My oldest son is a miracle. When he was born in 1992, doctors diagnosed him with a chromosome disorder and gave him less than a week to live because of the severity of his disablities. Now, he is 17 years old. He is missing 75% of his brain which causes him to be profoundly mentally retarded. He is spastic quadraplegic and has a seizure disorder. His immune system is compromised, he has severe asthma, and has nearly died, more times than I want to recount, from pneumonia. He doesn't sleep without being heavily medicated, and wakes up several times a night crying. He is medically fragile.
More importantly, he is a blessing to anyone who is willing to get to know him. Special needs children are not useless or a waste of resources. Their lives are precious and add significantly to the joy and pleasure of life. They are not a mistake or a freak of nature. They, like the rest of us have a place at the the table of the Lord. Although Jared has never spoken a word, he shares a deep love with his family, nurses and friends. His eyes twinkle and his smile melts away tension.
My son is a spiritual being. When we have praise and worship times at our house on Sunday nights, Jared becomes animated and coos loudly. He watches everyone as they worship. He participates to the full amount that he can and I am sure God touches him during our worship time together. Of all the people in the room, he is the least affected by sin and I think, he is the closest to God. Sometimes his delight during worship cannot be contained and it is fun to watch him enjoy God's presence.
My life is blessed daily by him. The pain of having him has caused my wife and me to be more sensitive to other's pain and has deepened our search for God. We constantly have to ask God for the strength to make it through the day, especially when we have stayed awake all night ministering to him. My other two sons are sensitive to special needs children at their schools, befriending and helping them. My sons have a deeper sense of value than their peers and they aren't afraid of standing up for those who have no voice.
Jared has spiritual gifts; the gift of faith, love and comfort. People are drawn to him, drawn to touch him and talk to him. He gives people his full attention and most walk away knowing they are loved and valuable....all without him saying a word to them. The Spirit surrounds him. One of his nurses came to Christ after being around Jared and my family, experiencing our unconditional love for her.
My wife and I decided from the beginning he was going to live with us, despite the physical and emotional hardship it has been on our family. Why? He our son, pure and simple. God made this boy and we decided to raise him to see what his potential could be. Our lives have been forever changed and blessed by him, each difficulty bringing strength, each pain turning to joy, each trial bringing perserverence.
The Bible says the kingdom belongs to "the least of these." I have been given the rare privilege of being the father to a special needs child. I don't know what I did to deserve such a blessing...I guess it is just grace. But if you are given the opportunity to be around one of these special children, rejoice and enjoy being near someone who is constantly near to the heart of God. Give them an opportunity to use their gifts and serve in whatever small way they can. Peace.
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Very inspiring. Thanks for sharing this.
ReplyDeleteWhat Terry said: inspiring. Thanks for sharing this.
ReplyDeleteAwwww, I love Jared already! And the Lord placed him in a very special family as well! -_^
ReplyDeleteBless His heart, and all your hearts too!
Dear Chris,
ReplyDeleteAs a nurse for going on 5 years in your home and having supervised over 25 such homes in the last 10 years, I have learned a great deal about family dynamics in such situations!
1. The first and very sad glaring reality is that in far too many instances the Dad after a few months or years leaves/bales. He can't/won't take the demands a special needs child requires on his wife, family and finances.
2. Often, if the family doesn't split over a special needs child, they go to the opposite extreme and the special needs child becomes the center/idol of the family's existence with everyone walking on eggshells, tip-toeing around. Mainly the child's T.V. programs are watched and the other children's needs always take second place. This leaves them feeling a combination of guilt and resentment. Guilt because they feel bad about resenting all the attention the special needs child gets that they also want, need and deserve. Life becomes perfunctionary, and just going through the motions for these siblings and they often find their joy and worth outside the family and sometimes through destructive lifestyles.
3. What I have seen in you guys is an amazing balance. You love Jared to death, but enjoy life to the fullest with you other boys, taking family vacations and developing them athletically, musically, academically, and spiritually. You appreciate every day God gives you with Jared, but you haven't put your life on hold until he is no longer with you.
4. Beyond excellent medical and nursing intervention, I believe the reason Jared is alive 17 years past his prognosis is for the fact that he loves being loved by all of you and he has the will to live because he perceives your deep appreciation for him and he enjoys his journey!
Nurse Lori