It is almost like I have been in denial about this disease for so long. I mean, I knew she had it, obviously. But after looking at all the symptoms that she is developing all at once, it really got me very down and pretty depressed today. Especially now that there is this probability of communicating hydrocephalus, which apparently is common with those Gaucher patients with the D409h mutation. That is really scary.
I can see that my baby girl is falling farther and farther behind where she “should be” for her age. Dealing with orthopedics and brain MRIs now… geez.
When I was at TCH yesterday before PT, I met a mom with a 10-month-old boy who was walking (assisted) all over the waiting room. She asked me how old Hannah was, and I told her 9 months. She made the comment “Oh, I bet she is crawling all over the place, huh?” Nope, not even close. But I just said “She’s getting there!”
What am I supposed to say when people make these assumptions? They are becoming more and more frequent now that Hannah is getting older. I’m not going to tell them the truth, they are strangers. Besides, could you imagine their face if I did? “Oh, she isn’t on track because she has a fatal disease that is killing the neurons in her brain, but thank you for commenting!”
Anyone who sees Hannah could not tell that she was “sick.” Right now, if you didn’t already know she had GD23, and you saw us somewhere in public, you would never guess she was ill. She has no obvious tell-tale signs except her eyes. But most people wouldn’t connect her eyes with a serious condition like that, especially since you really wouldn’t notice unless you were looking for it.
I just hate being approached with questions that I can’t answer honestly to…I really don’t know what to say.
We get the confused looks all the time, too– Connor is the size of a two year old, vocalizes like a ten month old, has the motor skills of a five month old…and he’s three. You can see people studying him and trying to work the puzzle out, as there’s nothing about him other than his hearing aids that screams “genetic condition.”
I kind of go by the comment. If they make an assumption about something, like that I’m carrying him because he’s tired and doesn’t want to walk, usually I’ll either just let them think that or I’ll say, “Well, he’s not walking yet” and leave it at that. If people ask more questions, I’ll say “he has some special needs.”
Usually that’s enough. If they ask further questions, I’ll just say: “he has an extremely rare genetic condition.” If they are STILL asking questions and want to know which one, I’ll give them the name and then change the subject.
We always get mixed reactions. The people who express pity are the worst. I usually read them the riot act– the last thing I want is for people to feel sorry for me or Connor.
Um, right. I’m ranting on a blog that isn’t mine. Sorry– I’ll sign off now.
~Jess
Connor’s Mom’s last blog post..Signs of Greatness
Thank you for visiting my blog! Hannah is just adorable! Although Reilly does not have the same condition as Hannah, I understand what you are saying. Reilly has Cystic Fibrosis, and by looking at her you would never know each day is a fight for her life. If we are out, and she coughs her normal “CF” cough, people back up, or make the comment that she sounds really sick. I just smile and go on. They don’t know this is fairly common. She sounds like a smoker at 5 years old. People just assume that all children are healthy, when they appear that way. I will keep little Hannah (and you & your family) in my thoughts and prayers.
Cindy’s last blog post..Do you or someone you know need a little Jump?
I am not where you are. My child, the one I almost lost due to illness, is alive. But I have been where you are. Wondering what information people really want. And what information I want to give. Another mom, with a huge following on her blog, commented on something that is similar to your query. Because I think it might help, I am going to paste a link here. http://www.mycharmingkids.net/2009/04/finding-new-normal.html
May God bless you and your family as you travel this difficult road.
I remember those days. When the differences between my son and other kids couldn’t readily be seen but little questions were raised in the back of onlooker’s minds. I worried. I wondered how to explain. How to protect my son from the thoughts of others. The words of others.
Some of that still remains. But the other part of me believes that society needs to be more accepting, educated, understanding of everyone’s differences. So many disorders, diseases are publicized. Everyone has a cause. Everyone has a person they love that’s affected by a difference of some sort.
You’ll get to a place, in time, on your own, where you discover that wall to place between your family and all others. That’s all I can say about that. You’ll let in those who need to be, you’ll bounce all others away. You owe no one an explanation. They owe you, us, understanding and acceptance. Remember, if they knew, they’d feel like a heal.
MiaHysteria’s last blog post..Not Me Monday
Carrie,
I am just now reading this post. I get this a lot when we go out too. Especially since Ethan has the trach tube and we have to carry around all of his medical supplies. Its a little more obvious with his trach that something is “wrong” so most people will just stare and smile at him. But there are the few that ask what’s wrong. If I’m having a good day I’ll just tell them that he has a lot of medical needs. If they want more specifics, their eyes usually start to glaze over after mentining Gaucher Disease. Now, I have had my bad days and replied with “there isn’t anything ‘wrong’ with him. He is just a very special boy.” -Ouch, comes out a little hateful. But we all have our days especially with all that we are going through. Hang in there!!
-Tina, KC