It's been over two years since God spoke to my heart about the little boy who we call Caleb. I looked forward for two years with such great anticipation to this purpose and this plan that my Father told me about. I waited with sometimes a great lack of patience, but mostly a heart full of hope for whatever this is that God is doing. Now I see him. I hold him. I kiss his face and tend to all his needs. I love him more than I ever EVER thought I possibly could. His little smile reminds my heart of the joy that is found in being in the presence of the Lord and living in His will.
But this my friends....IS hard. Like putting Moses in a basket hard. Because I don't know where God is taking Caleb. I don't know what is to come or where we are heading in this life. There are things I'm afraid of , things that I worry about. Not that I should, because the Lord has given me a spirit of power, love and a sound mind....not of fear. But I'm also living in an imperfect world where the prince of darkness has access to me and I allow his thoughts to become my own at times.
Everyone loves this precious baby and everyone asks how he is doing. Usually I just smile and say that he's doing great, because he is. I mostly keep the hard stuff to myself or my closest friends because there is just too much to explain in a 5 minute conversation. I realize however, that many of you have invested so much time praying for our boy and even helped us to bring him home financially and I want you to have the truth about what we know so you can continue to pray for him, and for us. We need your prayers. Not just so that we can face this hard path physically, but emotionally and spiritually as well.
As most of you know, Caleb was born with congenital Cytomegalo Virus (cCMV). If you would like to read more about it you can do that at www.StopCMV.org. If you are of childbearing age, I highly recommend you read about this virus and discuss it with your doctor. Caleb was also born severely drug addicted. We continue to wean him from a drug called Phenobarbitol for this reason. Due to the CMV, drug abuse, and possible trauma during pregnancy, Caleb has some major things going on. He was born with microcephaly (small head), blood problems which have resolved, and for lack of a better word, brain damage. The ultrasound of his brain and CT scan soon after birth confirmed that he has calcifications (tiny white spots) on his brain. The brain is so complex that they really cannot offer us any future expectations. Many children with cCMV never walk or talk, but many do. When we said yes to Caleb, exactly 6 months ago....we knew that we were getting on a boat with a completely unknown destination. But we knew that God was in that boat so we jumped on.
As we got to know our new baby and watched him grow, at first it seemed that he was going to be the exception to the rule and not have many effects. Many of you have been wondering this as well, I know. He smiles at you in the halls at church and seems to be doing wonderfully. He IS doing wonderfully. Here are the concerns, though, that have shown up in the recent months. These are not a surprise to God. He holds healing in His hands and if His plan for Caleb is for him to walk, then he will walk. If his plan for Caleb is for him to preach, then he will preach. As of now, Caleb is delayed on all his gross and fine motor skills. His trunk support and muscle tone are weak. He feels more like a 3 month old baby in our arms than a 7 month old. He prefers not to bear weight on his legs, but is progressing. He is learning to sit and progressing slowly but surely. He loves to smile and laugh and can be very engaging (especially if you are blond and female....), but I notice that he avoids eye contact many times. He can be fixated on his hands, lights or playing with his hair. All things adorable, but my discernment says these things are in excess. He does not open his mouth for solid foods. Recently, he has started having spasms that the doctor is concerned are seizures. I honestly do not think that they are seizures, but we will be seeing a neurologist as soon as they can get us in. He is farsighted, but otherwise his vision is great. His hearing is perfect (which is a miracle in itself with CMV).
Please pray for us to have wisdom about Caleb's treatment and care. I tote him to many specialists a month and we are engaging in physical, occupational and speech therapy on a weekly basis (OT and ST begin soon). School starts in a couple weeks as well so I ask for your prayers as I incorporate a baby into our homeschool day, along with the extra appointments and such. Thankfully, Caleb is a very sweet, easygoing baby. Our children have learned so much from this journey already, and the journey has only just begun. Their responsibility, helpfulness, and love for those with special needs astounds us. God has begun a good work in all of us, and we know that He is faithful to complete it. There are also some really cool ministry opportunities with photography that I am looking forward to as well, so pray with me as I navigate the many rolls I am blessed to have.
My good friend Jackie spoke at church camp this past weekend about the coxswain in a rowing boat competition. The coxswain is the one person in the boat facing the finish line, yelling directions and encouragement to the other rowers who have their backs facing the goal they are moving towards. Jesus is my coxswain. I cannot see the goal or the finish line, as it's behind me. I'm keeping my eyes on my prize. Jesus IS my prize. At the end of this race that leads to nowhere known to me, I will see Him face to face....and it will all be worth it. The world behind me, the cross before me. No turning back. No turning back.