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Leanne’s Story

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We found out on my 40th birthday that I was pregnant. What a birthday gift!!! At our 20 week ultrasound they discovered that it was a boy and apparently he wasn’t shy about showing that off!!! J Unfortunately, they also discovered that our sweet boy has a congenital diaphragmatic hernia (CDH). This is a hole in his diaphragm that has allowed his stomach and intestines to move up into his chest cavity and push his heart over to the right side of his chest (his heart should be on the left). The organs being displaced have also inhibited the growth of his lungs. Four weeks later at the next ultrasound, they discovered that the baby also has a heart defect. This is unrelated to the hernia. He has a hole in his heart, the pulmonary valve is narrowed, and his left ventricle is smaller than it should be. Both the hernia and heart defects are surgically repairable with fairly good prognoses individually. However since he has both issues, it decreases his chances of survival. They are giving our son 40-50% chance of living after he is born. He will be delivered by C-section on November 14th at Vanderbilt Children’s hospital in Nashville. This is because they have a machine called ECMO which is a heart and lung bypass machine. As soon as the baby is born, he will be evaluated in regard to the severity of his heart problem and whether his left ventricle will be able to both sustain his life and withstand the surgery needed. If his heart is strong enough, they will do surgery to repair the hernia a few days after he is born. He will most likely be in the NICU at Vanderbilt for 2 to 3 months following his birth. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

They keep saying that this little guy had a “long road” ahead of him. Even though the pregnancy is coming to an end, it feels like not only are we not out of the woods but that we are just now entering into a very dark forest. There have already been some very dark times of unknowns and uncertainties, but there is no denying that God has been with us in mighty ways. We have been able to feel His presence, experience His provision, and have seen His power in mighty ways. He has blessed us with His body of believers who have loved us, ministered to us, and prayed for us. God is so good all the time!!! Thank you for being a part of this journey with us. I’m reminded of Jesus’ words in regard to the man who was blind from birth, “This happened so that the work of God might be displayed in his life.” (John 9:3) Already God has used this sweet little one to display the work of His hands. It has been an honor to already have an opportunity to be a part of what God is doing, to already be able to love this little guy, and to eagerly anticipate what God will do next!!

Latest Journal Update

Drew's 1st Birthday

I have a confession… I was so anxious about how to spend Drew’s birthday. Poor Mike. Every few days during the weeks leading up to November 14th, I kept asking him, “What should we do on Drew’s birthday?” “How do you think we should spend that day?” I’m not sure why I felt pressure to plan something or do something remarkable. I suppose it just felt like a remarkable day and we needed to do something special, but nothing seemed adequate. A couple of people suggested having a “celebration” on that day. And to be honest, my initial thought was that I didn’t think I was going to feel much like celebrating on Drew’s birthday. (I felt the same way when we called Drew’s funeral a “Celebration of Life”. I didn’t feel like celebrating on that day either.) But little did I know that God was going to do something miraculous in my heart. I suppose I should know by now that when I take my hurting and broken heart to our Lord, He does something wonderful with it that only HE can do. He transforms it. But I certainly did not see this miraculous transformation coming and I’m excited to share it with you all…

However, before I share the good things that God has done and is doing in my heart, I want to extend our very big, very heartfelt gratitude for the many of you who are still with us on our journey. We have been completely overwhelmed by the emails, videos, texts, gifts, voice mails, cards, tears, visits, and many, many prayers. Oh, we are so blessed and so very, very thankful! At one point this week I honestly thought that I felt the many hands carrying me along. It is truly amazing to experience the body of Christ in such beautiful ways. God has provided so many people to love us and minister tous. He is so good. Thank you so much for being a part of His body for us. Thank you for being His hands and feet to us. We are grateful beyond words.

And I am so grateful for the way that He transforming my heart. Like I’ve already said, my flesh did not feel like celebrating on Drew’s birthday. But God knew what I needed… a heart transplant. He promises to remove my heart of stone and to give me a heart of flesh (Ezekiel 36:26) He can take even the most hardened heart and exchange it for one that is soft and tender and that is exactly what He has done to mine. Like I said, I wasn’t feeling the whole “celebration” thing as we headed toward Drew’s birthday. In my Bible study group, I voiced my prayer request that I was feeling anxious about Drew’s birthday coming up. There was a young girl in my group that prayed for me that day. I can’t remember her exact words, but she painted a picture of Drew’s birthday as it would be celebrated in heaven. As she prayed, tears ran down my face as the Lord allowed me to picture the most wonderful 1st birthday that any child could have. What a celebration!! Over the next few days, I kept thinking about that heavenly birthday party and I tried to imagine what my precious son would be experiencing. Unfortunately, the only experience I’ve had throwing my child’s first birthday party wasn’t great. For Nate’s first birthday, I focused way too much on making the cake from scratch and decorating it myself. And my brother still teases me about the cupcake that I made for Nate. At that point in my life, I was focused on feeding Nate only healthy food. I’m pretty sure that there was wheat germ in Nate’s birthday cupcake and I’m pretty sure that he didn’t like it. That boy was made for white bread and Krispy Kreme donuts! (Don’t judge me. I get some broccoli in there from time to time.) The point is that I focused way too much on the party (cake, decorations and presents) and less on the child. So as I imagined Drew’s first birthday, I rejoiced in the knowledge that he would be the one celebrated. How do I know this? Because God has given us insight into lots of parties in scripture. I don’t think it was merely a coincidence that we studied about a couple of parties in my Bible study this week (Matthew 9). I loved that God showed me how Jesus went to parties! When Jesus was walking on this earth, there were often crowds of people around Him.This is not the kind of party to which I am referring. I’m talking about the parties that Jesus intentionally attended. In Matthew 9, we see that soon after Jesus called Matthew to follow Him, Matthew threw a dinner party at his house. Jesus came and was ridiculed by the Pharisees for eating with “sinners”. And in the next passages after Jesus was accused of hanging with the wrong crowd, He was asked why His disciples didn’t fast. In Matthew 9:15, “Jesus answered, ‘How can the guests of the bridegroom mourn while he is with them? The time will come when the bridegroom will be taken from them; then they will fast.’” I want to include what I learned about this passage in my BSF (Bible Study Fellowship) commentary….

“To understand the picture Jesus drew of the bridegroom andhis guests, it helps to know first-century Jewish wedding customs. The married couple did not go away for a honeymoon but stayed at home to enjoy it. For a week, the newly married couple kept open house. They were addressed as king and queen and treated as royalty. Their closest friends shared their joy and festivities. Jesus compared the disciples’ joy as they shared His life on earth with the joy of wedding festivities. To live with Jesus is not to live a life of austerity or fasting so much as to experience as deep and constant joy. Jesus lived then visibly on earth. Now, He lives invisibly with us. In the future, He will reign visibly on earth. In whatever time or situation, to live with Christ is to know peace and security. Jesus asked, ‘How can anyone fast and sorrow when with Me?’ Later He said, ‘The time will come when they will fast.’ That time came when Jesus went to the cross, and when Jesus was taken from them, but the Holy Spirit had not yet come to live within them.” (BSFnotes, lesson 10, page 3)

So in light of my belief that Jesus lives within me, I allow Jesus to ask me the same question, “How can anyone fast and sorrow when they are with Me?” Is Jesus’ presence within me enough? Am I filled with joy because my bridegroom is with me? Of course I can rejoice that Jesus is at Drew’s party. But can I rejoice that Jesus is also at mine? Now I have to say here that I do not think that Jesus comes to pity parties because I have invited Him to mine in the past and He hasn’t shown up. So maybe it is more accurate to say that I’m invited to Jesus’ party. He made a way. He died on the cross, bearing my sins in order to provide a way to His Father. It’s the most wonderful and the most costly invitation ever. Jesus made a way to His Father and simply says, “Follow Me.” Will I accept His invitation? Will I go to His party?

So God is giving me a choice. Do I fast or do I feast? God was gracious in reminding me of someone else in scripture who seemed to have the choice of fasting or feasting in a really difficult situation. In 2 Samuel 12, King David’s son was sick. David fasted, wept, and “spent nights lying onthe ground”. David pleaded with God for the life of his child. When the boy died, David’s servants were afraid to tell him. They had seen how the boy’s father denied himself food and comfort as he begged God to spare his son’s life. The servants were afraid that David would do something desperate when he found out that his son had died. Indeed, David reacted in an extraordinary way, but not at all like the servants anticipated. When David found out that his son had died, he got up, he washed, he put on lotions and he changed his clothes. He went into the house of the Lord and he worshipped. And then he ate. His servants seemed confused by David’s response to the death of his son and they asked him about it. David answered, “While the child was alive, I fasted andwept. I thought, ‘Who knows? The Lord may be gracious to me and let the child live.’ But now that he is dead, why should I fast? Can I bring him back again? I will go to him, but he will not return to me.” (2 Samuel 12:22-23) Only God could enable a parent who desperately wanted his son to live to get up and worshipafter his son died. David knew where his son was and that he would be with him again one day. I believe that it was a miracle that David had this joy. I’ve heard the word “miracle” defined as “something only God can do.” God was so good to show me that He is still a miracle worker. Only God could enable David to get up and go worship. And back to Matthew 9, only God through Jesus could tell the paralyzed man to get up and walk. Only God could change a taxcollector’s heart to be willing to give everything up to get up and follow Jesus. Only God could tell a 12 year old girl who already died to “get up” and she did. Only God can enable any of us to get up after something horrible happens. No, I don’t think that He will join us in our pity party, but He will perform a miracle in equipping us to get up and leave the pity party. He will equip us to continue to get up and choose life. He is so good.

So what did we do on our precious warrior’s first birthday?Our family met at his grave and said a few things about our Drew. We wrote notes and drew pictures on helium filled balloons and let them go. God provided the most beautiful day. There wasn’t a cloud in the most beautiful blue sky. I think that I can speak for each of us that we wished that Drew was with us. And there won’t be a day for the rest of my life that I won’t miss my son. But I will smile thinking of the birthdays and the adventures that our precious warrior is experiencing with our Lord and Savior. And I will trust Our Lord to be with me too. Just 2 different parties for now. But one day we will all be at the same party. What a joy that will be!

Much love to you all,