Being the parents of a child with special needs has been one of the greatest privileges of our lives. Our special needs girl (who has spina bifida) is full of spunk and joy. We know God has created her with a purpose and it's been fun to see her already being used to minister to the people she encounters.
If you are going to offer medical advice, do know what you are talking about or soften your "advice" by asking questions to see if you are on the right track.
I was once sent a long e-mail by a well-meaning friend who was eager to inform still-pregnant-with-Butterfly me that all that I needed to do to "fix" Butterfly was to take her to a good chiropractor after she was born. I don't think this person had any idea at all about what spina bifida is. Another acquaintance, also by e-mail, promised that Butterfly's life would be turned around, if I would only purchase the high-priced magic juice she was selling. Even better I could become a distributor under her. I probably don't need to explain how we felt about this.
Pray with understanding.
Prayer is always good and please pray for us, but please don't make our child feel like she is sick, because, praise God, she isn't. Once when Butterfly was a toddler, we were stopped in a McDonalds by a concerned family asking if they could pray for Butterfly. We agreed and they prayed sincerely that God would "heal her" and we were grateful, yet it felt odd because we know Butterfly isn't sick. Now that she is older, people have offered to pray for her healing or pray for her to "get better" and privately she says to us, mildly irritated, "What were they talking about? I'm not sick." I just want to be careful with my girl's heart and her trust in God. What if He chooses not to heal her in this life; chooses to be glorified in her life as she lives abundantly for him WITH spina bifida? Privately, I have prayed thousands of times for her to be restored, to be "healed." I know that hundreds of God's children have prayed the same. At the same time, our faith will not be shaken by God's answer. A good rule of thumb here is to just ask the person or parents, "Is there any way I can pray for you and your family?"
No pity needed or wanted.
We have been overwhelmed by the kindness of people: babysitting, hand-me-down clothes, meals after hospital stays and on and on. So many people have sensed our need or just wished to minister to us and we have been truly blessed. I've even had a few friends cry with me over our sorrows. All of that is compassion. But please don't pity us. Please don't look at my child with sad eyes, shake your head and say for all to hear, including her, "Poor baby." You must not know her. She loves life, makes friends wherever she goes and has even recently said "It's more fun not being able to walk." Perhaps she's right. How can we, who haven't lived her life, argue? Once a man stopped the kids and me in the library and regaled me with how sorry he was for Butterfly and insisted that I take $3 to buy my kids ice cream cones. He intentions were very sweet, but I was glad Butterfly was too young to realize that she'd just been given a hand-out, out of pity.
Don't limit them.
We love to hear about adults with spina bifida who have achieved great things. But please don't tell us stories about how you know someone with spina bifida who was able to live in a group home or get a job as a Walmart greeter, as if we are to take comfort in that. Granted, there is nothing wrong with living in a group home or working at Walmart in any capacity, but to suggest that our daughter doesn't have the full gamut of choices for where she lives and the kind of work she will do really does hurt.
Ask questions.
We love most questions. Questions like, "Do you mind my asking why you (your daughter) uses a wheelchair?" are awesome. However, "What's wrong with you (her)?" not so much. We get that one a lot. And for the record, nothing is wrong with her. She is the way God created her. We've heard of a few plucky kids with SB who have answered that one themselves with, "Nothing's wrong with me, what's wrong with you?" I kind of love that, but I'm still glad Butterfly hasn't responded to anyone that way... yet.
Speak, don't stare.
We love meeting new people, so if you or your kids have questions, just talk to us. Butterfly can't stand to be stared at, but lots of people, kids especially, stare at her... for a LONG time. We are encouraging Butterfly to flash big friendly smiles at kids who stare at her and, when it is appropriate, to go up to them and break the ice. She's had some awesome experiences doing just that; even so, sometimes she just wishes the staring would stop. If you notice your child staring, perhaps you could bring him or her over to meet Butterfly. We realize they're just curious and they'll probably really like Butterfly, and maybe us too. Most kids do.
After reflecting on this particular tip, I want to add that a far worse fate for Butterfly would be to have people vigorously working to AVOID looking at her. I think that sometimes happens as special needs kids become special needs adults. It is ALWAYS lovely to meet someone's eyes (any one's eyes, regardless of their abilities) and smile, perhaps say hello, even if they can't or won't respond in kind, and then go on about your business.
Don't sweat it.
Most importantly, just be yourselves. Few of the stories I've shared have caused us any more than a moment of discomfort. Ultimately, if worrying about doing or saying the right (or wrong) thing will keep you from getting to know us and deprive us of getting to know you, don't sweat it. Just jump in there and say and do what comes naturally. We think we'll like you too! We usually do!
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
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