For the better part of a year I have been posting a series of the Top Fifteen Things New Parents Should Know. These are the things that I wish I had known from the beginning when my daughter was born with Down syndrome 17 years ago. This is the final article in this series. It, and the others, were written to a family who have a new son with DS.
The most important thing for you as new parents of a child with Down syndrome to know is that you are living in the midst of a calling from God. In this final section, we will look at God’s call on the child, on the mom, and finally on the dad.
God’s Call on Your Child
Our Mary was born with Down syndrome in November of 1992. I had not had any prenatal testing (intentionally), so we had no previous emotional preparation for our little baby’s condition. The day had been emotionally and physically exhausting. At the end of the day I was alone, finally, and finally had my Bible which my husband had brought from home. I needed to meet with God. I desperately needed to know what God had to say about Down syndrome. I started flipping around in the Bible. Where in the Bible would I find what I needed? Psalms? Psalms was usually so full of comfort, but it seemed so dry that night. I flipped around some more. I couldn’t recall anything ever in the Bible about this.
So in desperation I went back to where I had left off the day before in my regular daily reading. Exodus. Now, I was sure there would be nothing in Exodus that related to my need that evening. After all, Exodus is all about plagues, and golden calves, and the Ten Commandments. But I had to read somewhere. That evening I started in Exodus chapter four. I only read eleven verses, and I was stunned at what I was reading. There it was, the most definitive passage in the Bible on physical disabilities, and it was waiting for me in my daily reading!
Here’s the situation. Moses is at the burning bush. God wants him to go to Pharaoh, and Moses begins making excuses. “Then Moses said to the Lord, ‘Please, Lord, I have never been eloquent, neither recently, nor in time past, nor since Thou hast spoken to Thy servant; for I am slow of speech and slow of tongue.’ And the Lord said to him, ‘Who has made man’s mouth? Or who makes him dumb or deaf, or seeing or blind? Is it not I, the Lord? Now then go, and I, even I, will be with your mouth, and teach you what you are to say.’” Exodus 4:10-12
Here the Lord is taking responsibility for a “disability.” And He claimed to have made it that way on purpose! My Mary was not a genetic “accident.” She was designed that way by God. God doesn’t see dumbness, or blindness or deafness as a disability at all. He couldn’t see any reason that Moses’ speech impediment should stop him. God promised to not only be with him, but to teach his mouth what to say. Moses’ success in life did not depend on his own skills, but on the God who would be with him.
There were two applications here for my husband, Myron, and me. First we realized that God made Mary just the way she is, with her Trisomy 21 and all. He could be saying to her, “Now go, and I, even I will be with your brain and will teach you what you need to understand.” Mary’s success in life does not depend on her own skills, but on the God who will be with her.
Knowing that Mary has a call on her life from God, leads to a second obvious call on her parents. It is our responsibility to prepare her for what God wants to do in her life. That means that we work to help her reach her physical and mental potential, and yet along side that, we teach her to walk with God and to trust Him in her weaknesses.
To the wife:
Not only are you called to raise and train your son, but as a wife, you also have a specific call. You are called to be the wife of this husband as much as you are to be the mother of this child.
Study that man of yours the same way you study the extra chromosome. Don’t let your womanly nurturing of your child bleed off your womanly responsiveness to your husband. He needs your love—often. Your husband needs you. In this list of “Top Fifteen Things,” I have expressed many ways for you to help your son. Two particular actions are above everything else listed here. You will do the most for your child when you 1) love and respect his dad, and 2) walk closely with his God.
To the Husband:
Recently an old friend, Fred, wrote to my husband. Fred is concerned about the high divorce rate in families with a special needs child. He asked Myron what advice he should give these fathers before they ended up in divorce. Myron replied as follows:
|When Mary was born to us, there was zero possibility that I was going to abandon my wife and family over this turn of events. It wasn’t even an option. But that is not the case for many. Miriam could tell you lots of stories of single moms who are raising their special needs children alone because this is not what dad bargained for. But I can tell you that one of my immediate reactions when we learned of Mary’s condition was that this was going to be a hindrance to my future ministry and a drain on both my time and my money. I had to recognize that as a lie from the devil and deal with it accordingly.
I’ve found that Mary has cost us both time and money, but people are willing to spend both for what is important to them. Mary has not been a hindrance to my ministry but has opened doors to minister in places I never would have been able to otherwise.
I had to learn to view Mary, not as a burden I had to bear, but as a stewardship, an assignment given to me by God, and a challenge. God could have given Mary to some other father, but He chose me. Will I accept the assignment? How will I do with it? It helped me a lot to become actively involved with “working the problem,” instead of bemoaning Mary’s “disability,” working to maximize her potential and let her become everything that God had designed her to be.
I think fathers tend to live vicariously through their children, especially their sons. Every father wants his son to be the next Einstein, or President of the United States, or Peyton Manning. It is quite a blow when he realizes that is probably not going to be the case. It is personal. He thinks, “I am a failure.”
But God says that children are like arrows in a quiver (Ps 127:4). In my case, I was fortunate (blessed) to have a full quiver of arrows to shoot. Ben might be the next Einstein, Caleb could be President, and Stephen might be the next Peyton Manning. Each of my children has their own special task that God has prepared them for and my job as a father is to help prepare them for their mission, to shoot these arrows.
But what about Mary? What is a father to do when he finds that the arrow in his quiver is not as sharp as some of the others and perhaps bent instead of straight? The One who filled my quiver knew exactly which arrows I would need to accomplish my mission. Mary has her own special mission, one that none of the other arrows in my quiver could accomplish. My task as a father is to help her find that mission, prepare her for it, and unleash her to fulfill it. I’ve seen part of that. I know I haven’t seen all of it yet.
Let me distill three things I think all fathers need and can all probably relate to in some measure.
1) They need to decide that bailing out or quitting is not an option.
2) They need to see their special needs child not as a burden, but as a challenge and a stewardship.
3) They need to find ways to live vicariously through their children as they succeed and win victories in their own unique ways.
From the wife’s perspective, I’ll tell you what Myron did that was most helpful. He led. He guided me as we worked the problem. He helped with wisdom in balancing high expectations for Mary with love and acceptance for where she is. During those early years when I was spending 2-3 hours a day learning and networking, he did not begrudge me that time. And finally, he protected me and provided for me and for our family.
Dad, embrace your calling to be a father to your child and a husband to your wife.
God is good. All the time. Walk with Him and let Him give you the wisdom to train up your son in the way that he ought to go.
This post is #1 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.
More about what the Bible says about Down syndrome is here.