3 years ago, almost to the day, I stood on my back step with my baby girl and prayed to God that His will be done – and probably meant it for the first time in my life.
What I want to share with you today is some of my experience with the goodness of God. I don’t know about you, but I seem to need to learn my lessons the hard way. And for those of you who don’t know my story, I’ve been through some hard things in the last 3 years.
I am a mother of 4. I have Sabrina, my oldest, who is 8, and you all know Zoe, my youngest at 8 months. I also had twins 3 years ago who died at 4 ½ months and 6 ½ months.
Nicholas and Olivia were born on July 18, 2007, on my husband’s birthday. I didn’t know I was carrying twins until my 20 week ultrasound. I had suspicions because I was so big so early, but it was my second pregnancy and the midwife had only heard one heartbeat so far. We found out at the ultrasound that their heartbeats were synchronized. The technician was looking around a bit, then stopped and said, “Hm. What do you see here?” It was a while since I had had a prenatal ultrasound, so I thought I was seeing a baby. She said, “That’s two heads there.” Horrified, I said, “On one body??” She quickly reassured me that there were two babies.
And so our journey began. I had a good pregnancy, went right to the end, even had to be induced because I was so big I couldn’t stand it anymore. Life with two babies was very challenging, but I loved it. Nicholas was a dream baby – content, rarely cried, slept a lot. Which was helpful in taking care of Olivia – she was colicky and needed a lot of attention. She was so tiny; I think she felt she needed to fight to make sure she was getting taken care of.
We were concerned about Nicholas. At six weeks he was quite floppy, couldn’t hold up his head, and it was getting harder and harder to feed him. He was admitted to the Children’s Hospital for a few days at the beginning of September for a variety of tests. We were told that they suspected he had Spinal Muscular Atrophy Type I and wanted to confirm with a blood test. We were told we would probably only have a few more months with him. SMA is a genetic condition where the cells along the spinal cord do not regenerate, resulting in muscle weakness, difficulty swallowing, and eventually respiratory failure. It is the #1 genetic killer of infants. And all this was going on right around Sabrina’s first day of school. I remember having to leave Nicholas at the hospital so I could see her off on this important day.
What do you do after that? Have you ever had a dream broken so hard that you can feel and hear it shatter right in the center of you? We went home, sought the Lord in prayer for Nicholas’ healing, and carried on with life as we knew it. I refused to believe that God would let Nicholas die. I was firm in my belief that he would be healed, and did not read any materials on SMA or speak to families with SMA. I held on tight to my big miracle, and did whatever I could do to make Nicholas comfortable as his weakness progressed.
Just after Sabrina’s 5th birthday, Nicholas took a turn for the worse. I drove him to the emergency room in the early hours of November 2nd, praying he wouldn’t die in his car seat on the way there. He had a collapsed lung but was stabilized and admitted to a special care wing. He was only there for a couple hours before he crashed again, with the other lung collapsing and was taken to the intensive care unit. This is where the doctors started to talk to us about orders to not resuscitate and “comfort measures” (which I didn’t know then, refer to palliative care). I had no idea why they were talking to me about these things – I knew Nicholas was going to get better. They realized that I was not following what they were saying and started on a treatment plan to try to get him well enough to come home. After about a week in intensive care, Nicholas steadily improved enough to be taken back to the special care wing, where we worked on a plan to get him well enough to bring him home.
Oh my little boy was such a trooper. He fought and smiled and was the darling of the special care wing. I spent my days at the hospital and evenings at home with my girls.
By the end of November, Nicholas had no fight left in him. The doctors pulled us aside and asked us to consider taking him off of supported breathing. I couldn’t believe we had to give up but one look at him and we knew that we had put him through enough. We spent a peaceful afternoon saying goodbye to our little boy on November 27, 2007 and his spirit left us while I held him in my arms.
I still thought that my miracle was coming. If God let him die, then maybe he would raise him from the dead. But as time went on and we took care of his little body I knew that the miracle I was expecting was not going to come. I was desolate. We went home to our girls, exhausted.
Which brings me back to where I started my story this morning. A week after Nicholas died, I was spending my first alone time with Olivia in a long time. I realized that for a 4 month old baby, she didn’t do much. She couldn’t lift her head, wasn’t kicking and moving around, and wasn’t even attempting to roll over. I was sick as I realized that she had SMA too. I called my husband and the pediatrician and bundled Livvie up to take her to the hospital to confirm what I already knew.
I stood on my back step, about to take my baby girl back to the same place I just left, and the only thing I could do was give up. I said to the Lord, “Your will be done” and meant it for the first time in my life. I was too tired, too heartsick to fight any more for what I wanted. I needed God to take over because I had nothing in me for this. I had been to the abyss and back already and hadn’t been destroyed yet. God had to carry me through this or I would surely die.
Olivia was confirmed with a clinical diagnosis and had the blood test as well. We stayed overnight that night, and took her home the next day, but we were back within a couple days when she started to experience respiratory troubles. The special care unit staff told me later that seeing us come back with another baby to their unit was the hardest thing they had ever seen. And they have seen a lot of hard things. We didn’t put Olivia through all the things we put Nicholas through. We made her comfortable and were able to bring her home during the daytimes. She came home for Christmas and we celebrated it with her and all our family. Early in January, Olivia succumbed to respiratory failure and we said goodbye to her on a cold winter morning, just as the sun was coming up on January 12, 2008. Her spirit left us while she was snuggled in her daddy’s arms. Again, we went home empty and desolate.
I wanted to share with you today some of what I know about the goodness of God. The biggest thing I learned through all this is that God IS who He IS regardless of what is going on in our lives, and what saved me from complete destruction is devoting time to finding out who this God really IS.
14 And God said to Moses, “I AM WHO I AM.” And He said, “Thus you shall say to the children of Israel, ‘I AM has sent me to you.’” Exodus 3:14You see, I had entered into this journey with the mistaken belief that I had earned my salvation. Why was this happening to me? I studied the Word, I prayed every day, I was involved in a church. I was supposed to be protected from this stuff! What God has been doing in the last three years is tearing down the lie that I can (and need to) earn my salvation. God never promised that things would be easy, in fact there are many places in His Word that tell us to expect difficult things, but He did promise that He is good. And He challenges us to try Him out and see.
“Oh, taste and see that the LORD is good;I knew deep in my spirit that there was no alternative to God. You know, how you just know something? So in my sorrow I needed to find out what kind of God was this that I served that would give me the abundance of twin babies then take them away from me one by one. I still don’t know the answer to that one. But in all that I’ve learned about God since then I’ve decided that if He hasn’t revealed it to me then I don’t need to know right now.
Blessed is the man who trusts in Him!” Psalm 34:8
“3 Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has begotten us again to a living hope through the resurrection of Jesus Christ from the dead, 4 to an inheritance incorruptible and undefiled and that does not fade away, reserved in heaven for you, 5 who are kept by the power of God through faith for salvation ready to be revealed in the last time.
6 In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, 7 that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, 8 whom having not seen[a] you love. Though now you do not see Him, yet believing, you rejoice with joy inexpressible and full of glory, 9 receiving the end of your faith—the salvation of your souls.” I Peter 1:3-9
“2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing.” James 1:2-3
“12 Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; 13 but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy.” 1 Peter 4:12-13
“21 Peter, seeing him, said to Jesus, “But Lord, what about this man?”But after all this what He did reveal to me is that it isn’t finished yet.
22 Jesus said to him, “If I will that he remain till I come, what is that to you? You follow Me.”” John 21:21-22
“8 “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.” Isaiah 55:8-9
Have you ever tasted cookie batter before you put in the sugar? What if someone came in to the kitchen while you were making cookies, tasted your batter and told you it was terrible? You, knowing the full picture of what was going to happen, would tell him that it isn’t finished yet. That’s the truth I lean on when things around me look hopeless and taste terrible. It’s not finished yet. God has a plan, and it’s a beautiful one. But it’s not finished yet. Or better yet, it is finished from Jesus’ perspective, but we’re still in the middle of the story.
11 “For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.” Jeremiah 29:11I went through some hard things with my babies, and I have some hard memories. But I also have some amazing memories too. God was with me in such a strong way during that time that to even hear a worship song from that time will move me to tears with remembering the fullness of His presence. The Word says that He will carry your grief and sorrow, and friends that is the absolute truth.
28 “After this, Jesus, knowing that all things were now accomplished, that the Scripture might be fulfilled, said, “I thirst!” 29 Now a vessel full of sour wine was sitting there; and they filled a sponge with sour wine, put it on hyssop, and put it to His mouth. 30 So when Jesus had received the sour wine, He said, “It is finished!” And bowing His head, He gave up His spirit.” John 19:28-30
3 “He is despised and rejected by men,I can remember feeling so sheltered, so shielded, so protected and that was only by the grace of God. He knew what we had to walk through and showed Himself able to carry our grief and our sorrow so we could walk through it and remain whole. Not only whole, but better! I can say that I have never been happier in my life, and that is through the power of the Word in me. The Word works, my friends! You’re going to need to come to the point where you either choose to believe the Word or not. Is God who He says He IS?
A Man of sorrows and acquainted with grief.
And we hid, as it were, our faces from Him;
He was despised, and we did not esteem Him.
4 Surely He has borne our griefs
And carried our sorrows;
Yet we esteemed Him stricken,
Smitten by God, and afflicted.
5 But He was wounded for our transgressions,
He was bruised for our iniquities;
The chastisement for our peace was upon Him,
And by His stripes we are healed.” Isaiah 53:3-5
1 “The Spirit of the Lord GOD is upon Me,
Because the LORD has anointed Me
To preach good tidings to the poor;
He has sent Me to heal the brokenhearted,
To proclaim liberty to the captives,
And the opening of the prison to those who are bound;
2 To proclaim the acceptable year of the LORD,
And the day of vengeance of our God;
To comfort all who mourn,
3 To console those who mourn in Zion,
To give them beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the LORD, that He may be glorified.” Isaiah 61:1-3
There are some of you here today that have hard things in your life right now or hard things coming up that you think you should be protected from. And you are! But maybe not in the way that you are expecting. I challenge you to ask God for a new perspective on that hard thing in your life. He loves to answer prayers like that. He tells us over and over in His Word to trust Him. But I have learned that you cannot trust what you don’t know. Taste and see that the Lord is good! Seek to know Him as He really IS and discard the things that you have believed about Him that aren’t truth from His Word.
It took me two years of learning about who God IS to trust Him when He told us to try again for another baby. Corrie and I are both genetic carriers for SMA, so any child we conceive will have a 25% risk of having the same genetic condition Nicholas & Olivia died from. We knew we had to do something or spend the rest of our lives here on earth in the hell of self-protection, trying to keep ourselves from being hurt again. God told us to walk by faith, and not by sight, and so we did.
“1 For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. 2 For in this we groan, earnestly desiring to be clothed with our habitation which is from heaven, 3 if indeed, having been clothed, we shall not be found naked. 4 For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. 5 Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee.And God was faithful. We named our miracle Zoe Grace, for in the step of faith we took in bringing her in to our family, she brought us new life, abundant life.
6 So we are always confident, knowing that while we are at home in the body we are absent from the Lord. 7 For we walk by faith, not by sight. 8 We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord.”
II Corinthians 5: 1-8
10 “The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.” John 10:10Would I be here speaking to you of my happiness if God hadn’t given us another healthy baby? Yes. Maybe our reward wouldn’t have been Zoe but it would have been something else that would have been just as wonderful.
7 “Instead of your shame you shall have double honor,God tells us over and over He wants to give us the desires of our heart.
And instead of confusion they shall rejoice in their portion.
Therefore in their land they shall possess double;
Everlasting joy shall be theirs.” Isaiah 61:7
6 “But without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him.” Hebrews 11:6
4 “Delight yourself also in the LORD,But we also have a responsibility to seek Him in showing us what the true desires of our heart really are. Only God can discern the thoughts and intentions of the heart. We think we know what we want, but no one knows us better than our Father.
And He shall give you the desires of your heart.” Psalm 37:4
9 “ The heart is deceitful above all things,I could talk all day about the things I’ve learned about God, but what I want to leave with you today is that God is good because He says He is. There are things in our lives that aren’t good, some of them are our fault, and some of them are not, but He has also promised that Jesus would redeem them all. How great is that?
And desperately wicked;
Who can know it?
10 I, the LORD, search the heart,
I test the mind,
Even to give every man according to his ways,
According to the fruit of his doings.” Jeremiah 17:9-10
12 For the word of God is living and powerful, and sharper than any two-edged sword, piercing even to the division of soul and spirit, and of joints and marrow, and is a discerner of the thoughts and intents of the heart.” Hebrews 4:12
So here are some tips for a busy mom to get a daily dose of the Word, that truth about God that will sustain you through all the storms of life:
• Sitting down and reading your Bible may be obvious but is not the only way to the Word. Television and internet ministries are a great source to hear the Word while you are trying to get things done.
• I’m actually an auditory learner and I didn’t make a lot of headway in my Christian walk until I invested in teaching on CD. Joyce Meyer has been one of my favorites, but Charles Stanley, Chuck Swindoll, and Kenneth Copeland are fantastic too and all are on radio, TV, internet, and Podcast.
• I would download the podcasts and CD’s on my iPod and listen while on the bus, going for walks, and cleaning the house. There’s also a great podcast called the Daily Audio Bible that takes you through the Bible in one year.
• Reading books about Biblical topics that quote the Word count too. There are many concepts that I only really learned through reading authors like Philip Yancey and CS Lewis.
• Let’s not forget Christian fiction. Francine Rivers allowed me to visualize what godly relationship should look like and helped me to understand a new perspective on God’s love. The Circle Trilogy by Ted Dekker is an incredible allegory of how Christ came to save us from sin.
I’m not saying that you don’t need to read your Bible, because you know you do! But don’t make it a law that “thou shalt sit down with thy Bible”. Seek to get the Word in you every day in any way you can.
6 comments:
I LOVE this post. It touched me on so many levels. But the pasrt that will stay with me is about the cookie dough without the sugar. I also truly believe that we all have a reason for being here and that God is good. Thank you so much for sharing your powerful talk.
I am glad you were able to share your story with this group. I also think that there is always something healing about writing it out again, and seeing how far you have come.
I don't know if I have told you this before but you are truly an AMAZING person who continues to inspire so many! Thank you for not just being who you are but for being willing to share yourself with the rest of us.
I have to agree that you are quite amazing. Thank you so much for sharing your story - of joy, sorrow, renewal and growth.
Thank you for posting this. I was so touched by your testimony at Mom's group - but got even more out of it today. Thank you. {{{HUG}}}
I especially appreciated the last few paragraphs encouraging us to get the Word wherever and however it works for us.
I feel like I've had a rich bible reading time, just going over this post! God is SO good. I'm grateful He's brought us together in this friendship that's growing.
xw
ILOVE this post ...... i think the only time i have cried like this is when i read Nicky and Livies book... what a powerful story.. you are an amazing lady and everytime i need some reasurance i look to your blog for guidance .. the references to books and cd's will be so helpful to me.. i love you so much Lisa and hope that i will one day be half as happy as you are in your faith .. pray for me !!love mom
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