Carpenters

On the next to the last day at the beach, Ivey finally made it down to the ocean. She loved it and I have some great pictures to post if I can ever get my laptop working. But that isn't what this post is about, not this time. Of course it centers around Ivey, but this is more about the bridges that we build to secure people in Ivey's life.

While I was pushing Ivey in her stroller from the beach to the pool, another family followed behind us. The little girl with the family, who looked to be around three, walked beside Ivey while her mom was behind me. Since Ivey had been sick and not at the pool all week, the family had not met Ivey; they had met both of the boys. The little girl never looked up to see where she was going. She stared intently into the stroller at Ivey.

It is a stare that Ivey gets almost everyday of her life from toddlers. It is not a rude stare, more a curious stare. A stare that really says, "I know she is like me, but something is different that I don't understand." And being that this look only comes from toddlers, they mean no harm, but do not have the vocabulary to ask - anything.

I am completely okay with that look. The sting of the look never goes away. Not because of my own selfishness, but because there is literally an unspoken barrier that limits other kids from approaching Ivey like they would anyone else. It stings because her life experiences have that extra step that must be overcome for her to make friends.

And so that day I thought about my skills as a bridge builder. Like many parents, 99% of most days I openly give information, or at least try to, not her whole story, just enough to form a stable bridge to Ivey.

That particular day, the mom had yet to 'see' Ivey from the front, remember she was walking behind me. All she could see was Ivey's legs kicking in the stroller. She could hear Ivey babbling away. She could see her little girl staring complexly into the stroller. So she said to her daughter, "She is looking at you, Reagan. Tell her hello. She is talking to you."

And that left me to do what I know is best for Ivey in those situations, not what is 'comfortable' to any one else - not even me. This is just one of the many areas that Ivey pushes all of us beyond our comfort zone. It is what is BEST for her.

I turned over my shoulder and said to the other mom, "Ivey is blind, she does not know Reagan is there. And, with the wind blowing like it is, she can not hear her either. Reagan can see something is different about Ivey and she is trying to figure that out." That was information enough for the mom to look perplexed and embarrassed. So I did what I most often do. Stopped dead in our tracks, bent down on Reagan's level - Ivey's level - and took Reagan's hand and said, "Reagan, this is Ivey. Ivey, this is Reagan." Then I placed Reagan's hand on Ivey's shoulder. We waited there for a moment.

Then we moved on to the pool. As uncomfortable as it sometimes is, properly introducing Ivey is my role in Ivey's life. As we walked on the mom told me Ivey is beautiful. And she is.

Yesterday the boys, Ivey and I went to the Gap to pick out a new outfit for Ivey's first day of school next week. And as always, my boys made me glow with pride. There in the middle of the girl's section a little girl walked over to Ivey's stroller and stared that same stare with curiosity. This time I had had my back to them. It was Knox's voice that I heard first. He asked the little girl how old she was. "Three." Then he introduced himself and his brother filled in with age brackets. Finally he said, "This is my little sister Ivey. She is three too." By that time I had turned around to listen and watch. I looked at the other mom, who looked down at Ivey, who then had the look of 'what should I do'. Her little girl was only inches from Ivey's face staring.

The mom told her daughter to move away. Not being rude, but most of the time parents just don't know what is the right thing to do - how I, the other parent, will respond. She is a mom too, she would not want someone staring at her daughter that way. But, it is okay...
(We, parent's with kids with special needs, especially with facial deformities have pretty thick skin most of the time. You, as our friends should grow that thick skin too.)

I whispered, "It is okay." and waved my hand to back her away from the kids. By then Knox was in mid-sentence. "My sister is blind. She can't see you, but you can talk to her." The mom hesitantly smiled, literally sighed and relaxed her shoulder and said "Tell Ivey your name." Bridge was built. Ivey met a new person and her family. My sons are excellent carpenters. What great responsibility for such little people, but they love their sister.

My point. The standard personal space that we all desire does not exist with Ivey. She needs to know who you are. Touch her on the back of her shoulder and introduce yourself to her....every single time you are with her. Just like you do not mind being patted on the shoulder, neither does Ivey. Always say your name. And if you are with Ivey go ahead and take the reigns and introduce Ivey to the people around her. It might make you fill uncomfortable in the beginning, but it is only us feeling subconscious about ourselves, we are being driven to do something that the rest of the world normally does in a different way... But that is absolutely no reason not to do this. If we do not take these simple steps, Ivey will live alone in her world. It is our responsibility to her. She needs us to do this with her. -- Not for her, but with her, because she IS an active participant in the conversation. -- Depending on the person and the situation, some may want you to teach them a sign or ask more questions. You all love Ivey so do not hesitate, say what you do know. It will only allow that bridge to form to let others into her life - to help her make friends.

Be a carpenter.