How do I “do life” with a severely-handicapped child? Sometimes I do it well, sometimes not…but I always have the assurance that I do not walk this difficult path alone.
Katie Jo was our firstborn on Thanksgiving Day in 1977, three years into our marriage. She will be 32 in November. Our sons are 29 and 27. Katie Jo (KJ) is severely handicapped with cerebral palsy (from birth), unable to speak (with words), sit or walk. She has a seizure disorder, a feeding tube and is microcephalic. Her sleeping for the first 27 years was sporadic at best.
This probably sounds pretty overwhelming but let me fill you in on what KJ has going for her: Since April of 2005, after being on whey protein for several months, KJ began sleeping through the night. Now it is rare if she doesn’t sleep through the night! What a huge blessing this has been!! Katie Jo also has the best smile (and giggles) in the world (okay, I’m a bit biased!); she has a very sweet nature, taking in everything going on, maintaining eye contact with her bright eyes, responsive to everything around her at (we believe) at least a 6-year-old level.
God graciously provided a ceiling lift in our home in October of 2001 so we can move our sweet 70 pound bundle from wheelchair to couch to mat on floor to bathtub. This is just one example of the numerous ways our amazing God has provided for our needs over all of these years. I cannot imagine doing any of this without God’s help, through various doctors, nurses, family, friends and even sometimes through people we didn’t even know! Jesus has walked with us every step of the way, whether we always acknowledged that or felt it. He is always trustworthy…and full of grace. And He keeps teaching me things about my mothering.
You see, I didn’t struggle that much with KJ’s cerebral palsy as a mom because it gave me more opportunities to nurture, to care for…but this wasn’t as true for our boys, who have suffered from intense worry and fear, as they were processing things from a child’s perspective. Wow! God opened my eyes through a book I was reading, then through Bible study questions in CBS, then through a trusted Christian counselor, who helped me write a letter to our grown sons in which I asked for forgiveness for ignoring or not seeing or discounting their fears in those early years, which led them into such pain as young men. With the Holy Spirit’s help, we have all experienced a lot of healing, which continues to this day. God has taught me that “stuffed, unexpressed feelings” do not go away (no matter how strong your faith)…they must be dealt with, which involves work and pain and tears.
As for Katie Jo, she is pure delight! We believe she is the most spiritual among us. God has shown us in various ways how He is ministering to her, which gives us such comfort. Her smiles light up our darkest days! I often talk with her about the ministry that she has…a ministry of smiles and joy and prayer. KJ knows that Jesus hears every prayer she voices (inside). I tell her that Jesus made her beautiful on the outside and on the inside (in her heart). My husband, John, is amazing with KJ; he is totally involved in her care, which is a huge help to me.
One thing I (we) have learned over the years is to ask for help…and to graciously accept it. That’s what the Body of Christ is all about…whether helping or being helped, both experience the blessing of God. If we had not accepted help, I tell people I would probably be sitting in a corner somewhere in tears. God never intended for us to go it alone; we need each other.
My best lifeline for “doing life with a severely-handicapped child” is being involved in Bible Study on a regular basis. I have been involved with Bible Study Fellowship (BSF) or Community Bible Study (CBS), both of which involve reading the Bible, answering questions, sharing your answers in a small group and listening to a lecture on the material. What a lifesaver to have the prayer support of the wonderful women in my group!!
It is important not to neglect your spouse, either. It’s good to “play together” as well as to “pray together.” John and I have found that it is hard to stay mad at each other when we pray together! We are also involved in a small group at church which has been a place to be real, transparent and safe…truly a treasure.
Life is complicated…and more so with KJ’s special needs. I’m not saying it’s easy (at all) but we have found our life to be rich in God’s grace and full of joy amidst the sorrow.