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.

Rich Manhattan Moms Walk A Day In My Shoes

I am a special needs mom and I am responding to the article in the NY Post.

http://www.nypost.com/p/news/local/manhattan/disney_world_srich_kid_outrage_zTBA0xrvZRkIVc1zItXGDP


Dear Rich Entitled Manhattan Moms,

You want to pretend to be a Special Needs mom for the day so that your little darlings don't have to stand in line at Disney World.  You poor poor thing, it must be so hard to have to stand in line for any longer than 5 minutes, it must be so hard to have to discipline your children for more than five minutes while waiting in line, oh and what about the heat and the sun, we wouldn't want you or your offspring to break a sweat or heaven forbid get a sunburn, I am so sorry you have such a hard life, it truly must be so hard to be you.
If you want that "Special Pass" at Disney I truly believe you should have one, but first there a few requirements I think you should have to complete before you are awarded the "Golden Ticket" as you seem to think it is.
I want you to walk in my shoes, I want you to see what it is like to give birth to a baby, a baby you have wanted for so long, and have them tell you that she has Down Syndrome and if that isn't bad enough she needs open heart surgery before she is 3 months old or she will die.  I want you to know what it's like to have to drive your baby to the hospital knowing they will cut open her chest and operate on her heart.  Sit by her bedside night after night with no sleep praying to any and every God to help your sweet precious baby. You are probably thinking clearly that is enough to earn the ticket, well nope I am sorry you are not quite there yet.  You will also be required to visit numerous specialists with your child, for example you will have to bring your child to the cardiologist once a week for a few months, sometimes twice a week, then you will graduate to every two weeks, then once a month, then every 3 months, then every 6 months then finally you will only have to go once a year, and that's only the cardiologist, there are endocrinologists, pediatricians, Ophthalmologists, Neurologists, just to name a few.
Wait not so fast there is a lot more, you will have to fight with insurance companies and doctors and anyone else who is not being fair to your child.  You will have to be your child's advocate.  You will have to always be there, can you do that, can you cancel your fabulous lunch dates, your yoga classes, your shopping sprees, your spa dates.  You will be lucky if you have a haircut once a year, so embrace the pony tail it will be your new friend. There will be no time for what you want or need, it is all about your child.  So I am sorry but you just might go grey or look unkempt.
I hope you are okay with being stared at because this happens a lot, people will stare at you  and your baby, not because they are thinking wow she looks awesome for 36, no it's because either they feel sorry for you, for your child or they are thankful that they are not you, maybe who knows why they are staring but they do and they do it a lot.  Oh there are also the rude comments, you may need to toughen up for this, hope you are able to let things roll off your back because people can be really mean and hurtful.
Oh we are not done yet, get cozy because there is more.  I sure hope you had your Wheaties today because now you have to deal with helping your child do all the things that "normal" children do with ease each and every day.  Now you have to have all of her therapist appointments, there is Speech because she is almost 2 and still doesn't talk,  then off you go to the Physical Therapist because she's 2 and she still isn't walking.  Occupational therapy is going to help her too because she is 2 and still can't feed herself.  In between therapies you will do everything all of those therapists have suggested everyday because you are hoping and praying that by the time she is 3 maybe she will do all of these things.  Maybe she will walk, feed herself, and say I love you Mom by the time she is 36 months old.
Getting tired, well there is also cooking, cleaning, driving your other children back and forth from school and activities, helping with homework, grocery shopping, Dr appointments, being a good wife, dinner time, bath time, bed time, laundry, etc. Then you get to go to sleep and get up and do it all over again.
Now pay attention, this is the most important part.  You are going to worry ALOT, because your child is prone to getting multiple illnesses, and the thought of your child going through anymore hardships is heart breaking.You will never want to send her to school because kids can be cruel and the thought of anyone making her feel bad about herself numbs you.
Okay so here is the really important part, I really hope you have been paying attention.  You are going to know true love, you are going to know how to love unconditionally, she is going to teach you things that you never knew about life, about love, about what is important.  As soon as you have that feeling, then you may have your special disney pass.  Maybe after spending a day in my shoes or any special needs parent's shoes, you will look differently about what you are doing.  Maybe you will be so thankful and happy maybe you will realize how truly lucky you are to have a healthy child.
Yours Truly,
The Mom of a Special Needs Child

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.

Appointments A Plenty

Physical Therapists, Speech Therapists, Specialists, oh my.  Never did I dream of any of this when I was pregnant with my little girl.  Although all the appointments and doctors can be so overwhelming I am glad that I had her during a time when there is so much available to her and so many people willing to help her. She attracts people wherever we go, she has such a bubbly little personality that people just flock to her.  I admire that about my little girl, at only six months old she has the ability to light up an entire room.  I love her so much.  I hope everyone has a fabulous weekend. Don't forget Down Syndrome Day is coming soon, do something special for someone you know who has Down Syndrome or has been affected by Down Syndrome in some way.

My Place In This World

When you are in the midst of having a baby you are submerged in it, surrounded by it, you eat breathe and sleep all things baby.  You dream about the little girl inside you and you think about all of the things you are going to do with her, all the pretty clothes you will dress her in.  When you awake from that dream into what you believe is your life's biggest nightmare at the time, "Your daughter has Down Syndrome and will need open heart surgery."  This was certainly not the dream, not the hopes, not the wishes that were had and made upon shooting stars in the night sky.  This was happening to someone else, certainly not me, how could it, I am young, I did everything I was supposed to do, I did everything right.  How did this happen to my little girl, how did this happen to me? Then someone sent me something, a beautiful poem.  I read it and at the time didn't really think much of it, just thought it was some other way that people were trying to make me feel better, people who didn't understand.

The Special Mother
by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a disabled child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

I read this again today and I cried harder than I have cried in months, I understand it now, I understand my purpose in this world, to be the best mom that I can be to both of my wonderful kids.

I THINK I CAN, I KNOW I CAN

It is hard to believe where we have been and what we have accomplished in the past few months.  My little cookie will be 7 months old next week.  In her 7 short months of life she has overcome more hardships and obstacles than most people do in a lifetime and she has done it all with no complaints and a gummy grin on her little face.  This morning I realized during her weekly physical therapy sessions just how far she has truly come and I could have just burst in to happy tears.  She is doing all of the things I questioned that first night in the hospital after giving birth to her, would she do the things baby's did?  The answer is a triumphant YES.  She is doing things that other baby's do and then some, only she is doing them at her own pace, the pace she sees fit for the moment, maybe she will stay at this slow and steady pace, maybe she will speed things up, we may never know, for it is all up to her.  As for now I am at peace and so proud of my baby girl and the progress she is making, can't wait to see what she will do next.

At Her Own Pace

Babies with Down Syndrome are often signifigantly delayed when it comes to meeting all of those baby milestones.  It is hard as a mom to see other babies around my daughter's age and not say "oh she/he's crawling, talking, standing etc." 
Little Miss will be 7 months old and has just mastered the art of holding her head up while on her belly and rolling over from back to tummy and tummy to back.  She is doing really well for a baby with down syndrome according to the Physical Therapist, but it is still really hard.  I sit and think when will she crawl, when will she stand, when she will walk.  I know that she is doing the best that she can for a little baby who has been through all that she has been through.  She will do all the things that other babies do, just in her own time.  A friend sent me this creed that put it all in perspective for me.

Down Syndrome Creed

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

I think this pretty much says it all.

Able Not Disabled

People with Down Syndrome have their own unique talents and abilities just like everybody else.


I worry a lot lately, I worry about her, I worry about me, I worry about my little family, all the what if's go streaming through my head while I lay awake at night. I am a worrier, it's just what I do.  But I look to other people's success stories and triumphs to get me through the tough times.  I hope that my blog does that for at least 1 person.  Hope everyone had a wonderful day.