Monday, July 14, 2008

Dear Sarah,

This post has taken me a few days to type. Honestly, my extreme emotions have taken me by surprise. As you well know, I am never at a loss for words. But, since we first hugged on Tuesday my head started to swirl.

It took me a few days but I have finally figured out why. Whenever I am face to face with people, I tend to be guarded because Paige speaks before she thinks. Imagine how stressed I should have been. Paige in a hotel filled with blind people. I was waiting for her to start asking everyone what medical condition caused their blindness. She has been known to walk up to complete strangers and start asking questions.

But, from the first moments of our time together I felt safe with you. I knew you would not judge us if Paige let her curiosity show. Safety. What an incredible gift you gave to me Sarah. What an incredible gift you gave to Paige. She asked questions, you answered. You never made her feel bad for wondering.

Within minutes we were all laughing. Paige was completely drawn to you and your incredible spirit. So were Jason and I. So were many others. Your helpful nature came shining through.

During the ride home Tuesday night, I was already looking forward to our Friday visit. Paige didn't stop talking about how much fun she had and how much she loved spending time with you. But, it was then that I realized how much this world needed to change. That's when my emotions got out of control, very quickly. Our trip to Target was a huge step into your reality. Before that day I never even thought twice about many of the restrictions that you face on a daily basis. You are so amazing. You make it all seem so easy.

Friday came and I was so excited to be spending the day with you and Kevin. With my crazy emotions in tow, Paige and I practically ran down the hotel hallway to your room. Before we even got there we could hear your laugh. Paige smiled really big.

She had a blast that day. From playing with Loretta, getting to go with you to try out the possible currency options, seeing how your computer works, listening to your music, and even being turned into a blind child. She loved it all.

She learned some pretty hard lessons that day too. Seeing the reactions on the faces of sighted people was very difficult for her. But, being that she was in the safe environment that you created, she was able to learn from what she saw.

Sarah, I am forever grateful for the time we spent together. You are an amazing woman. I know you won't agree with me when I say that you are one of the most courageous people that I know. You would tell me that you are merely doing what has to be done. But, there are plenty of people out there who would never venture into unknown territory like you have done. You are an inspiration to many.


I could not end my letter here. There are a few more people that I need to mention.

Michelle,

I really enjoyed getting to know you. You had no idea about this but you said something to me that brought tears to my eyes. The first day we met you said that you liked my blog because I "tell it like it is" and you were glad that I was out there talking about the issues. You have no idea how much that meant to me to receive such validation from a former preemie. I can't thank you enough.

I had so much fun spending time with you on Friday. All that laughing we did while walking the dogs was wonderful! You made us feel so welcome. I look forward to reading your journal and getting to know you better.

Kevin,

Oh where do I begin? You are one very special person. You are one of the most open minded people that I know. You treated me with respect after finding out (thanks to Paige's openness) that our religious beliefs are quite different. That's a rare quality nowadays. I really enjoyed our lunch chat! Oh, and your sense of direction... could I borrow it? If it wasn't for you, we would have gotten lost on our return trip from Target and our walk back after lunch. I sure will miss your sense of humor too!!

With much love to all of you,

Stacy

8 comments:

Sarah Blake said...

Hi, Stacy.

Thinking about Paige's reaction to the lady outside... Dealing with situations like that does take a lot of courage, and I should tell you that I can be as obsessive about it as Paige was. There are some kinds of situations that literally send me home bawling and make me mope around for the rest of the day. But they're still things that have to be done. The alternative is staying home all the time; and I can't handle that at all. I've gotten in the habit of looking for little small things to enjoy: neat opportunities to listen to nature sounds when I should only hear traffic, running into someone in a place I didn't expect to meet them, my cat purring, muffins... (Muffins have become a staple in my diet just because on some days they are something good that I can think about when the day starts badly. I'm now having to find good things like bean soup and apples since I'm trying to lose weight.) If I could choose how I wanted to inspire people, it would be to look for good things when everything is crummy. This doesn't mean shoving the crummy under the rug. But it does enable the crummy to be handled without falling apart.

You and Paige gave us gifts, too. Sometimes it is a bit unnerving to meet new people who are sighted. It is easy to feel like everything we do makes us vulnerable. Will we do the wrong thing socially? Get too much food on ourselves? Make a horrible facial expression without realizing it? (I have been told that I look mad when I'm thinking deeply or extremely upset.) People often withhold things from us or sugar-coat truth in order to avoid "hurting our feelings." So meeting someone who can be honest without being rude is a true gift.

[hugs] to you and Paige.

mom to lilike, locke, anjeni said...

I have an Auntie who can not see at all and lost a sick baby girl years ago back in the 8o's before she lost her sight compeletely. She is a wonderful caring thoughful person who I enjoy talking to. She has an amazing spirit. Adn is so sweet to Lilike, Locke and I can't to let her have a cuddle with baby Anjeni. Just hoping all goes smooth for the birth of Anjeni who is due around July 28th 2008. That I can bringhome with me a happy healthy little girl to watch grow. Lilike was born sick but grew to be a healthy happy girl who is a bit shy. Her brother isappy go lucky and seems to mostly smile and laugh all day.

mom of lilike, locke & anjeni said...

I have an Auntie who can not see at all and lost a sick baby girl years ago back in the 80's before she lost her sight compeletely. Because her eyes just got worse oevr time. Born with a rare medical condition. She is a wonderful caring thoughful person who I enjoy talking to. She has an amazing spirit. And is so sweet to Lilike, Locke and I can't wait to let her have a lovely cuddle with baby Anjeni. Just hoping all goes smooth for the birth of Anjeni who is due around July 28th 2008. That I can bring home with me a happy healthy little girl to watch grow. Lilike was born sick with a possible infection and spent 9 days in the NNU at FMC on 5 days of iv antibiotics and a further 2 days on thigh injection antibiotics. A total of 7 days on antibiotics. Lily grew to be a healthy happy chubby baby and healthy happy little girl who is 5 now. Her brother Locke born May 2006 is happy go lucky and seems to mostly smile and laugh all day.

Alexis said...

I loved this blog post. I lived with Sarah for 19 months before coming to WMU. She is the kindest, gentlest, safest person in the world. You are very lucky to have her in your life.

I hope you and Paige enjoy viewing my dog blog. Feel free to leave comments. Paige is free to ask whatever questions she wants as she reads the blog. I love educating sighted children about my life as a person who is blind and works a dog guide.

Kyrsten said...

Thank you for "introducing" us to Sarah!

Just yesterday, I received a call from the mom of one of Joshua's NICU "roomies" (a 25-weeker, now 22 months). We've kept in touch; her son was recently declared legally blind due to ROP, despite several surgeries.

She's still very angry with the doctors at our hospital for saying her son was blind, 20 months ago ("he can see! he's not totally blind!!"). Her husband is very "sport-y," so he doesn't hide his disappointment that he can't play ball with his son.

I'm not always sure of the right thing to say.

Coincidentally, I was just re-reading a favorite book for a class: Race the Wind, by Harold Krents [a celebrated lawyer who happened to be blind). He mentions that his blindness was caused by "a complication of premature birth" (he was born in 1942), and talked lovingly of the eye doctor who wanted to find the causes... He doesn't specifically mention the condition, but I wonder if he had ROP!

I guess I don't believe in coincidences... so now I'm wondering why all this is coming together right now...

Sarah Blake said...

Kirsten says, "She's still very angry with the doctors at our hospital for saying her son was blind, 20 months ago ('he can see! he's not totally blind!!')."

I just started a blog on my ROP site. Perhaps she would like to read it: http://rop.growingstrong.org/blog/index.html. This is a very common response: to be angry about the use of the word "blind" when a child has some remaining vision. In reality, "legal blindness" refers to a cut-off point. A person who is legally blind can still have a lot of usable vision, but there is enough problem that the person cannot use their vision normally and thus needs special services and tools. So "legally blind" is used to establish eligibility for these services. Most people who are "blind" are not totally blind but have at least some ability to see light.

I love the book, To Race the Wind. It was made into a TV movie in the 80s, and that was my first introduction to it. Incidentally, the first case of ROP was discovered by a Dr. Terry in 1942. It was mistaken for congenital cataracts.

23wktwinsmommy said...

I am so happy that you were able to meet Sarah and it had such a profound impact on you and Paige.

Since happening upon Sarah's writings months ago I have read much of her live journal entries. Because she separates her writings by topic, I was able to focus on some of the ones that interest me most, and often go back to her words. She has articulated so well things I have been struggling to say/explain for almost 2 years now.

I highly recommend reading Sarah's journal. And Sarah, thank you for the honestly, compassion, and insight I've found in reading your words.

liz.mccarthy said...

Stacey, just wanted to make sure you got my emails. I responded to you via email and never heard back, and sometimes my email goes to folks spam...just wanted to make sure you know I emailed you back! liz M