An article was forwarded to me by a friend today. It was a thank you note to parents of children with special needs and there was a part of that article/letter that stood out to me and made me think a bit more about raising Jordan.
I thank you, special needs parents, for your tireless attempts to wrestle with your own conflicting desires. On the one hand, you want the best possible support for your child in their battle, finding the best schools, the top techniques, and the latest research to justify special treatment. On the other hand, you strive to normalize your child and his surroundings, never allowing your child's special needs to rob them from the joys of "normal" life, nor excuse them from the painful lessons that life has for all of us. Those of us without special needs kids face this same internal battle, wanting to both protect our kids from life's dangers and yet expose our kids to life's lessons. For showing me how to fight this battle on both ends, equally holding up both protection and exposure as valuable, I thank you.
Special Needs, Special Love
Hal Runkel, LMFT
I can relate so well to this author's description of "conflicting desires" for children with challenges. As put so clearly above, we want the best of every opportunity for Jordan which often means exhausting effort fighting insurance companies, persuading doctors, constant therapy, financial strain as a result of exorbitant medical costs and equipment, etc, etc. At the same time we do indeed want her to live a “normal” life of park dates, quiet family time, having friends, swim classes, dance classes, and other fun things typical kids do.
Even beyond this it brings to mind something I was sharing with a mom at work just today. This is a mom whose son was born with microtia and atresia (malformation of the ear). He is a child on my caseload and when he’s about six he will have a series of surgeries to create an ear. She was concerned with how to respond to various aspects of surgeries in regard to her son having the surgery and also his brother. I was able to share with her that God has absolutely allowed this event/trial in her son’s life and that, as a believer, He will sustain her and provide her with everything she needs. I told her about Jordan’s insanity at doctor’s offices that came as a result of surgeries and that during her times of fear and worry I would explain to her that we are not to be “anxious in anything but in everything by prayer and petition present our requests to God and the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus.” (Phil 4) I would pray with Jordan before, during and after doctor’s visits and eventually she would ask for prayer. After one big surgery she was fearful and in pain and asked for me to pray with her every five minutes or so. Here is where the “conflicting desires” come in (as the author talked about above). I’m sad for her trials but at the same time I fully understand that without them she would not be forced to lean on the Lord for comfort. Although she is not saved she already has, at two years old, an intellectual understanding of God as comforter, healer, provider. For all of that I’m thankful for her affliction. Her challenges have given me an opportunity to demonstrate what it means (in good times and difficult) to live for Christ and to fully trust in God’s sovereignty (if He were not indeed loving He would never have sent His own son to die on our behalf!).
As the author talks about two “conflicting desires” of wanting to protect our children yet expose them I’m able to say that by God’s grace I am thankful for what He has exposed Jordan to because of what it offers her and the rest of our family as well as those involved. I feel for her when she’s in pain or when common daily tasks are a struggle but I’m also thankful for so many rich experiences that directly send her to our Heavenly Father. When I think of it from this perspective it's really no conflict at all.
So in the spirit of refurbishing I've recently taken up arms against stained clothes. I can't stand to throw away cute clothes and Jordan is CONSTANTLY staining her clothes. We jokingly call her Pig Pen (Peanuts cartoon) as she is constantly dirty and dragging her even dirtier blanket around with her.
