Joshua's Story After months of anxious preparation, the day finally came that Joshua decided he was ready to be born. As our little 6lb 8oz son rested on his Mommy's shoulder, we gazed into his beautiful blue eyes, and admired his long fingers. What a beautiful gift from God, new life is. Only a a few short hours later however, the pediatrician gave us some devastating news. Our son was having seizures and difficulty breathing, but no one knew why. All the tests during the pregnancy had been perfectly normal. No one expected this and the doctor was as shocked as we were. Our hearts trembled as we quickly called our church's prayer team, as well as other family and friends. Prayers went up all around the world for our little boy. Joshua's entire next month of life was spent in the Neonatal Intensive Care Unit of a hospital downstate. He was finally diagnosed with Cerebellar Hypoplasia. His cerebellum had not fully developed, as well as he had a fluid filled cyst occupying the space where his cerebellum should have been. We were devastated when they told us just how grim his situation was. Our little boy might not make it out of the hospital. As we cried out to the Lord in our anguish, He comforted us with the words of Psalm 139. Joshua was just the way He had made him...perfect. If he only lived a few days then that was what God had planned. We sat with Josh each day and sang to him, praying to God that we could be together as a family. Our prayers were answered and we took Joshua home with us on February 15, 1999. He had to be fed by a g-tube in his belly, but required no oxygen or monitors. What a wonderful homecoming we had when we arrived and discovered our house was filled with diapers and baby things from loving friends. The Lord miraculously supplied our needs while Joshua was in the hospital and He continued to his entire life. Josh's first months of life were far different than those of most children. He had therapists in to see him almost on a daily basis. We travelled from one doctor appointment to the next. He was a very mild tempered little boy however, and the trips didn't bother him. He bounced along in the car, enjoying the scenery from his back seat vantage point, holding his friend, Baby Big Bird in his arm as he went. One sunny day, when Mommy, Daddy and he decided to go for a walk in his "buggy," he did discover that although he enjoyed being outdoors, there was something he didn't like...the SUN!!! We thank the Lord that his Early Intervention Specialist, found some baby sun glasses for him. Due to his CH, Joshua's eyes were bothered by anything too bright. So, he became known around his home town as the guy with the "cool dude shades". The sunglasses did the trick and he and Big Bird were out and about in his buggy, loving life once again! Mommy and Daddy were taught many therapies to do with Joshua each day. He received physical therapy, occupational therapy, and speech therapy on a daily basis. As part of his speech therapy, we tried to find things that he would allow in his mouth. He was very orally defensive to anything in his mouth and most tastes, textures, and temperatures appeared stronger to him than the rest of us. Finally, we found it...orange Dum Dums! Boy did he like them. Because of his CH, Josh would easily choke, so we had to be careful to only let him have a few licks before taking them away so he would swallow. No doubt he'd have licked down the whole thing if he could have! Joshua tolerated his therapies, but it was obvious he wasn't real happy about them. They were good for him, but he didn't enjoy being stretched and moved. In addition, his skin was defensive to other people touching him. So, some friends of ours bought us a class on baby massage. Isn't it amazing how the Lord knows just what we need and provides it before we even know what our needs are? Needless to say, Joshua absolutely LOVED doing baby massage with Mommy. What a relaxing time for both Josh and Mommy after the hectic schedule of most of his days. One of the challenges Joshua faced was that because the cerebellum controls all motor skills and coordination, he wasn't able to move his arms and legs much at all, nor was he able to sit up or hold his head up. It was exciting when he would move his hand slightly to point at a toy. So, one of our challenges was to find toys that he could make do something. At the time, Mommy belonged to a list on the internet for Christian Parents of Special Needs Kids. One of the other Moms suggested the "astronaut toy". It required only the slightest movement to make it play music. What a joy it was the first time we heard that toy saying "3-2-1 Blastoff..." as Joshua was laying in his playpen and we were in the next room. He had done it by himself! We were also elated when Joshua began to make noises. He discovered he could make people laugh when, at the most appropriate times, he'd sigh with a big "Hmmmmm." What a character he was becoming! Then he figured out that he could really make Mommy get excited when he put all the sounds he'd learned together to utter his first "word".... "HmmmmmBrrrrrrrGrrrrrr." Josh had quite the personality. He was very easy going, and we said he had a lot of charisma. Yet, we believe that it was God's love being shown through those innocent little eyes that attracted people to him. His Daddy does pulpit supply for area churches and even during Josh's colicky stage when Mommy would pace the back of the church with her crampy little boy while Daddy preached, people loved having him in their church. He simply brightened other's days and showed the Lord's love. Church was actually one of Josh's favorite places to be when he was little. He absolutely LOVED the music, especially worship choruses. Sometimes he'd even "sing" a little...but usually he saved his "singing" for the Pastor's sermon time! One Sunday he even got to make his debut, when all the men of the church were called forward to sing. He accompanied his proud Daddy to the altar (but of course then he didn't sing...just enjoyed the attention!) Although Joshua didn't progress as quickly as the doctors would like to have seen, we viewed each progression (no matter how tiny it might be) as a gift from God. Afterall, the doctors had not given us a hopeful outlook for our little man. We didn't have any preconceived goals of what he should attain, just to help him attain whatever goals he was capable of. On October 2nd when we put our little man to bed, we had no idea what the next day would bring. We awoke the next morning to find Joshua very ill. He had laryngitis and a bleeding ulcer. An ulcer can be a result of having a g-tube. Again, we called our faithful prayer supporters as we had done so many times in the past. The next month of Josh's life was spent in hospitals. Things continued to worsen as he developed three different pneumonias and then a very rare disorder called Hemolytic Uremic Syndrome. To complicate matters, over the course of the preceding two months Joshua had developed a heart difficulty that now progressed from an irregular heartbeat to a complete heart block. The syndrome was very painful and Joshua was exhausted, but his blood work showed that the syndrome had actually been cured. We were excited, yet looking at our son, all swollen and pale, with such a weak little cry, we knew that he was not out of the woods. While we were downstate with Joshua in the hospital a local Pastor had stopped by to see us, and we began to attend his church on Sundays. Once again, God had provided a church for us to attend while away. Each Sunday, we heard messages about Heaven and what our Heavenly bodies would be like. We didn't know at that time that the Lord was preparing us for the most difficult time of our lives. The dreaded phone call came one morning. Joshua was very sick and the doctor, who we knew to be a Christian, wanted to talk to us right away. Having just been taken off the ventilator the day prior, the doctor somberly informed us that in order to survive Joshua needed to be reintubated. However, in all good conscience he could not reintubate Josh without talking to us first. He knew we believed that life here on earth is not the end of the line. If reintubated, Josh most likely would never come off. He was having many complications and the doctors believed he would also need a trach, a pacemaker, and most likely dialysis. The HUS had affected his already tiny cerebellum, and it appeared that it was shutting down. That morning, he sat down with us and the three of us came before the Lord in fervant prayer. What should we do? Through the Lord's guidance it became clear that the best thing for Joshua was not to put him back on the ventilator. It truly was the most difficult decision of our lives. His life was in the Lord's hands. As Mommy and Daddy took turns holding Josh that day, we were able to tell him all about Jesus, Heaven, and his Heavenly body he would soon have. Somehow it comforted us to be able to prepare him. God had given us what we needed days and weeks earlier in those sermons. Our Pastor made the five hour journey to be with us as Joshua passed away. As Mommy held her "little man" and rocked him, he passed from her arms into the arms of Jesus. We cried that afternoon, knowing our lives would never be the same without Joshua, yet we knew that he had been given a life free from sorrow and pain. We are in anguish over the death of our little boy, and miss him more than words could ever express, yet we are so thankful to God that we have the assurance that he is in Heaven with Jesus, and that we, as Christians, will again see him! That is what keeps us going from day to day...memories of our little boy, and our trust in the Lord Jesus Christ.
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