our consent to do surgery. We had not arrived yet at the hospital (we didn’t know for sure what time surgery would be until she called us).  All along we thought Damon had duodenal atresia and it would be a pretty easy fix. The NP told us that after doing several tests over the weekend, they still were unsure of his condition and the extent of it. She went over possible problems from the best case scenario (duodenal atresia) to the worst case scenario (possible dead bowel where he would need a bowel transplant).  Again, Brett and I got off the phone and stared at each other speechless. We were still going into the unknown. And all we could do is trust God. Trust that He is good regardless of the outcome. Trust that He is faithful.

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Fortunately, it was duodenal atresia. The surgeon did a bowel bypass where the part in his duodenum was blocked.  The surgeon also found that Damon had a condition called, Meckel’s diverticulum. Apparently, this mass of tissue could cause havoc later in life and starts acting like a second stomach. The surgeon removed it, had to reposition Damon’s bowels, and also took out his appendix.

Once out of surgery, it was the waiting game.

Waiting for his bowel to start working.

Waiting for his output from his stomach through his mouth to lessen.

Waiting for poop.

The doctors said average was 7-10 days post-op until his bowels would start moving again.  The same neonatologist would come by from time to time to see how we were doing. “Waiting” was always the reply and she would answer, “Be still and wait on the Lord.”

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9 days post-op the initial waiting was over. Damon was pooping, had bowel sounds, and less output was coming out of the tube through his mouth.  They proceeded to give my milk through a tube down his nose. And then from there he kept progressing positively. They gave him such a small amount at first and slowly increased to see if he tolerated it and the bowels moved it through his tract.  He did not regress once.

The next day he was bottle feeding and the tube came out.

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A few days later I was able to breastfeed him twice a day. Doctors started saying he could probably come home soon if he kept doing well. Then, after 20 days in the NICU, Brett and I walked out of there hopefully to never ever return.

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God is faithful. God’s people were faithful in praying daily for Damon. We could feel the prayers and the peace that comes from the Prince of Peace, Jesus Christ. The doctors and nurses were very impressed with how quickly Damon progressed and was able to go home. Most babies with similar conditions may be in the NICU for several weeks to a couple months. God is our Healer.

Now, I have to ask myself and maybe you have found yourself asking the same questions:
If God didn’t heal Damon… If his condition was the worse case scenario… If I was still sitting and watching Damon today in the NICU and for several more weeks… If God allowed Damon to die…

Would I still say He is good? He is faithful?

I think about the story of Job. I believe that sometimes Satan comes before the throne of God and asks God to allow trials and hard circumstances in our lives to test us to see if we will turn from God. Satan did it with Job and took away everything Job had – his family, possessions, wealth.  Yet Job did not curse God to His face like Satan thought he would. Instead, he fell to the ground and worshiped God saying,

“The Lord gave and the Lord has taken away; may the name of the Lord be praised.”

Wow! What faith! What trust in who God is and will always be: Faithful. Good. Trustworthy. As I look back on the trials in Brett and my marriage the past 6 years, it’s amazing to see how faithful God always is to us.  We’ve been through health problems, loss of job, financial uncertainty. Brett has taken a leap of faith in starting a wedding film business and a non-profit Christian film company, in which 2 films have been created. And when I think about when God has used us the most to further His kingdom, that’s when we had the most trials. During the final steps of making The Board, I was severely sick with histoplasmosis and hospitalized.  And now when we are at the final steps of releasing The War Within, we have a baby in the NICU.

I wonder especially in these times if Satan was before God asking Him to allow Satan to throw some fiery darts at us to see how we would respond.  Sorry Satan.  It’s actually made our faith stronger than ever.  We will continue to fall down and worship Him at all costs. And God knew that.

Jesus said, “…in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

As followers of Christ, we will have trouble and trials. But we also can have peace knowing that God is good. He is faithful. Do you believe it? Can you say the same thing when you face trials? Trust Him. I promise you won’t regret it.

Great is Thy faithfulness, Lord, unto Brett, Christina, Kherington, and Damon!

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To read how God has been faithful to my friend Megan and her family, check out her blog.

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.

duodenal-atresia

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.