The following story was written and submitted by Oregon resident Liz Jeffery.
“I wasn’t able to get a good look at a four-chambered heart, but it might have just been the position of the baby,” said the obstetrician in his most reassuring voice. He then referred me to Emanuel hospital in Portland for a more detailed ultrasound, where I was introduced to a pediatric cardiologist. Three months later I gave birth to our beautiful baby boy, who looked pleasingly pink to the cardiologist. Heart surgery could be put off for a while, but the geneticist confirmed Down Syndrome. That was almost thirty-two years ago. Now our son Paul happily leads a satisfying life as he makes good use of the many skills he has developed over the years.
Reflecting on how Paul has come to be who he is, I give credit to the many supports we have received along the way, both public and private. Raising him to his full potential as an adult is something we, his family members, could never have done alone. I can only speak from my own experience, but I am thankful for many good and reliable supports and services that became available throughout the years. While under the umbrella of the federal Individuals with Disabilities Education Act (IDEA) until age 21, navigating the provided services for us was manageable enough, for there was guidance from agencies such as the Department of Human Services and the local school system, beginning right at birth. But after that, we wondered what’s next? Once again we were directed to the help available: a brokerage that works with us to help keep Paul doing what he chooses. But that kind of support was not always available here. There used to be a long waitlist for services and opportunities for adults with DD/ID until, thanks to lobbying efforts by these adults and their families, the brokerage system replaced the waitlisting.
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For us, helpful support services have been from both public and private entities. We have been involved with some non-profit organizations that do a fine job of supporting and including adults experiencing disabilities. These organizations, dependent on financial donations, enhance the lives of these adults in ways beyond what the state services offer. There are some churches and other faith-based ministries that reach out to adults with disabilities, but they are few in comparison to the need. Events, ministries, and programs that enhance the lives of our adult DD/ID population are always in high demand. We are thankful for the ones that are available, but the more the better!
Now that I am in my retirement years, I can testify that caring for a child with a developmental and/or intellectual disability has challenges that are known, in a very personal way, only to those of us who have made the commitment to this journey. The self-sacrifice is for the long haul, and certainly we have had to persevere through some particularly challenging seasons. But the blessings that come out of the hard work far outweigh the difficulties. It saddens me when I hear of the statistics regarding reports of prenatally-detected, alleged disabilities in unborn children who end up being aborted. At times I wonder, as I am out in the community with my son and catch various looks on the faces of strangers, if any might be thinking about their own choices they would make (or possibly had made). But hope and help have always been there for us, even in the most difficult times.
What the more distant future holds I am not yet sure, but, to quote something that my mother used to remind me of, “All I have seen teaches me to trust the Creator for all I have not seen.” My family believes that Paul’s Heavenly Father will provide for him. The supports and services that we have been offered, while not always perfect and ideal, have nevertheless been a blessing and much appreciated. To the pregnant mother who is being faced with the possibility of bearing, raising, and supporting a child with a disability all the way into and throughout adulthood, I wish to say: “You’ve been given a special gift, it will be alright, there’s plenty of help and support out there, and there are moms who are ahead of you in this journey who can relate.” Some of us would be even happy to coach along the way!
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I encourage any parent facing a future of special needs to embrace the journey ahead. It will be hard work but you won’t need to do it alone. Back when Paul was a small child, a friend, after listening to me describe the various challenges we were facing at the time said, “Well, I’m glad he’s yours!”
After all these years since then, I can confidently say, yes, I was, and still am, glad he’s mine!”
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