Thursday, October 11, 2007

I can't shake a distraught feeling that I have had since an encounter with a young man at the grocery store this morning. He came up to me and said, "What's wrong with him?", refering to Gavin. I didn't know how to respond. I was upset that he had the nerve to ask such a question! So I said, "That's kind of rude to ask, don't you think?!" He claims that he asked me because he has a nephew with heart problems. I then told him that Gavin does have heart problems and that's all I said. I felt very sad after this. I'm used to people looking at him and giving me looks of pity when they see he has a tube hooked up to him (feeding and oxygen at times), but they usually don't have the nerve to ask something like this. I guess I'll have to become more tough skinned, but I don't want to have to! I really appreciate it when people look at Gavin and smile and say , "Cute Baby!", or something like that. I really DON'T like it when people say that he doesn't look as "Down syndrome" as some do! He looks like Gavin! The way God intended for him to look! Also, he HAS Down syndrome, he ISN'T Down syndrome! He's a person with needs and feelings just like all of us! Why do some people think that they have the right to know what's "wrong with him" and talk about him to me this way?! Joel said that I should have said something like: "All of us have something wrong with us since sin entered the world." "Share what's wrong with you and I'll be happy to share what's 'wrong' with him" or "It's obvious what's wrong with you, at least you have to ask to find out what's 'wrong' with him." I just feel so sad that Gavin will always have to face these encounters! I really feel mama bear coming out at times like this! I guess I'll have to pray about it. The moral of this story is: People have feelings and if you can't say something nice, don't say anything at all! That's what my mom always told me! Thanks for teaching me manners mom! Thanks, all of you, for listening to me vent!

We received some more bad news from the neurologist. The CAT scan that Gavin had shows that he had a stroke back in April when he was so dehydrated. The stroke didn't show up on the first CAT scan that Gavin had because it takes about a month for it to show up on a scan. If Gavin could have had an MRI, it would have shown up right away. Like I've said before, Gavin can't have an MRI because he has a pacemaker. The neurologist says he hasn't seen the report with his own eyes, so we don't know what part of the brain was affected. This may be why Gavin continues to have seizures. I feel like it's never going to end! I'm tired of being patient! I want answers! I want no more seizures! Please pray for this!

Enough bad news! Now for some good news! Gavin isn't gagging as much as he used to since changing from the higher calorie formula to the regular kind! I'm really happy about this! He also seems to be focusing a little better on things and us with his eyes! I'm thankful for the little things!

Thanks for your continued prayers!

Love, Alicia and Family

5 comments:

Annette Selden said...

The rudeness of some people never ceases to amaze me, Alicia. I'm glad you pointed it out to that person. Maybe he'll be more careful the next time he's inclined to say something insensitive to someone else. I'm sorry you had to deal with that. Some people just don't recognize true beauty like Gavin's.

We'll pray that the doctors--and you--get some answers so that some of Gavin's health issues can finally be addressed. We never stop praying for him and all of you.

It is good news that the gagging problem is getting better. We'll pray for even more good news.

Love,
Annette

Anonymous said...

Well, you are very stressed with all you've gone through the past year, but sometimes people will ask because they really are interested not because they are insensitive. This young man thought Gavin reminded him of his nephew. That's not a bad thing, I'm sure he loves his nephew as much as you love Gavin. Perhaps instead of an angry response a basic and honest answer would be appropriate. Respond that there's nothing wrong with Gavin, he has Down syndrome and is perfect just as he is. Then just walk away with a smile because Gavin is perfect just as everyone is in Gods eyes.
God bless you and your lovely family.

Anonymous said...

I get those same comments all the time just recently from a childrens pastor who asked what was wrong with my child and if he would amount to anything. That was the first time I purposely said nothing and removed myself and child from the situation. People need to learn boundries when asking personal questions that are not any of their business. Yes most of the time a child will ask about my son's eyes and I will try to educate people, but you can tell when someone wants to learn/really know and when someone is just being nosy/rude.

The next time some one asks me what is wrong with his eyes I am going to say "Whats wrong with his eyes (with concern) then look ay my son and say OH my gosh they weren't like that before!" and freakout - then laugh at the person's reaction. Wouldn't that be a hoot! I know that's mean, but its not OUR job to educate everyone and teach politeness. We are here to LOVE our kids and protect them! Sometimes my emotional side takes over and MY MOMMA BEAR comes out!

YOU GO MOMMA BEAR!

Amy said...

Of COURSE there isn't anything "wrong" with Gavin. Sadly, some people just never learn how to be couth and respectful of others and it's the good people - like you - who end up paying for that. I think you handled it well, though, by not stooping to his level and being rude in return. When someone asks me something I don't want to divulge or don't think is their business, a cool and simple "And why do you ask?" in return usually sets them back on track and makes them realize they've crossed a line. :o) So sorry you had to deal with this and felt sad about it.

I'm also sorry to hear about the stroke...I can't believe that!!! At least now they know; hopefully this new finding can help them to lessen the seizures. GREAT news about the gagging and more eye contact, though! See? The good with the bad...it always balances out in some way, doesn't it? :o)

(((HUGS)))

Aunt Amy

Julie said...

Alicia,
I can relate to your story, but on a much lesser level since Rena brings it on herself by dressing like a boy. However, the mama bear comes out in me everytime a child comes up to us and asks if Rena is a boy or a girl. I usually ask if they are a boy or a girl (which of course is obvious). Then when they answer I ask them why it mattered in the first place. I've even had kids argue with me, her mother, that she is a boy. In fact last weekend we were at the Wharton Center and coming out of a long line in the women's restroom, a kid yelled "why is there a boy in the girls room". Again, I don't mean to belittle your situation and Rena chooses to dress/look like a boy. Its who she feels comfortable being. Anyway, so sorry you have to deal with that on top of everything else. Gavin is so loved that he'll never feel "there's something wrong with him".
Poor little guy had a stroke too...so sorry for your frustration and lack of answers.
Love you,
Julie