My daughter, Ronabelle, as I sometimes call her is one of our 5 children. Just over 3 years ago she was born with a hole in her back (skin) and her spine. The common medical term is Spina Bifida. After 3 of the most exhausting, but rewarding years of my life, I have learned more about life from my Ronabelle than anyone else I know.
Most of us take walking around for granted. Ronabelle can commando crawl like nobody's business. She tries constantly to keep up with her twin sister and wants to walk almost all the time. It is time consuming, yet extremely rewarding to hold her hand as she attempts to do what most of us don't even need to think about. This includes going # 1 in the bathroom. My wife and I take turns draining her bladder with a plastic tube 4 times every day. It is second nature to her and us now as we have had to do this every day from when she was just a few days old.
My Ronabelle's smile lights up a room. She is cute as a button, wears tiny little glasses and hardly ever complains. Most of all she works harder than most adults, just to do the basics. Ronabelle, the little peanut that she is, started school (special ed) just last month and loves it.
As far as our needs as parents, my wife and I have always felt that God will only give you what you are capable of handling, and to do the best you can with your given situation each and every moment.
That being said, it sure would be nice to get a little break every now and again. I would love to take my wife on a little weekend get away, because Lord knows she has earned it! But as our loving duty calls, we answer each day with the same love Ronabelle shares with her sweet smile.
Yes, we the parents of children with "Special Needs" do share a common bond; Joy and pain, moments of victory and fear, bravery and angst, hope and reality, but mostly we wonder if it ever gets any better or easier. I guess it just depends on the day. And what do we do? My wife and I pray for help and strength. God knows our joy as well as our pain and perhaps He has a special place for "Special Parents" as well as our "Special Children".