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Josiah may be gone from us, but he lives on in our hearts. I so enjoyed writing about his life that I have continued to write, also about Jacob's life. I have decided to occasionally post a thought, simply to share the joy of our boys.
Jacob Hohua July 12, 2003-April 19, 2004
Josiah Ngapuhi June 8, 2007-July 19, 2007
Josiah is our sixth child. He is preceded by Mariah, Tahlia, TaiNui, Jacob, and Sydney Pai. Nothing makes us happier in life than our children! We have always wanted a big family with lots of kids.
Jacob is our fourth child. When we were pregnant with him we learned that he had severe hydrocephalus and very little brain tissue. We were told that he would probably have to be institutionalized because we wouldn't be able to care for him. We were devastated. But, we know the power of faith and prayer, and with the help of our extended family, we fasted and prayed for a miracle, that he would be healed. After he was born we learned he also had muscular dystrophy, he had a cleft lip and he was blind. He couldn't suck or swallow and he hardly moved his body. We still prayed for our miracle which proved to be spiritually exhausting. None of the doctors could tell us why he was sick. Finally at five months he was diagnosed with Muscle-Eye-Brain disease. It is an extremely rare autosomal recessive genetic disorder with an average life expectancy of nine months. We learned that we were both carriers, that 25% of our kids would have MEB, 50% would be carriers and 25% would be unaffected.
Again, we were devastated. Not only was our son not going to get better, but he was going to die. We were spiritually exhausted and wondered if we just didn't have enough faith to realize the miracle. However, we found comfort it Jacob's life. By this point he was relatively healthy and his life was very rewarding for us and for our children. He added a sweet spirit of love to our home that was unique to him. We clung to him and hoped for the best.
At nine months and one week Jacob passed away. This was a dark time of emptiness and loneliness. Words cannot express our grief. Through our journey to understanding we finally accepted that this was God's will for Jacob. Heavenly Father had heard our prayers, He still loved us, and His will had been done. Through the Atonement of Jesus Christ we found the peace and comfort we so desperately needed, our hearts were healed. But it still left us in a terrible place. We wanted more children, but the thought of having another sick child was terrifying. We were at a cross roads: Would we stop having children because we were afraid or would we go forward with faith? After more thought, prayer, fasting, and Temple visits we gained enough spiritual strength and understanding to trust Heavenly Father. We would be willing to do it all over again for the chance to have another child. We were blessed with our Sydney Pai who is truly a gift.
As she got a litttle older, our family still didn't feel complete. Knowing that we may have another sick child we chose to have another one. We found out at 16 weeks our Josiah would have MEB. And this began our journey with him through life.
We don't believe our genetic disorder to be an accident or a mistake. We believe it is God's will for our family and for the sweet children he sends us. We believe our sons with MEB will be worthy of Heavenly Father's greatest gifts and we welcome them into our home.