And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. –Phillipians 4:7

London Joy goes to Disney World to celebrate Jocelyn’s birthday!

First I want you to know that our daughter, who will be born tomorrow, May 9th, is already a series of miracles. Here are just a few:

  • London’s very life – like any other – is a miracle in and of itself.
  • April was told at a young age by doctors that she would never become pregnant.
  • Although very wanted, our daughter’s conception was not planned (you can read between the lines).
  • 95% of babies with London’s condition are either miscarried or stillborn – she has beat some incredible odds.

For those who have been following our story, you know that London has been diagnosed with Trisomy 13. Honestly, before 17 weeks ago, I had never heard of Trisomy 13. It is incredibly rare; it affects between 1 in 16,000 to 1 in 21,000 live births.

When I first learned about our daughter’s diagnoses (before I even knew she was a she), I went into research mode. “Surely there must be some sort of treatment,” I told myself. “Can’t they just operate?”

Trisomy 13 is a chromosomal condition in which the 13th chromosome of some or all of the cells contains additional genetic material. Ultimately what this means is that the syndrome itself is untreatable as it occurs at the genetic level. Doctors may be able to treat symptoms and specific conditions caused by Trisomy 13.

Unfortunately, London has many severe congenital defects caused by the syndrome. London’s known congenital defects include: hypoplastic left heart syndrome; a diaphragmatic hernia – stomach and intestines have displaced heart and lungs; underdeveloped lungs; severe cleft palate – potentially no nasal passageways; anophthalmia (no eyes); proboscis (malformed nose that is non-functional); enlarged kidneys; polydactyl hands and feet; and an underdeveloped brain.

Because of the combination of these things, the doctor’s have said that there is nothing medically that can be done.

Those are some big, scary facts; however, we serve a faithful God.

Daddy loves mommy and London Joy!

Tomorrow or shortly thereafter, we will see one of three miracles.

The first miracle is the one that we hope for, the one we have prayed and that many thousands of people have prayed for – that our London Joy would be supernaturally healed. That she would experience what the doctor’s call a ‘spontaneous correction.’ We believe that this is possible. We see dozens of places throughout scripture where God has done and promises to do this very thing.

The second miracle we could see tomorrow is one where the doctors are able to do something for London. It is a miracle where she has been misdiagnosed or where some sort of partial healing has occurred. It is a miracle that turns the statement “there is nothing we can do” into “here are our options…”

Honestly, for me, that will be the most difficult place we could go. The thought of our daughter undergoing multiple surgeries, having to make so many important decisions and waiting for the outcome of each is overwhelming. As hard as it would be, this would still be a miracle.

I wish that I could end this post right here saying that everything will work out as we hope and desire; however, we are not promised that certainty.

In C.S Lewis’ Chronicles of Naria series, there is a character, Aslan the Lion who is an allegorical representation of Jesus. Over and over throughout the series, we are told that he is “not a tame lion.” God is not ours to control. He is not a man that can be manipulated. Faith is not transactional; it is not a currency that we can earn through working or that we can spend on our desires. The name of Jesus is not a magic word that grants prayers.

I do not fully understand God; I never will. On many days our situation still seems like a bad dream and the only words I can utter are that “I don’t understand.”

London’s earthly crown, as sweet as it is, will pale compared to her heavenly crown.

Our third miracle is that London would pass from this life and enter into God’s kingdom. We believe from the Bible that when we arrive in Heaven, we receive a new and perfected body. April and I believe with all of our hearts that if our precious London Joy passes away that her soul will immediately be taken to Heaven where she will receive a perfect and whole body. And that as she opens her eyes for the first time ever, she will see the face of Jesus.

Our daughter will pass from one life to the next having never known anything but love. While it is heartbreaking to think that we will not see our daughter grow up, if this is the path that is in front of us, it is still a miracle.

And I wonder to myself if perhaps it is an honor. Maybe it is an honor that God would choose her to be with Him now. Maybe it is an honor that He would look at her short life and say, “London, you have fulfilled your purpose. Well done my good and faithful servant!”

These words are hard to say. Some of them are hard to accept, but no matter what happens in the days to come, we believe that God is faithful.

Our hope is not in London’s healing. Our hope is in Jesus.

“Safe?” said Mr. Beaver; “don’t you hear what Mrs. Beaver tells you? Who said anything about safe? ‘Course he isn’t safe. But he’s good. He’s the King, I tell you.” ― C.S. Lewis, The Lion, the Witch, and the Wardrobe

#prayforsweetpea

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10 Comments

  1. God bless your family. Your faith will create miracles, however they may be.

  2. Loosing my sweet zoey 1/30/17 i know the pain and the feeling you are feeling. My sweet zoey didnt have to suffer. I pray London does not either. I have reached out to you and have followed your journey. May god give you comfort peace and love

  3. Ron, just want you, April and London to know you’re in my thoughts and prayers and want you to know I admire your strength and your faith in God and the miracles you will witness! This world truly needs more people like you and April.

  4. Praying and believing with you! Love your family and sweet pea.

  5. our love and prayers are with you ,much love

  6. Tears are streaming down my face. I just read your 3 miracle post and my heart has joined yours in prayer. Your faith has lifted mine immensely this day and I thank you for sharing your heart with us. Please know that I will spend this day thinking and praying for your family.

  7. I have been praying and will continue to pray and stand with you in faith. Our God is able! My heart breaks for you, I know this is a difficult journey. I have been asking the Lord to wrap His loving arms around you and that you will feel the fullness of His love as you walk through this journey.

  8. You April and London are in our prayers. If you need anything, please don’t hesitate to ask.

  9. Much love to you April and London. I to have my beautiful daughter Jasmin who had Trisomy 13. So with all my heart I am lifting you all in prayer. We were blessed with miracle number 3 and although it has been a tough journey I know that one day we will meet in heaven with our loving, gracious Heavenly Father and that she suffers no more. I know his grace will sustain you all no matter which miracle you receive.

  10. My son had full T13 and passed away at 5 days old. He was born 11/4/15 and was a whopping 7 lbs 1 ounce. Big for a T13 baby who was born 4 weeks early! I miss my little boy but I know I will see him again. I will be praying for you guys as you navigate through this journey of hope, joy, gratefulness and grief. I’m glad you have such a strong faith.

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