Having a special needs child can be a real mess. Not the kind of mess you would expect after walking into the kitchen only to discover the kids had gotten into chocolate syrup, which can be used as a delicious lubrication on dated 1970’s linoleum, but an emotional mess.
Most days are a rollercoaster: Extreme highs followed by unbearable lows. Moments where you think “Hey a kid is a kid, special needs or not.” There are moments when it's easy to overlook disability and the latest diagnosis. Then there are the other moments -- ones when you are faced with the harsh reality of spoon feeding an almost four-year-old.
One of my writer friends, who also is a special needs parent, said something the other day that just blew my mind. She said, “My daughter is very emotional, very difficult, very rigid. I love her, and it's hard. It's hard being her mom.” I love her for saying this. Because it is hard, and it's even harder to admit that sometimes it's difficult -- regardless of the love you have for your child.
I was always aware that parenting would be a little more challenging because of Daniel, but until recently I didn’t even think of how it would affect the lives of my other children. One day while taking a shower, my mind was a runaway train (as usual). My thoughts went from did I remember to shave both of my armpits to what happens if I accidentally cut myself in the shower and bleed out before anyone came to check on me, who would take care of Daniel?
At that moment it hit me. One day I probably won’t be able to take care of him anymore. Is it fair to expect one of his brothers to take on that burden? Will they do it begrudgingly, or will they be happy to be able to spend that extra time with him?
These are long, long term worries. There are, of course, shorter term things we deal with. Like the days when Frankie (poor middle child) acts out in anger because he's the one getting the least of mom or dad's attention. And although I would love to blame it on those darn toddler years, I know I can’t. I don’t blame him for being angry.
Recently I stumbled across this letter. A letter written by a mom to her non-special needs child. It resonated with me so strongly that I felt I needed to share with any other special needs parents out there. Here are a couple of things she said that I can really relate to.
I’m sorry. For all the times you’ve felt neglected, unseen, unloved, or unwanted, I’m sorry. Please forgive me. I am making an effort to find ways to spend more alone time with you—both in little moments we can steal at home and in times we can go out together for a soft drink, meal, or to browse our favorite stores. Balancing everything gets difficult in certain seasons, and I am trying to get better at it.I love who you’re becoming. Despite the frustration, anger, sadness, and other negative feelings you experience from time to time, I love who you’re becoming. I see your compassion, kindness, and sensitivity to others’ feelings. You are wise beyond your years. God is going to use the experiences that cause you the most pain now to continue developing character traits in you that will be invaluable to you both now and as an adult.
Here's something I intend to add to the letter I will have to write one day.
Thank you. Thank you for being the best brother ever. Thank you for treating Daniel like everyone else and not expecting any less of him. Thank you for being kind and patient. Thank you for encouraging him in ways Dad and I aren’t able to. Thank you for being YOU – a very important piece of our family.
Opinions expressed by parent contributors are their own.