I watched as they took my guy away for what was supposed to be a simple procedure. I was a few steps back. As they wheeled his bed into the procedure room he started to convulse, or what looked that way to naive me. I stood there in shock as I heard a nurse say, “Uh-oh.” The doctor calmly adjusted monitors. I prayed at this moment she was more than just a pretty face; all her training would now kick... Read more
My sister with Down syndrome isn’t the sister I wanted. But she is exactly the sister I needed. And every family member and friend who knows her feels the same. Over the weekend, Ruth Marcus wrote in her article in the The Washington Post entitled “I would’ve aborted a fetus with Down syndrome. Women need that right” … “That was not the child I wanted. That was not the choice I would have made. You can call me selfish, or... Read more
My husband’s special needs parenting skills have been a gift to our children and me. So today, our family is celebrating the gift of him and his amazing special needs parenting skills on his 62nd birthday. Here are 10 special skills he’s perfected since our first child was born in 1982. Bodily fluids don’t bother him. From pee to poop, from projectile vomiting to fountains of blood, from oozing wounds to regurgitated bile–he took it all in stride from the day... Read more
I run a Facebook group focused on self-care for special-needs moms, and I recently asked them what was causing the most stress in their lives right now. “Worry about meeting my child’s needs now and in the future” was the number one answer. It was no surprise to me. I grew up as a special-needs sibling (my sister has Down syndrome) and I’m now raising a child with special needs (my ten year old has level 3 autism). I was... Read more
On December 31, 2017, CarePages.com closed permanently. CarePages was a free website for patients to connect with family and friends during an illness. The site had been a great place to provide updates for those who wanted to pray and follow the journey. Updates were written from the time of her first seizures in 2004 through the time of our getting on Facebook to update others on her care. CarePages contained over 600 updates about Gwendolyn’s early life and what... Read more
I recently drove with my family to California from Florida. Yes you heard me … we drove. I am not a fan of flying, and I also love to see the country and the unique beauty that God has created in the different terrain. I was in charge of finding us hotels along the way to see our daughter who lives in Los Angeles. I chose one hotel and put the directions in the GPS for my husband who was driving for... Read more
When you heard your child’s diagnosis, some well-meaning friend may have tried to console you with the common Christian cliche, “God won’t give you more than you can handle.” That’s simply not true. Abraham couldn’t handle killing his son. Moses couldn’t handle leading God’s people across the Red Sea. Esther couldn’t handle approaching the king to beg for her peoples’ lives. Daniel couldn’t handle the lions’ den. They were all called to challenges they couldn’t overcome on their own. Pastor... Read more
Care-giving can be and often is a full-time job. While there is often great satisfaction caring for a loved one, some negative outcomes can put the caregiver at great risk as well. By the time we figure out that God has presented us with a challenge that will last a lifetime, we, as the caregivers, are already well into a routine that others think is going pretty smoothly. I say “going smoothly” because a caregiver eventually develops a routine, one... Read more
The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities. While there are still many discoveries to be made along this journey, here are... Read more
As a mother to two little girls with Down syndrome, I need parents of typically developing kids to know something. I have needs. And yes, they may be a bit special because I have “children with special needs.” Parental support from others in this crazy business of raising kids is essential in a mother or father’s life. All too often parents of kids with special needs are isolated because their experience is vastly different from others. It is painful when... Read more
Not Alone: Special-Needs Parenting
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