While I was pregnant with him, Mike and I had no idea that God was fearfully and wonderfully knitting him in such a special way, that it would cause us to cling to Him for dear life. How sovereign He is. It didn't even start with my pregnancy. It started many many many years ago. God gave Mike and I, our parents, their parents, their parents, and their parents (etc.) the genetic make-up that would allow Marcus to be born with his condition. And God sovereignly brought Mike and I together to wed and have children of our own. So here we are.
Without a doubt, this past year has been the hardest of our lives. We've had to face so many inner demons and so many fears as parents. We've had to re-learn our roles in our marriage and wrestle through what we really believe about God. We're thankful. It wasn't a year that was all about nap schedules, diapers, and which baby bottles to buy. God gave us, through Marcus, the opportunity to lay down our idols at the feet of God and say that Christ is better than everything.
It's still so hard. It's still hard to be content with God's will because we so desire the best life for him. We're fearful of the future. Will he ever walk? Will he learn? Will he talk? Will his kidneys or his retina fail on him? Will he suffer emotionally as well? Of course, we would do anything to ensure a "normal", healthy life for our son. But at the same time, we wouldn't trade this hardship for an "easy" life. God has brought us so much blessing and joy despite the difficulty. It's such a good place to be.
We're thankful for SO many things. Marcus is the happiest baby in town and his smile just lights us up. He is responding to therapy and is making some strides physically. His vision is also great. Although he is unable to control his eye movements 100% of the time, we see that he is able to perceive everything visually. What a praise! Our therapists are awesome and they totally care for Marcus. Audrey has also been a super trooper. She loves to go to the doctor appointments because she gets to play with the toys there and gets a lollipop after. She also cooperates during Marcus' therapy sessions and sometimes even helps out as the therapist's assistant. She never complains about the care we need to give to him on a daily basis. What a joy that is! On top of our kids, our marriage has been a testimony of God's grace. We've really been knit together in our hearts during the trying times and we've both learned so much about one another and the Lord. I praise God for our marriage.
We've got 1 year under our belts and Lord-willing, it will be a long road ahead. When I think about having to persevere, it overwhelms me. But when I think back on all the grace God poured out to us this year, and the grace He is giving today, I'm encouraged that He will continue to give us His grace tomorrow as well.
Thank you, readers, for your persistent and loving prayers for Marcus, and your care for our family. We've experienced much grace through many of you. If you could persevere with us and continue to pray for Marcus, it would be such a blessing to us.
Updated prayer requests:
1. Marcus' health: Pray that Marcus will continue to get stronger physically. Pray that he will process sensory information well so that he has a greater capacity for exploring and "playing", as this will motivate him with his motor skills. Pray also that his kidneys and retina will remain healthy.
2. After doing some research, we feel that his diagnosis may fit more with a subgroup of Joubert Syndrome called Cogan-type Oculomotor Apraxia. We are looking to see a different neurologist soon, who may be able to shed more light concerning this diagnosis. Pray that what we would learn would bring clarity and encouragement.
3. For Audrey: Pray that the care we need to give to Marcus would not be a burden to her. Instead, that having Marcus as her brother would only produce more grace in her life. She has been such a blessing as we're caring for Marcus. We praise God for her.
4. For me and Mike: Pray that we would daily abide in Him and daily find our sufficiency in Christ. Also, that we would not waste this trial, but honor the Lord in it.
