What a day! The day that some in the world have seen fit to extol the virtue and value of the lives of those with Down Syndrome. You can count our family in on this day. There is so much that comes to mind for Tamara, myself, and Eli’s siblings that highlights our appreciation and gratefulness for Down Syndrome.
Our other four children adore their big brother. Noelle (13) is often the recipient of, “Noelle, you’re so pretty!” from Eli when she dresses up for church or other events. Abe (8) can’t sleep if Eli isn’t in the room with him. Evangeline (5) loves him because he’s funny and often taunts him to tickle her. Naomi (3) often says, “Eli, I love you! You’re my favorite brother!” – not that we encourage favorites but she is just expressing in her own way how special he is. Our kids get it. They get it in a way that most don’t or, even, can’t. They experience disability as a prominent, yet no primary, thread in their lives. Down Syndrome has a shaping influence on them.
Over the course of the early years of our journey with disability in the context of raising a growing and young family we often wondered what the impact of Eli’s life would be on his brothers and sisters. Would they love him wholeheartedly? Would they be ashamed of him? Would they defend him? Would they harbor some bitterness toward God? There are many other questions that can flood the mind of a parent in the midst of disability. A parent’s response to the ongoing challenges brought on by a child’s diagnosis directly impacts every relationship in the family. Not the least of which is the relationship to the other children. Poor responses can lead to isolation of the siblings and bitterness within them. These are fearful things that I am quite sure every parent of a child with special needs has battled with and wanted to run from.
By God’s grace over the last couple of years we have been able to see, hear, and experience the impact that Down Syndrome has had on our children. Our children LOVE Eli deeply. When Eli returns from traveling with me they are overjoyed to welcome him home. When Eli has had various physical struggles and is not himself due to pain or the like, they are saddened and concerned ready to help him. They have never been ashamed of Eli, but they have been embarrassed by his antics (he loves to have fun and be silly!). A healthy, “normal” kind of embarrassment. They have defended him against ignorance of his special needs in righteous yet firm ways.
There are so many little ways that their character and worldview has been impacted by disability. They recognize the special needs of other children quickly and respond with compassion. To overhear your five year old trying to teach a boy with significant developmental disabilities and severe hearing loss her idea of sign language is moving and humbling. For our now 13 year old to have been volunteering at our ministry events for the last few years because she wants to, not because she is expected to, is amazing. My point is not that our kids are such perfect little people. My point is that God in His massive displays of His glory in the lives of those experiencing disability has moved in our family in powerful ways to show us more deeply our need for the Gospel and the importance of living that out.
Earlier I mentioned that disability is prominent but not primary in our family. Meaning that disability is obviously in our midst, but Jesus is primary to our existence as individuals, a family, and the Body of Christ. A real mercy to us has been seeing their childlike understanding that our sovereign, gracious, and all-powerful God has intended Down Syndrome for our good and God’s glory. We know that we have a long way to go in our parenting, but it has been a great encouragement to see that disability has not served as a wedge between our children and the character of God. No, far from it. Down Syndrome, and disability in general, has been more of a fulcrum with a lever gloriously weighted towards the goodness of God manifest even in the most broken of lives.
So on this day our family stands blessed, changed, and more like Jesus (with a long ways to go) in part because he knit Eli together in his mother’s womb with Down Syndrome. Thank you, Jesus!
I will also shamelessly plug that this boy, Eli, wants to trek to Mt. Everest Base Camp with his Daddy so more people like him can hear about Jesus, and he needs your support to get there. Watch the video below, go to the site, and show Eli some World Down Syndrome Day loving generosity!