down syndrome, melanie hollis, parenting a non verbal child, raising a non verbal child, raising special needs kids, special needs blog, special needs mom, special needs mom blog, Special Needs Parenting
The dreaded guilt trip. If you’re a special needs parent who is also juggling typical children, you know this trip all too well. Where’s that ticket back to normal, right? Managing necessary therapies and medical appointments on top of meeting every single one of your differently-abled child’s needs, you have very little time to meet the desires of any person who can take care of himself. Are you hungry? Can you make a sandwich? Then don’t ask me to stop what I’m doing to make food for your lazy bones. haha. Can you relate?
Life before becoming a special needs parent might have been about leisure, even though at the time we didn’t quite realize how easy we had it…but now our lives are about pure necessity and survival. As a result, parents often feel they need to apologize to their typical children for the unique challenges a special needs sibling brings to the family, but I never will. Here’s why:
First, I’m a believer in The Lord and His word. In Exodus 4:11, we become privy to a conversation between Moses and God. In this heart to heart, God explains that He is the One who creates disabilities. Scripture says:
“Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?”
Then again, in Jeremiah and in Psalms, we are reminded that God formed us and knew us even before we were born. In short, if God formed and created my two specials with Down syndrome, and if in His great wisdom, He also chose to not give them the gift of verbal communication, then who am I to judge? or to complain? or to apologize? If in His sight, Hope and Charlie have been perfectly crafted, then they should be accepted and embraced as such.
Second, life is hard. With the implement of sin and our arch-nemesis (satan along with his slimy little minions) life was designed to be a battle and a struggle. Without the hardships, though, there would be no test. And without the test, there would be no need for a choice of salvation and the promise of eternal life. James 1:2 says:
“Count it all joy, my brothers, when you meet trials of various kinds” … emphasis on when.
In a nutshell…if you are a believer, life will not be a big cake party…even though I LOVE cake, especially with icing, don’t you? But God says, “No! You shall not always have cake” (my paraphrase)…and it’s for a very good reason.
See Romans 5:3-5:
“….but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
And James 1:2-4:
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”
The trials and hardships, according to God’s word, are incredibly good for us. They sharpen us, mold us, and teach us to become more pliable so we can ‘be complete and lack in nothing’. Do you want tenderness? brokenness? gentleness? patience? Then spend some time with someone who is unable to communicate with words or with someone who is unable to walk or to hear. Look into their eyes and see past the disability into their heart. It will change you. It’s an indescribable gift when you see someone for who they are. Why would I ever apologize for giving my typical kiddos that daily gift?
Third, having been brought up with a precious grandmother who was handicapped, I have personal experience. Stricken with what doctors called the most severe case of rheumatoid arthritis they’d ever encountered, she couldn’t walk, turn her neck, use her arms/hands…and couldn’t feed, dress, or bathe herself. She never held me or hugged me, because she wasn’t able. I, however, never knowing her any other way, knew her simply and utterly as my Grandmomma.
When she needed water, even as a young girl who had to step up on a stool to reach the faucet, I’d jump up to fix her a glass with a straw. I remember holding it for her and allowing her to drink until I heard the familiar slurp of the last drop. When someone would call on the phone, I’d stand and hold the phone to her ear for as long as she wanted to talk. “A little closer,” she’d say with a sweet grin. And I’d proudly oblige. If she wanted the TV channel changed, I changed it. If she had an itch on her nose, I grabbed a tissue to scratch away. I did all of this as a little girl and never thought of it as unusual at all. When I became a teenager, she’d have me read the Bible out loud to her. At the time, I thought it was because she wanted to hear it…now, I realize she wanted me to hear it. I loved that woman so much. She was funny, smart, and the strongest person I’ll ever know. If I sit quietly for a moment, I can still go back to the pew I sat in at church, beside her wheelchair, and I can hear her singing “On Christ the solid rock I stand, all other ground is sinking sand…all other ground is sinking sand.” It will always be my favorite hymn.
Because of my grandmother, Elaine Morrow, I’m who I am today. I wouldn’t change that experience with her for the world. When I see someone who is handicapped in any way, instead of turning away, my heart leaps and I leap along with it…rushing to say hello, to shake a hand, or to give a smile. Because of her, I love the special needs community with a love I cannot begin to describe. She left an incredible legacy that is now being passed down through the lives of Hope and Charlie. I see it so clearly. During my childhood, I was given the invaluable gift of compassion and of service through my grandmother…and I rejoice in that gift. As that legacy was passed to me, it is now being passed along to my typical children as I watch them care for their special needs siblings. I’m thankful and not ever sorry.
So, to all of the special needs families who’ve heard the familiar whispers:
- What about her other children? Do they get enough attention?
- I’d never want to be in a family with someone who has special needs.
- Do they even have a social life? I bet their kids cannot wait to grow up and get out of that situation.
When you hear those empty words, just stand firm on what you know:
- Your child was created perfectly by a God who doesn’t make mistakes
- Life for the believer is always going to be full of trials and hardship
- By serving those with special needs, you are serving The Lord
- By allowing your typical children to serve their special needs siblings, you are teaching them to serve The Lord
- Your typical children are learning a vital life lesson that will chip away at selfishness, corruption, haughtiness, and greed….revealing virtues that are most important.
“Whatever you do for the least of these, you do for Me.” Matthew 25:40