Hi! So glad you stopped by! If you are here because of Kelly's SUYL Special Needs Families I hope you will be encouraged to see what the Lord has done in my life as a wife and mom of two fantastic kids, one of whom is disabled. John Mark is pictured here with his new puppy, Gia.
Our son, John Mark, is a 27 year old young man who loves contemporary Christian music and going to his favorite bands' concerts; he never wants to miss church on Sunday, and is a faithful fan of his favorite sports teams: the Chicago Cubs, the Chicago Bulls and the Green Bay Packers. Plus, he is a true extrovert...he loves to be out doing something with people...going to movies, restaurants and youth group. And, he has a solid faith in the Lord!
He was also born with a genetic birth defect, called DiGeorge Syndrome, that includes Spina Bifida, hydrocephalus, autistic tendencies, and ulcerative colitis. These terms are unfamiliar to many, but to him, they are just a part of who he is.
His whole life has been filled with a variety of surgeries, doctors visits and medical procedures. But several years ago John Mark faced the biggest challenge of his life. We had just moved to the Chicago area where my husband is pastoring a church. After completing four years of high school, John Mark was ready to get a part time job here in town. His health was good and we were looking forward to settling into our new life here.
But soon John Mark's health started to deteriorate and he was diagnosed with ulcerative colitis. Within a matter of weeks he developed a rare infection called toxic megacolon and needed emergency surgery to remove his large intenstines. He was in ICU for 6 weeks, in the hospital for 12 weeks total, and then spent the summer in rehab. It has taken him awhile to recover from all of this, but it is worth it...he is here and he is doing well...but this latest surgery has left him with the need for full time assistance with his medical care, which now includes an ostomy bag.
My life has also changed as a result of all this...I have chosen to be John Mark's full time caregiver, being with him to help him do things he is now unable to do for himself. We are so grateful to the Lord for providing for all of John Mark's needs and for preserving his life for the purposes He has in mind.
Our son, John Mark, is a 27 year old young man who loves contemporary Christian music and going to his favorite bands' concerts; he never wants to miss church on Sunday, and is a faithful fan of his favorite sports teams: the Chicago Cubs, the Chicago Bulls and the Green Bay Packers. Plus, he is a true extrovert...he loves to be out doing something with people...going to movies, restaurants and youth group. And, he has a solid faith in the Lord!
He was also born with a genetic birth defect, called DiGeorge Syndrome, that includes Spina Bifida, hydrocephalus, autistic tendencies, and ulcerative colitis. These terms are unfamiliar to many, but to him, they are just a part of who he is.
His whole life has been filled with a variety of surgeries, doctors visits and medical procedures. But several years ago John Mark faced the biggest challenge of his life. We had just moved to the Chicago area where my husband is pastoring a church. After completing four years of high school, John Mark was ready to get a part time job here in town. His health was good and we were looking forward to settling into our new life here.
But soon John Mark's health started to deteriorate and he was diagnosed with ulcerative colitis. Within a matter of weeks he developed a rare infection called toxic megacolon and needed emergency surgery to remove his large intenstines. He was in ICU for 6 weeks, in the hospital for 12 weeks total, and then spent the summer in rehab. It has taken him awhile to recover from all of this, but it is worth it...he is here and he is doing well...but this latest surgery has left him with the need for full time assistance with his medical care, which now includes an ostomy bag.
My life has also changed as a result of all this...I have chosen to be John Mark's full time caregiver, being with him to help him do things he is now unable to do for himself. We are so grateful to the Lord for providing for all of John Mark's needs and for preserving his life for the purposes He has in mind.
Now that you know a little about us, I would love to learn more about you and the special needs child/adult in your life. How has that child changed you or how you live your life because they are in it? I look forward to hearing what you have to say!
2 comments:
what a great story of God's faithfulness!
Hey there! I found your blog via Kelly's Korner. We are in the process of adopting a sibling group and the older sister has DiGeorge. She has a very mild case of it but due to years of neglect we are dealing with learning disabilities. Thanks for posting!
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