The Alternative

Several weeks ago my friend Megan in my online anophthalmia group responded to another parent whom was concerned about things that people will say to or about their child in public. The mom wanted to know how the rest of us ‘handled’ questions or comments. Things like ‘what’s wrong with her’, ‘Why is she sick’, some type of sympathy comment, or the worst ‘I am so sorry’. Megan has learned how to handle those questions with grace. Without making the person asking the questions feel uncomfortable, Megan can answer the questions. She has tact.

More often than not, I find myself explaining things, trying to make the other person feel comfortable. Never mind the fact they just made our family and my children feel like a sideshow.

Here’s the thing - What do you say?

I have juggled this particular issue for a while. I know it is hard. I remember being on the flip side. Depending on the day, our place in time and most often the amount of sleep, my response to ‘those’ questions vary. Sometimes it is easy to turn the other cheek, blow it off, be polite; other times, well….lets just say my facial expression probably speak volumes. No matter the advice I have received about comments, my reaction is always the same. It is easy to bare a solution especially if you have never had the experience - never will have the experience - or only experience the moment on very vast occasions. I call this (sorry if it sounds offensive) the cheap seats. The result of inconsiderate comments results in two things. One, our hearts break. Two, my sons are usually watching, LISTENING and potentially given an opportunity to see Ivey different than what she is - their happy normal baby sister.

Then last week my friend Martha sent me an AWESOME clipping about things said to parents of special needs children. It tackled all of the above and then some. A parent of special needs children wrote the article. It helps to explain a little of what is going on in the lives of the family, our family. Basically, it gives tips on how to strike up a conversation.

Trust me - I have seen the look on ALL of my friends’ faces at some point - the look of ’what can I possibly say to you?’ My friends all got over that months ago. Not long ago I had a friend, I will leave her name out, said she worried when she held Ivey. Of course I asked ‘why? ‘, she is fine. She said “I am always worried about my breath. I don’t want Ivey to recognize me as the lady with smelly breath”. See. They are over it. But there is a world out there that still doesn’t know. The article Martha sent was written to help others get past the awkward and uneasy feeling that most people get when trying to talk to someone with a special needs child. I would love to email it to any one who might be interested.

Despite my own personal feelings and Matt’s personal feelings, Ivey has one awesome life. As her parents, Matt and I worry for her a lot; we bare the brunt of issues. We are handed the other ‘stuff’ that makes her life different. Ivey has no idea that we juggle her financial responsibilities, medical responsibilities, medications, home health, therapies, doctor appointments, a rigorous daily schedule, and countless other tedious responsibilities. She doesn't know things about her are different. But if you take a close look, there is something quirky about all of us.

Ivey wakes up in the morning to a nurse who is so sweet to her. Her brothers and parents come in to her room to kiss her good morning. The rest of her day revolves around feedings, naps, baths and playing. She does have medications, trach care and a few extra things to tend to during the day-but it is her life. Take those out and the rest sounds kind of normal, huh?

If everyone who met Ivey would put their own personal experiences aside, look past her gadgets and sit down with Ivey, talk to her, play with her, interact with Ivey exactly like any other one year old; they would find one very happy baby. More than once I have been asked if she is always so content. Happy. Yes. She pretty much goes with the flow. No, it has not always been that way, but it is NOW. She has a smile that is contagious. Ivey has stamina. Believe in me, she has a whole lot of willpower and a little bit of sass.

Unfortunately, Ivey has something else. Let’s just say it is her sixth sense. If she feels that you are uncomfortable or uneasy, she will not respond so openly. SHE KNOWS.

It probably sounds like I got a little side tracked, not really, just on my soapbox.

Ivey has nothing wrong with her.

She does breathe through a trach which is different from most people, but not all.

She has a feeding tube, so do others.

She is blind; however, she is not the only little blind girl with anophthalmia out there. There are more.

Ivey is not sick. She is as healthy as a horse. Her gadgets do not qualify her as ‘sick’.

Ivey is ALIVE. She is full to the brim of LIFE. Ivey beat the odds. There is no room or time for sympathy or pity around here. If you want to send me or Matt into the deep end just say two words ‘Poor Thing’. That little girl has out done all of us when it comes to overcoming the impossible….PRAISE her!

Last but definitely not least, there is nothing in our lives that we are sorry about. N.o.t.h.i.n.g.

I say all of this because I think 99.9% of all other families who have a child who is considered a special needs child, no matter the multitude, feel the same way.

There is always an ALTERNATIVE question or comment to the one that initially pops into your head. Think before you speak. When all else fails - pay a compliment. It works like a charm. The ice is broken.

Last Tuesday we took all three (Knox, Walker, and Ivey) to the Georgia Aquarium. A lady glanced at Ivey a few times then she asked ‘How old is she?’ That lead to me saying, “She is one and our little peanut”. It went from there, neither of us was uncomfortable. Sure for a moment there was a since of awkwardness, but she was thinking outside of the box. She was considerate.

I love questions that leave room for me to be informative about Ivey. The more knowledge out about her diagnosis, the more people understand, the less there is to be anxious about, the more love in Ivey’s life. Many times if Knox is in the vicinity he will answer questions without me saying a word. (Be ready for the four year old version.)

I guess I run into this so often and honestly have been trying to figure out how I should handle the situations. Not only how I will handle them when they occur, but how I process them in my own head and heart. They hurt. I set the tempo no matter how a question is asked, which question is asked or in what tone it is asked. Isn’t there a quote that states life is 10% what happens to you and 90% your attitude, your reaction? I pray (really really hard) to have kindness for those who do not have compassion. Struggling with that one right now. I have little compassion and limited patience for people who are not getting it. It is hard to believe that people can’t see another person with feelings and emotions sitting right before them, whether it be the parent, child or the siblings. Throughout this process with Ivey we have tried to keep in mind that people react in different ways and in their own time, sometimes because of a lack of knowledge about Ivey’s diagnosis, etc, but when it comes to spoken words and sometimes the unspoken, regardless of knowledge, there can always be thought. When all else fails - just smile.