So today was just another ordinary day. My mom wasn’t feeling well and I told her I would pick up some medicine for her and I had to make a stop at Wal-Mart anyway. So off I went with Leah to Wal-Mart. While getting her out of the car and into one of those huge shopping carts with the seat in front of the cart (seriously the thing is the size of a minivan) Anyhoo, I was strapping her into the seat when I hear an older woman and what seemed to be her daughter talking. I hear her say the following “There are so many special needs kids around here!” “In my day we didn’t just parade them around like they were normal” WHAT THE $%^# DID YOU JUST SAY? Is what I wanted to say but I didn’t. I believe I took the higher road, the road less traveled. Anyway I said loudly enough for her to hear me. “C’mon Leah, let’s go parade around Wal-Mart.” Oh and she heard me because if looks could kill. I waved and said “Have a lovely day!”
Seriously though, what is wrong with people? Why on earth would you say something like that? Why would you say something like that loud enough that I can hear you? I am a special needs parent, that doesn’t mean I am deaf. I realize you have an opinion, I realize you want to share that opinion, but guess what NO ONE CARES!!!!!!!!!
There are things you just don’t talk about as a mother of a child with Down Syndrome. There are things you just don’t say out loud. People think I am strong, people think I was chosen to be her mother, people think that I do a great job at being her mom. But there is a truth that no-one knows, an underlying layer that is waiting to be exposed into the cool air. But I can’t say it, I can’t show it, I can’t be vulnerable, I won’t be. There are things that you just don’t get, things that you just don’t know.
Most days are good, most days are great but there are days when I cry, I cry so hard it hurts to breathe, I cry until my eyes are red and swollen, I cry until there are no tears left to cry.
You wouldn’t know that I worry all the time. I don’t sleep most nights, because I lie awake worrying. Worrying about what is going to happen to her when I am gone. I worry about who she will become, will she have a job, will she meet a boy, will she fall in love, will she get married, will I ever have a conversation with her? These questions just race through my mind all night long.
You would never know that I continually doubt myself and everything I do. I should do this, I should have done that. It’s my fault she’s not doing x, y or z. If only I had done this. Maybe I should do this or try that. It is a constant battle in my mind.
You would never understand that I just need friends. Friends who can help me escape my world for just a bit, friends who can make me laugh and smile. I need friends who understand, I need friends who will call me or text me because the likelihood of me calling or texting is very slim although I do try. My time is consumed by all this special needs. It makes me so happy when my friends accept my daughter and treat her like a little girl because that is what she is.
You would never understand that I need to control the environment we are in or going to. Loud noises, a lot of people in a small space can and will scare my daughter.
You would never understand that I need my family, all of them, near and far. Most of them unfortunately have turned their backs on me since having my daughter which is very sad and heartbreaking. I need family more than ever now.
You would never know how much little things mean to me, the fact that my child has said a 2 or 3 word sentence is like she climbed Mt. Everest.
You will never know how much it hurts me when you ask if I will ever go back to work, or if I am going to “do something to make money” or when people tell me what other people are doing for a living. I loved teaching, I miss teaching but this is my job, it will always be my job.
You may never understand that I am never going to ask for help, ever. It isn’t me to begin with but it certainly isn’t who I am now.
You will never understand that I just want to feel normal, a normal mom, a normal family, I want to just live my life with my husband and wonderful kids and be happy.
Speaking of being happy, you will never understand the pure joy and happiness my little princess gives me everyday. She has a genuine happy personality, she doesn’t judge, she just loves unconditionally. She can make you smile ear to ear and make you laugh until you cry on most days. I am lucky to be a part of her life, lucky to be the one she calls mom. Though my life isn’t “normal” or perfect. I love each moment, the good and the bad and I wouldn’t have it any other way.
It’s World Down Syndrome Day today and I have a few years (almost) 4 of exploring this syndrome. I look back at when my daughter was first born and boy did I not have a clue, not a single one. Down Syndrome is not the ideas or statistics that all the specialists and doctors throw at you as you hold your baby in your arms. It’s not the heart defects, the low muscle tone, the developmental delays, don’t get me wrong it’s part of it but it’s not all of it. I know that there are moms out there who are holding your baby for the first time who have just been given the news that your baby has an extra chromosome. I wish I could be there next to each one of you, to give you a big hug to tell you that it’s going to be okay. I want to tell you that your baby needs you just like any other baby, that your child is going to do so much. I would tell you that she may not walk when other kids do but she will and when she does, there will be no holding her back. She may not talk when other kids talk and guess what that’s okay too because eventually she will and she will have lots and lots to say. There are so many lessons that your little one is going to teach you, so get your pencils ready. I don’t know what your little one has in store for you but I can tell you from my own experience that Leah has taught me the meaning of true-unconditional love. She has taught me patience. She has taught me to trust, to love, to understand and to hope. She has shown me that there is good in most people, she has taught me to smile, to care, to speak up. I could go on and on about all the things I have learned in the past 3.5 years. Just know that this is not a death sentence, this is not the end of your life, this is the beginning. You will explore parts of your life and world and heart that you never knew existed. So love and trust in your little one that it is going to be an adventurous trip but one so worth taking with a fabulous tour guide.
I want to be honest. I want to address the mothers at the playground, you know who you are? The ones who stare at me with pity, disgust, I am not quite sure as I can’t quite read the look through your giant coach bag and your iPhone 6 you have in your face. I was making obvious that these are seriously shallow women, did you get that? Good, moving on. Maybe I am bitter because I can’t afford an iPhone 6 nor a Coach purse, hell maybe I am even a little bit jealous. Money is so wasted on people who clearly don’t appreciate it. Do you know what I could buy for $1,000, I could get an entire year’s worth of clothes, several pairs of shoes, a purse, sunglasses, accessories, and still have money left over, so take that you overpriced Coach purse. Anyway I am wayyyy off topic here. Where was I? Oh yes you, shallow mom at the playground. You barely come up for a glance at your own kid. You saw me coming, you saw my daughter, who yes NEWSFLASH has Down Syndrome. She is the friendliest kid in the world and the cutest if I do say so myself. And your kid well….let’s just say he might want to work on his personality because score he did not in the looks department; hey I said I was being honest here. You and your aggressive, bratty offspring treat us like we have the plague. You treat us as if you or your child have any interaction with us the Down Syndrome might rub off. Don’t worry you can’t catch it. It’s a chromosomal disorder not the Chicken Pox you twit. If you would allow your child to interact with mine it might teach him a thing or two about patience, empathy, kindness, you know the things most parents want their children to be. I can tell at first glance that you are the kind of person I do not want to get to know at all. You don’t even smile at my daughter when she gives you a HUGE hello, not even a crack of a smile, nothing. You must have a seriously miserable life, or maybe you were just having a bad day. I will give you the benefit of the doubt. Fast forward 2 weeks later, well looky who it is AGAIN, you sure get around to the playgrounds, considering you don’t like playing with your children at all, seems like an odd place to frequent, don’t ya think? My daughter again says hello as she does to everyone and yup there it is……Yup it’s confirmed you are a Bitch. You don’t even acknowledge her, you don’t even crack a smile. Good luck with thinking that your kids are the most perfect beings that walk the planet. I watch your son cry as you ignore him, he just wants you to look at him, to notice his existence. Whatever is on your phone screen is clearly more important and he knows that. Learn a lesson in acceptance, just smile at a child that says hello to you, say hello for God’s sake. Would it kill you to smile, kill you to act like other people besides yourself matter? Teach your children, to love, to have respect, to accept, and to have empathy. If you teach these to your kids you will be the proudest mom that ever lived. Right now, not so much. This is how I was feeling after returning home from a playground a few weeks ago. This is how I feel a lot of the time, when people treat us like we are not like them, like we are beneath them. As I think about it now, I realize I would never ever be friends with someone who acts that way towards my child, so no loss, it doesn’t really matter what she or people like her think of me or my family. At the time that it happens, it stings, it hurts, it’s a reminder that we are different. But then I come home and realize that different is good, different is okay by me.
I don’t know how you do it? I hear it all the time. What do these words mean? How do I do what? Mother? Parent? Survive? People seem to think I have it all put together, I know exactly what I am doing, I am some sort of martyr or saint. I am just a mom who happens to have a special needs child who is doing my best to do what is right for both of my children. If you were to peek into the window of my life on a daily basis you would see that I often feel a lot that most people would never even know.
I often feel isolated, I don’t have many friends who are moms of typical kids and I also don’t have many friends in the Down syndrome community. I never have an easy time making friends so this is especially hard for me. I want and need friends in my life.
When people ask me if i will get a job or go back to teaching, it makes me feel like an enormous failure. I already feel like I am not doing enough. I often times feel like I am failing my child and when you say things like that to me it makes me think oh I really am failing, I am not doing enough.
I often feel like I am failing my typical child as well. Am I doing enough for him? Is he getting enough of my attention? Is he getting what he needs from me?
As a special needs parent you often feel challenged and exhausted each and everyday by the rude comments, the stares, the opinions that are not asked for. As moms we just want to live our lives, love our kids, do the best for them and not have to worry about being judged day in and day out. We have so many struggles that you couldn’t even dream of knowing about, yet you seem to have all the answers.
So if you know a special needs mom, just be a friend to them, try to imagine for a minute what they go through everyday and what it must be like to walk a mile in their shoes. Be kind, make the extra effort. Know that it is probably very hard for them to call you or text you or visit you. If you put in the extra effort, you wouldn’t believe what an amazing friendship you could be a part of. Just be there. I know it is hard. I know it is hard to always be the one who calls, who texts, who visits, who makes plans. But they need you and if you are a true friend you will be there to help. You will be there to understand, to get them out of the house for a few hours, to just be a friend.
What they didn’t tell me about Down Syndrome, was that my daughter
-was going to look like me, look like my son, and my husband
-that she would love Peanut Butter and Jelly Sandwiches and Spaghetti
-that she would be sassy
-that she would have a strong personality
-that she would love to make me laugh and smile
-that she would love Mickey Mouse
-that she would learn to walk
-that she would learn to talk
-that things would eventually be “normal”
-that instead of getting to know her diagnosis I would start to get to know her
-that I wouldn’t be able to imagine my life without her
-that her smile would melt my heart each and every day
Do you know what I wish?
I wish that I could be someone who could visit mom’s who have just given birth to a baby with Down Syndrome so that I could show them Leah, so that I could show them it’s going to be really hard in the beginning. But one day you are going to wake up and Down Syndrome won’t matter. Down Syndrome will not define your child, Down Syndrome will be something you have to deal with, yes, but it gets so much easier.
I wish I could tell the parents that are crying that it is going to be okay, I wish I could hug them and say you are going to be fine, your baby is going to be fine. You can do this, you will do this, you will be okay.
I wish I had that when I found out my daughter’s diagnosis, I wish there had been more positivity, I wish that someone hugged me and told me that it is going to be okay.
I thank God that she is here, I thank God that she is a part of our lives now and she makes our family complete. Maybe someday I will make my dream come true and be able to talk to other moms and let them know that it is all going to be okay.
Did you know? That is the question I get most often from people that bugs the crap out of me. Did I know what?????? Did you know she had Down Syndrome before you had her? No, but what does that mean, what does it matter? To me that says, well if you had known you would have aborted her.
I don’t know how you do it!! I don’t really know either but I just do it, what other choice do I have. She needs me and I will do everything I can to give her a wonderful life.
My children are my life. My daughter is my daughter not my Down Syndrome daughter. Yes she has Down Syndrome but I will not define her but her diagnosis.
It was a Friday October 21, 2011 a chilly afternoon around 4:30 or so and I was in Westchester, NY with my daughter at her weekly cardiologist appointment. He looked concerned, he looked worried, she needs the surgery within the next few days he said. I think I almost passed out, I remember there was a med student in the room, he got me a chair and gave me a hug and a glass of water and told me everything was going to be okay, I will never forget him and what he did for me that day.
The cardiologist came racing back in the room, he was on his cell phone with the surgeon, the surgery would be on Wednesday October 26, 2011. I had 5 days, 5 days to spend with her, 5 days to love her before I had to turn her over to the surgeon. That was the hardest 5 days of my life, knowing what was ahead, knowing what we were going to have to go through. I will remember this day for the rest of my life. Just look at her now.
Down Syndrome is my life now, if you had asked me when I was 25 and just getting married if I thought this would be my life today, I would happily disagree. Now it’s just the way it is, we live with therapies, with delays. We also live with happiness, the kind that no one tells you about. The way she makes us smile from ear to ear, or the love we feel in our heart for both our children becomes magnified. We know how lucky we are to have this little piece of wonder in our lives.