Being a Mom to a child with Down Syndrome

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.

Tour Guide on a Trip to A Fabulous Life

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 Am A Special Needs Mom who Doesn't Feel Like Super Mom Project 365 Days 142-152

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.

PROJECT 365 DAY 107-108 GAVIN MCINNES NEEDS TO GET A CLUE

Gavin McInnes, do you know who he is?  I have no idea who the hell he is nor do I care.  I saw this video of him on Fox News, comparing Al Sharpton to a retard or a person with Down Syndrome.  No sir I don't think anyone really cares who you are or what you do, but as a special needs mom I care that you used a public platform to spew your ignorance. You should be ashamed of yourself.

Project 365 Days 82-87 What they Didn't tell me!

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.

Our Lives as We Know It

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.

Mommy Time Monday- One Fish Two Fish

Our weekend was spent with family visiting from NJ.  The kids swam in the pool, we went to the aquarium, swam some more and went to the outdoor mall here.  While we were at the aquarium the most amazing thing happened, my daughter who will be 2 in just a couple of weeks, was looking at the fish and did the sign for fish.  I was so happy and so proud of her, I could have cried.  It is amazing how something like that just makes it all seem so worth while.
In other news this mama needs a break, I am thinking I may schedule myself a hair appointment to get a trim and a coloring and schedule some me time! Hope everyone has a nice Monday!!!!!!!!!!

Our First Buddy Walk

I was so happy to attend our first Buddy Walk this past weekend. We had a very nice time, it's like you get an invitation to be a part of this group that you never wanted but are so happy that you did. All the people are wonderful and we had such a blast walking for such beautiful special people.

BABY'S FIRST EASTER

Yesterday was my little girls first big outing and her first Easter.  With Spring comes, new life, new awakenings, new moments to treasure. We had our first vist to someone's house since August, it was a wonderful feeling and a little nerve wracking at the same time. I can't wait to have many more outings and the chance to make wonderful memories with my little family.

We hope everyone had a wonderful Easter !!!!!

Stop Being Fearful

 As my daughter continues to thrive and do things I never expected her to do, as she continues to amaze me each and every day it makes me think about my own self and expectations for myself.  If she can get through all that she has and then some, surely I can accomplish my own goals that I have set for myself.  I have already accomplished a lot in my life but now I seem to come up with too many reasons of why I can't do this or shouldn't do that. There is always money which is a legitimate reason of why I cannot accomplish things.  I would love to start my own party business, where I would make all the decorations, invites, paper products, etc, but one needs money to start such a business, so my head fills with all of these wonderful ideas of what I would create, what I would sell, how successful I would be but then the negative thoughts flood my mind (the you would have to make a lot of things to take pictures of and the things require supplies, which requires money and so on and so forth,) it is a neverending snowball effect. I want to learn photography, to play the guitar. to do all sorts of things but my thoughts get in my way, paralyzing me from moving forward.  To me all of these things are wants, not needs and are therefore frivolous.
I have fears, fears that linger in my heart and my soul, fear of things going wrong, fear of the rug being pulled out from under me as it has so many times before, the fear of the unknown.  I hope and pray that these fears subside in me, but after being hurt and having horrible things happen, I fear that it will always be that way, the fear has made a permanent dwelling in my being, it lingers there and feeds off my feelings of dismay.  I often wonder what it feels like to be carefree, to not have a worry in the world. I guess my first step is to stop being fearful, but how to do that is the question.

Don't Feel Sorry For Me

We got our first look today, it was probably the second or third time that I have taken her out since she has been "allowed". I had to go to the doctor so I took my little princess with me.  There in the waiting room with a "normal" baby, probably about 2 weeks old, and screaming her head off, the mother kept glaring at me and then at Leah, giving me the phony, I pity you smile.   She gave me the look, you know the look, the "Oh I am so sorry that you didn't have a normal baby like mine look," the "oh you poor poor thing look," the pity look.  I have been waiting for the first time this would happen, expecting it to hurt like hell, to make me burst into tears, but ya know what it didn't do any of that.  It really pissed me off actually.
I don't need your pity, I don't need you to feel sorry for me or my baby.  She is going to do things just like any other baby just in her own time.  She has been through more in her short little life, than any "normal" baby will experience in a lifetime.  She is brave, she is strong, she is determined, she will do whatever she puts her mind to, so no do not pity me, do not pity my family, do not pity my baby, she will surprise this world, she will prove everyone who tells her she can't wrong.  And to people who give those looks to mothers like me, keep your pity for someone who needs it, because I do not need it, there is nothing in my life to feel sorry about, my life is better because she is a part of it, I wish for everyone to experience that kind of love just once in their lives, and then you will understand, then you will never look at me like that again.

Springy Spring

So it is Spring and we are allowed to leave the house, FINALLY.  It has been a very long almost 8 months of being stuck in the house.  So now that she is free to go out, I am afraid to expose her to the world, afraid of the stares from strangers who are ignorant, afraid of the germs out there, afraid of the unknown.  I know that I can't protect her from everything but I am her mother aren't at least supposed to try.
So I will take her out and face my fears head on, there will always be germs and there will always be ignorant people, so I guess we will take the good with the bad and live our lives to the fullest.
Happy Spring Everyone!!!!!

Happy World Down Syndrome Day

Although she doesn't know it yet today is a very special day for my baby girl and for so many babies, children and adults like her.  It is a day to celebrate the 3rd copy of the 21st chromosome, 3-21 is World Down Syndrome Day. It is almost 8 months later since I brought that precious little blessing into the World, she is such a blessing and a joy that the whole world wants to celebrate her and others just like her.
8 months ago I never would imagine that today I would ever be celebrating a day such as this and I am embarressed to say that I never knew it existed.  So I feel like it is my life's chore to make people aware, to make them see just how special and wonderful my daughter is and how special all people are with Down Syndrome.  As my baby girl gets bigger we, will do something special on this day each year but for now I will just love her, and give her extra hugs and kisses for truly making my world a better place.

I'm A Guest Blogger

I am a guest blogger for Down Syndrome Day on a blog called Bookaholics, go check it out.
http://bookaholicsbkcl.blogspot.com/2012/03/not-what-i-expected.html

Thank you to Mist @ Bookaholics!!!!

Stop Being Judgemental

Down Syndrome Day is March 21, 2012.  I can't imagine my life without my little girl in it and I feel that my life with her is better than it was without her.    I think I had a hard time when I first brought her home because it was the constant questioning from people, "Didn't you know before you had her?"  No I didn't and if I had it didn't matter in the least I was keeping my baby no matter what, I was giving her the chacne at life that she deserved.  I think what I want people to know is that no matter what diagnosis your baby has, he or she is still a child, he or she is still a life and they deserve everything that life has to offer.
I know that people will never ever understand until they have walked a mile in my shoes, you will never know the love I have for my children, you will never know what it is like to have a special need child unless you are living it.  So my advice for this Down Syndrom Day, would be please do not judge me, my baby or my family.  If you don't understand please get informed, there is plenty of information available and I would be happy to put you in the right direction.  So I guess what I mean is, do not question or judge until you have all the facts and until you have experienced a day in my life.

If I Knew Then What I Know Now

If you could go back to right before you had your baby with Down Syndrome what would you tell yourself?"  It got me thinking about the question what would I tell myself if I knew then what I know now. I would say that something is about to happen to you, to your family, something that you are not prepared for but it is going to be okay, it is going to be fine. A wonderful little girl is about to enter your life and she is going to make it a brighter more loving place to be.  I would tell myself I know you are scared, I know you blame yourself and it is okay to feel these things but know deep down that God chose you to be this little girl's mommy for a reason, he knows you are strong and loving and will be there for her no matter what. She needs you, she needs your love, she needs your help, she needs you to just love her, love her for who she is not for who she was supposed to be or may never become. I would say she is not what you expected, she is so much more.  She is going to teach you things about life that you took for granted or never understood before.  She is going to teach you how to appreciate life and how to love. I would tell myself that because of this little girl you are going to be a better person, more giving, more caring, more loving.  You are going to be all that you can be all because of her. She is going to be s joy to your family. She is going to make your family stronger.
Don't be scared she is going to get through the heart surgery and amaze everyone.
She is going to amaze you with how much she can do.  She will do so much more than the experts tell you she will do. I would tell myself that I am stronger than I know and that she is stronger than I can ever imagine and we will all be alright. I would tell myself that you will love this baby girl more than you can possibly imagine.  She will teach you to love better to hug harder and kiss longer.  She is going to change your whole world as you know it and make it even better.  You will appreciate how precious life is.  The road ahead might be scary because there is so much more that is unknown but don't worry about what you don't know, just love her and she will love you back.  Enjoy life in this very moment, enjoy each one as they come and cherish them.

PT and After School Activities

So my little guy is trying his hardest to find an extra-curricular activity that he will enjoy.  Yesterday we tested out karate, in the car he said to me, mom I am not sure that karate is for me, I didn't really have too much fun.  So onto the next thing, in search of swimming lessons that do not break the bang because as he put it, "I think swimming is my thing mom." Okay if you say so,  he was so cute in karate and he did really well for his first try, do I make him do it anyway or just keep trying to find something that fits him.  Hmmm.  Little Miss is doing really well at her PT, getting stronger everyday.

ZZZZZZZZZZ

So we have been lacking in the sleep department lately.  Little Miss has decided that sleep is not an option at 2 am- 6am and really does not feel the need to nap during the day, I think that she believes that she is truly going to miss something super important or monumental. So I have tried the cry it out method, I have tried lying in the room with her, either way she will not nap, I take that back she napped the one day I just let her cry it out but I feel terrible letting her cry but I know that at 7 months old she already knows this.  Why do you ask? Well when I walk into the room as she is "crying" and I use quotes because there are no tears and suddenly she has a big ol goofy grin on her face, so I do see an academy award in her near future, because she totally has her mommy wrapped around her little finger and she knows it.  So what have you done to get your babies to nap or sleep through the night, this tired mama can use some advice.

7 MONTHS

7 months old today, and I will say it again, I cannot believe I am sitting here now, remarking on this wonderful day and how truly far we have come.  Sitting in her hospital room watching a machine breathe for her seems like a distant memory yet as if it happened yesterday.  If my being today could talk to me 5 months ago, I would tell myself not to worry, not to fret, not to shed any tears but happy tears, because you are going to be alright, you are all going to be just fine.  There is light and happiness at the end of this gloomy tunnel waiting for you, just be brave, be strong and it will all work out in the end.
A friend told me while I was in the hospital with my little girl "You are going to look back on this months from now and wonder how the hell you got through it all."  Well friend today is one of those days, how did I get through it all, how did she get throught it all, how did our family and friends get through it all?"  Strength, strength I never knew I had, bravery I never knew was inside of me.  As I look at her today rolling over on her belly, so alert, so strong I can't even beleive she is the same baby.  She went from the baby who slept 22 hours a day, to the baby that refuses to take a nap, she went from a baby who hardly ate an ounce of food to eating and drinking all the time and getting excited about it.  She was the baby that never cried and now boy does she let you know, when she's happy, hungry or just wants to have a chat.
So to all those moms and dads that are going through what my family and I have gone through, be strong, there is hope, there is light at the end of the tunnel, you just have to work really hard to get to the end of it, and on the other side waits a beautiful life with a beautiful baby who really just wants to be loved and cherished.

Noises, and Sounds and Math Oh My

Ma Ma Ma, Ba Ba Ba, Da Da Da.  These are the sounds that we are trying to get our little girl to start saying.   She does a whole lot of yelling lately and sometimes seems to utter those sounds, but I cannot be quite sure.  As they tell me that we should be hearing more of those sounds from her I start to worry because we are not really hearing them often or at all for that matter.  I keep telling myself that she will do it eventually, she will make those sounds when she is good and ready, but it is still hard waiting and hoping that she will do all the things that she is supposed to.  I do know this the day I hear her call Mommy or Daddy will be the most wonderful day and I can't wait for it.In other news I have discovered that my son is quite the math whiz, he keeps bringing home fabulous grades and I couldn't be more proud of him.