Another Change In Our Journey

About this time last year we experienced a change in our journey with Luke's diagnosis of ulcerative colitis/Crohn's. It has been a challenging year to say the least. As many of you know our son, Landen, is extremely small. There never was too much concern from the doctors until a few months ago when his rate of growth did not increase. Our doctor referred us to another doctor that eventually led us to UNC. On Thursday, July 29th we received life changing news that completely changes the journey we were on. Landen was diagnosed with Primordial Dwarfism. We were completely shocked and still are. We were not even expecting an answer that day and certainly not this answer. We actually didn't expect an answer at all. There never has been any concern and all the doctors said he could be little for no reason. Primordial Dwarfism is extremely rare. There are about 100 primordial dwarfs in the world, making the chances one in 3 million. It is actually the rarest form of dwarfism and there are about 200 types of dwarfism. His type of dwarfism means his body is and will be proportionate. There are five or six types of primordial dwarfs. We do not know yet what type Landen has and we may not know for a while. He will start getting x-rays done of his bones when he turns one in January. It will just take time to monitor the growth of his bones before anything can be determined. Because it is so rare there is not much information so we do not know what to expect. That's one of the hardest parts, just not knowing. Our biggest question right now is "why?" We probably will never know the answer to that but we are trusting God's perfect plan. However, it does not make this any easier. It's been amazing how everywhere we turn we see God's hand! We have been encouraged in so many ways and the support of our family, church family and friends is such an overwhelming blessing! Although, we did not see this coming we know God did. To us, Landen is perfect! He is just the way God made him, fearfully and wonderfully (Psalms 139:14)! We are trying to focus on the positive. We do realize the diagnosis could have been much worse. We are thankful that Landen is not sick. Other than being small he is healthy and happy! He has a smile for everyone! He is such a joy to be around! We don't feel worthy to be used by God but we have realized that we have been entrusted with Landen. Luke and I were chosen to be his momma and daddy! We have adopted the following verse to be our family's verse: Romans 8:18 "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." This is our hope! I just imagine God is hurting with us but at the same time I know He sees the future and knows all the good that will come from this. He is preparing us for something greater than our circumstances and God can use us in ways that would have been impossible before now. In fact, we've already had a glimpse of that. Just 4 days after the diagnosis we were out eating lunch and we met a family with a 15 month old son with dwarfism. They live in the same town we do! Now that's a God-thing. There is no other way to explain that. We plan to keep in touch with this family and we have a strong burden to share the Lord with them. This would not have been possible before. We appreciate every word of encouragement and every prayer that has been prayed. We would appreciate continued prayers for us as we embark on this new journey.