Why?
Let me start off by saying thank you. Thank you to all our friends and family who have stood by our side throughout this journey so far. I don't want this to come off as we don't appreciate things because we absolutely do!
With that being said, why do people feel the need to constantly point out how lucky we are?
We have never once said that we're unlucky. We know we're lucky. I know I'm lucky. I have a gorgeous baby girl, an incredible husband, an awesome support group, a roof over my head, and food on the table.
But, how can you, with your little perfect family, your child with no health issues, sit here and tell me I'm lucky. Do you live my life? Do you see my day to day struggle? Do you hear me arguing with doctors to make sure my daughter is getting the best care? Or calling 20 different people trying to get the supplement my daughter needs? Or how about watching nurses carry her off for surgery? You know what it's like to see your 4 month old taken away to be put to sleep for surgery right? You know what it's like to get those horrible thoughts in your head and can't get them out? You know what it's like to see little tears form in your husband's eyes because he's scared? We need to enjoy the time that Arianna is small and can't walk? No, we want to know she will be able to walk. We want to know that she'll be able to crawl, and talk, and laugh, and communicate. We want to know she'll be able to tell us what she wants without becoming totally frustrated. We want to know that every abdominal ultrasound is going to come back ok. We want to know she'll be able to feed herself. We want to know she'll be happy.
So don't tell me that I'm lucky. It would be like your dad passing away and me telling you you're lucky because you still have your mom.
Another thing don't say to me--don't say at least she's healthy. Apparently I think of healthy being different from other people. When I think of a healthy child, I think of a child who goes to the doctor every few months. A child who doesn't need to sleep with an apnea monitor. A child whose weight is not a big concern--if they're a little on the lighter side or heavier side, it's no big deal--every kid is different right? I'm very lucky that Arianna's heart, lungs, and kidneys appear to be working great. I'm very lucky that surgery to have a feeding tube placed is the only surgery she has had so far. But to me, she's not healthy. People always say they want a happy, healthy baby; that they don't care about the sex. So all those people would be totally fine if they found out their child had Down's Syndrome--they're healthy right? No. My daughter is at a doctor's appointment at least once a week. She has a home nurse. We needed to learn CPR before she was released from the hospital. She has medical equipment.
So please, don't tell me I'm lucky. Don't tell me she's healthy.
What you can tell me--wow, I can't imagine. Wow, you guys have a lot going on. Wow. Tell me that this situation sucks because it does. I don't need you to just sit and point out the good things. Oh, she's deaf? Well at least you don't need to worry about the doorbell waking her up. Yeah, I wish that was my biggest concern. Or oh, she eats through a tube? At least you don't need to worry about nipple confusion.
I know people mean well. That's why I don't get mad and say something. But, if you don't know what it's like, don't say anything. If someone lost their husband, I wouldn't say well at least you have the kids to remind you of him. I have no idea what it's like to lose a spouse, and I would never want to. And because of that I wouldn't try to tell them how to fell. I would feel for that person, but I would never try to make them feel better.
On that note...I'm so lucky to have this precious little girl in my life. She's my life :)
With that being said, why do people feel the need to constantly point out how lucky we are?
We have never once said that we're unlucky. We know we're lucky. I know I'm lucky. I have a gorgeous baby girl, an incredible husband, an awesome support group, a roof over my head, and food on the table.
But, how can you, with your little perfect family, your child with no health issues, sit here and tell me I'm lucky. Do you live my life? Do you see my day to day struggle? Do you hear me arguing with doctors to make sure my daughter is getting the best care? Or calling 20 different people trying to get the supplement my daughter needs? Or how about watching nurses carry her off for surgery? You know what it's like to see your 4 month old taken away to be put to sleep for surgery right? You know what it's like to get those horrible thoughts in your head and can't get them out? You know what it's like to see little tears form in your husband's eyes because he's scared? We need to enjoy the time that Arianna is small and can't walk? No, we want to know she will be able to walk. We want to know that she'll be able to crawl, and talk, and laugh, and communicate. We want to know she'll be able to tell us what she wants without becoming totally frustrated. We want to know that every abdominal ultrasound is going to come back ok. We want to know she'll be able to feed herself. We want to know she'll be happy.
So don't tell me that I'm lucky. It would be like your dad passing away and me telling you you're lucky because you still have your mom.
Another thing don't say to me--don't say at least she's healthy. Apparently I think of healthy being different from other people. When I think of a healthy child, I think of a child who goes to the doctor every few months. A child who doesn't need to sleep with an apnea monitor. A child whose weight is not a big concern--if they're a little on the lighter side or heavier side, it's no big deal--every kid is different right? I'm very lucky that Arianna's heart, lungs, and kidneys appear to be working great. I'm very lucky that surgery to have a feeding tube placed is the only surgery she has had so far. But to me, she's not healthy. People always say they want a happy, healthy baby; that they don't care about the sex. So all those people would be totally fine if they found out their child had Down's Syndrome--they're healthy right? No. My daughter is at a doctor's appointment at least once a week. She has a home nurse. We needed to learn CPR before she was released from the hospital. She has medical equipment.
So please, don't tell me I'm lucky. Don't tell me she's healthy.
What you can tell me--wow, I can't imagine. Wow, you guys have a lot going on. Wow. Tell me that this situation sucks because it does. I don't need you to just sit and point out the good things. Oh, she's deaf? Well at least you don't need to worry about the doorbell waking her up. Yeah, I wish that was my biggest concern. Or oh, she eats through a tube? At least you don't need to worry about nipple confusion.
I know people mean well. That's why I don't get mad and say something. But, if you don't know what it's like, don't say anything. If someone lost their husband, I wouldn't say well at least you have the kids to remind you of him. I have no idea what it's like to lose a spouse, and I would never want to. And because of that I wouldn't try to tell them how to fell. I would feel for that person, but I would never try to make them feel better.
On that note...I'm so lucky to have this precious little girl in my life. She's my life :)
People everywhere, not just parents with special needs children should read this. It applies to many other things in life. You are a genius with words Heather. I can't imagine at all how you feel but appreciate your honest, it's refreshing and informative.
ReplyDeletePeople everywhere, not just parents with special needs children should read this. It applies to many other things in life. You are a genius with words Heather. I can't imagine at all how you feel but appreciate your honest, it's refreshing and informative.
ReplyDelete