"God gives special children to special people"
"God doesn't give us more than we can handle"
"It could be worse"
These are some of the comments people make to me....ALL the time.
These comments make me want to....
I did not ask to be special. I am very, very aware that "it could be worse." I am SO tired of these statements. I know people say them because...they don't know what else to say and they feel the need to fill the quiet void with random canned phrases.
The people who make these statements do not have a child with special needs. These people live in Italy. They do not live in Holland; where I live.
I live in this world. I deal with this...every minute of every day. I do not need people to tell me how to be, act, think, or feel...especially if they do NOT have a child with special needs.
I, actually, had someone comment, "But its just her eyes." Are you kidding me? They have NO idea that my child is delayed because she cannot see the toy to roll over. Why do "normal" babies crawl? Because they want something. Lilah isn't crawling, scooting,etc. because she does not know what is there.
The comment "its just her eyes" is more hurtful than anyone could possibly know. These people are not with me when I lay Lilah down next to other babies and see how different she really is. The way she holds her head in fluorescent lighted rooms(because the light is SO bright it blinds her completely), the way she closes her eyes when she's in the shopping cart at Wal-Mart...and 6 people stop me to ask if she's sleeping. I want to say, "Yes folks, Mother of the year award goes to me for letting my child sit up, holding the cart, and she sleeps all at once. I know I sure do have a talented child." But instead I politely say, "No, she's not sleeping, she has a vision impairment." AND you'd think that would be good enough, but noooooo...THEN people's curiosity gets going, "But her head is down, she must be sleeping."(yes, I knew that they knew her better than I) I say, "No, her null point is very low in the periphery of her eye." and they say, "HUH?" and I say, "she can only see a very small amount out of the corner of her eye." and then the kicker comes in..."But that's good enough, right?" I would love to go into a store and not have to stop and answer so many questions. I am just not there yet. I am a VERY busy Mother of four. No, I do not sit home all day and eat ice cream and watch soaps. I am usually running in the store, with all four in tow, trying to get it all done in a matter of minutes. The last thing I need to do is tell people that Lilah has this delay and that delay.
"God grant me the strength to answer the questions of these people, because YOU know how hard this is on me."
This is what I pray as I am listening to their questions. I know, yes, I really do...that Lilah's testimony is one that is being shared around the country. (Thank you for those that continue to pray for her daily) I am so grateful for that. I know that so many people need to hear this story...AND I want them to. Sometimes, the telling...the actual verbalization... just gets to be too much.
The canned comments and responses are not comforting in anyway. Sorry, they just aren't!
What a Mommy needs, a Mommy like me...with a child who lives in Holland really needs, is someone to listen. Not a fixer, a talker, a manipulator,etc. We need support. The kind of support that comes from a great listening ear.
James 1:19 My dear brothers, take note of this: Everyone should be quick to listen, slow to speak
The people who have helped me the most are those who have been the ones to not say a word. They know that they are not in my shoes. They don't try to be. They just listen, be there, and allow me to feel what I am feeling. I must process this. Each day is a journey. Each day there is something new.
I am So glad that the counselor from our church told me that I am allowed to feel this way. THANK GOD he told me it was OK to mourn and grieve, ask questions, cry, vent, etc.
So, I guess my point in all of this was to teach those who don't know... that it is better to just be there for a parent of a special needs child. Words are not that comforting.
5 comments:
I wish I could kiss her sweet cheeks.
QMM
I think most people's intentions are good. They don't mean to be hurtful. I think it's exactly like you said, they don't know what it's like to be in your shoes, so most likely they don't know what to say that is comforting. When really, sometimes all we need is a friend that will sit with us in our moment(s) of sorrow.
I think, the good in people, want to be helpful and since there is nothing they can do to change the situation, they think it will be comforting if they can bring our thoughts and mood up, which sometimes can come across as callused.
And I totally understand about the weariness from the many questions of passing strangers. At the grocery store I still keep Cayman in her carseat in the shopping cart. People smile at her, and "awww" and then ask "how old she is". For me, that is the dreaded question because once I tell them her age they either look at me funny or question why I still keep her in the carseat instead of her sitting up in the shopping cart.
We all have our days when we just want to feel normal. But I can say, it does get better. The questions about Cayman don't bother me like they use to. I have become so comfortable with her story that I love sharing it, and questions are an easy open door for me to talk about my daughter, which is my favorite subject. My every day posts on Cayman's blog is a testament of that.
I would say, you are just fine feeling as you do. We've been there, we've gone through it too. But just make sure you don't get stuck there otherwise you will miss out on all "the very special, the very lovely parts of Holland".
Part of moving through grief for Mike and I and adjusting to our forever stay in "Holland" has been freely expressing our feelings, but also setting a goal, of where our thoughts and attitude need to be in the future. We need to be secure and confident, so when Cayman is older and understands more she will be secure and confident in herself too.
I am always praying for you Katie!
We get the 'oh its just her eyes' comment all the time...get this someone once said to me after I told them Maddy was visually impaired, "Well thats why God gives us four other senses...she will be fine!" and walked off I totally said the f word to her...and it did make me feel better! :) Lets talk!
Katie! I could have written the part about the shopping cart!
I used to put the bumbo in the main part of the shopping cart because Elisabeth couldn't sit up in the normal part. And she would always just hang her head down, because she didn't have anything to look at. And people would always ask if she was asleep. And I would always say, 'no, she's just blind'. And I would definitely get a reaction! But I love for people to ask about her, so its okay. In fact, I wish more people would ask rather than shy away. (I know that I have told you that before). I am planning on making her a little button to wear that says "Hi, I am Elisabeth. Ask me about my story" so that people will know that it's ok to be curious about her.
I know that you get tired of people asking the questions, but take it as an opportunity to let others know that Lilah is just as perfect as any other baby. Let them know about her and the trials she has and the obstacles she has overcome. I just know that by sharing her story, you will inspire many!
Sending sweet thoughts your way.....
:)
Sending a load of cyberhugs, too. No words.
Barbara
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