Allistaire was born the beginning of March 2010. Almost 3 weeks later little Jaron was born. Jaron is the nephew of our dear friends Christy and Jeremy. Christy’s brother, Brian, and sister-in-law, Monica learned at their 24 week prenatal check up that something was wrong with their baby, their fourth child. After he was born, they learned that Jaron has a rare genetic disorder called Miller-Dieker Syndrome. The following is an excerpt from Monica’s blog which describes Jaron’s condition:
“A condition characterized by a developmental defect of the brain (partial deletion of chromosome 17), known as lissencephaly… These brain malformations cause severe intellectual and developmental disability, seizures, abnormal muscle stiffness and weak muscle tone, feeding difficulties, and distinct facial features (a.k.a.CUTE). Common secondary medical issues include failure to thrive, feeding/swallowing difficulties, and respiratory complications. Often a gastrointestinal tube is placed for feeding. Pneumonia seems to be the leading cause of death and usually within the first few years of life.”
There were so many nights I got up to nurse Allistaire. So many 1 and 4-in-the-mornings. I would gaze down at the warm little wonder that was Allistaire and I would think of Jaron and Monica. I prayed and prayed for them, my heart utterly aching knowing the joy I was experiencing with Allistaire and the great challenges and heart break that Monica and Brian had as their reality. I heard through Christy about all the doctors appointments, all the unknowns. When Allistaire started to smile and then coo and then roll over, eventually sit up, crawl and then walk, I knew how different was Jaron’s development. In my heart, Allistaire and Jaron have been tied; two little lives both precious to the Lord but on such different paths.
The first day I posted to this blog, Monica was the first to comment that she was praying for us. I cannot sufficiently convey what it means to me that a mom who has gone through what she has with her precious child the last 21 months says she will pray on our behalf. Her words come from days and days and days of walking a hard road, but walking it with the Lord Jesus Christ. I asked Monica if she would be willing to write out a prayer for us and she has given me permission to share it here with you. There are so many of you who have said you would pray for us, and while it is not often possible for us to have you in our presence to hear your prayers, being able to read a prayer is the next best thing. This is Monica’s prayer. It comes from a heart that has experienced the particular road the Lord has placed her on. We all have different experiences and places from which we’ve come, and these color our prayers. I’d love to invite you to write us a prayer if you’re interested in sharing your words. This is not the place for performance or the necessity of eloquence, just a way we can use this handy technology to pray together.
“Lord Jesus, Thank you for your love and care over each of us. You KNOW us in ways we barely know ourselves. You give us what we need, you teach us what you want us to learn. I’m so thankful that there is always more to understand. Help me to continue growing in ways only You can teach. I pray Jai and Sten are growing and expanding in ways they never imagined. Lord soften their hearts to Your Holy Word and Your gentle voice. May they truly hear You speak. At times like this, where we find ourselves in a place we never imagined and always dreaded, You are there. Thank You, Jesus, You are HERE! For reasons we may never completely understand, You have put us in a place of complete helplessness and we plead for Your help. For when we are weak, then You are strong. May Jai and Sten feel Your strong arms surrounding them, holding them up when they feel like the world is falling out from under them. Give them courage, give them hope, give them peace that passes all understanding. You are God of the universe, Creator of all things and You are our personal savior, right here with us. Sometimes it feels like our circumstance is too much. It’s so easy to feel like there is no hope, but Your Word says to wait for You, to put our trust in You. That You will make all things work together for good for those who love You and are called according to Your purpose. Often, we don’t want to be called to such a sacrifice of trusting You unconditionally. It hurts. But You understand our pain. So we look forward, not to what is seen but to what is unseen. Reality. Even though it doesn’t seem real because we can’t see it. You have promised, so we believe. Ug, this is so hard. God it hurts. Help us to see. We want to have eyes to see and ears to hear, help our unbelief. We hope for healing and we wait for it patiently. Thank you Father God that in our weakness, when we don’t even know what to pray, Your Spirit intercedes for us. Thank you that our current suffering is beyond compare to the future glory that will be revealed in us. You are good, and your love endures forever. Nothing can separate us from your love. When all feels so overwhelming, may Jai and Sten feel Your great Love! Give Allistaire grace each day, to undergo the harsh treatment, to stay healthy, to bless every soul she encounters with her sweet spirit. Use her precious young life to reach others. Through her suffering, I pray You will mold hardened hearts into soft clay. That everyone who encounters her life would be turned to You. What a miracle that would be! God, grant this family endurance through these hard days and long nights, a strong spirit that never gives up, wisdom for each decision, unity with each other in the midst of the pain, and a love that is of Jesus, sacrificial and all-encompassing. Lord, You alone are good. And Your love endures FOREVER! Amen.”
Please include Jaron and his mom, Monica, his dad, Brian and his brother and sisters in your prayers.
If you’re interested in knowing more about little Jaron you can click here: Monica’s and Brian’s baby boy Jaron