All alike and a little bit different!!!!
Hey Nice Socks!!!
Thanks I wear them every March 21st. A.K.A…… WORLD Down Syndrome Day!!!
Down Syndrome, What does March 21st have to do with down syndrome?
Down syndrome is also known as trisomy 21. trisomy (3) and 21 for the representation of the 21st chromosome. See someone one with down syndrome has 3 copies of the 21st chromosome and most, but most definitely not all people only have 2 copies of each chromosome..
How many chromosome do people have?
Most of the world population has 46
What do you do for world down syndrome day?
Some people wear funky bright, or mismatched socks…..
SOCKS!!? Why socks?
From what I hear is its because they kinda look like a chromosome in a petri dish, (You know science labs and super smart stuff). And by wearing bright bold funky or mismatched socks it brings attention to yourself so you can say, “I rock my Socks for someone with down syndrome.” Its to bring awareness and acceptance, its silly but it works. (High to the 5, to the one who started the sock trend) Plus socks are socks, right? Just like people are people. Even if we are made a little bit differently we all have the same feelings.
Do they do anything else for world down syndrome day?
People also do random acts of kindness, where blue and yellow, and most of all we CELEBRATE the people who are in our live that have down syndrome.
Who gets down syndrome?
People don’t GET, down syndrome. (And people don’t “get” down syndrome) It happens during the process of being created. Just like your color of hair is created and if you have freckles or not is created. Down Syndrome is just like a lucky 7 in a casino, or the beautiful rare red-headed green-eyed girl. It just Happens, nothing can be done to get it, and your can’t do anything to create it.
So is down syndrome cool?
Are you cool, aren’t my socks cool enough for you to say “nice socks”?
Yes, Down Syndrome has many ways of being cool.
Okay thanks, now I know about Down Syndrome and next year ill wear my socks.
Down syndrome affects people of all kinds, people of all race, all color, people from all over. So WORLD DOWN SYNDROME day happens every year on 3/21. March 21st, to represent the 3 copies of the 21st chromosome.
HAPPY WORLD DOWN SYNDROME DAY FROM OUR FAMILY TO YOURS
Perspective Gained:
WOW…..If there was one word to describe my experience, “educated” would be it. I never imagined returning from Indy with this much of a better understanding about Down Syndrome. I did expect to have a little more understanding, but never had I imagined this much. I wanted to go to this convention to gain knowledge on how I could better understand things like; Behavior, why speech is so difficult, the medical issues in Down Syndrome, and the best ways to teach my child and those around me with down syndrome to learn. I feel like I seen the TRUER identity of Down Syndrome and not the misconception’s as I have been told.
This being my first convention to attend I went solo, leaving my husband and daughter at home with the assistance of Grandma (oh do we love grandmas). As for the initial thought of going I figured it would be easier to focus on the materials if I didn’t have to worry about the distractions of, how is the family doing and should I go check on her, constantly being in the back of my mind.
I was wrong.
Not having my family was the hardest part for me. I seen so many little kids and babies and each time I would think of Brooklyn my sweet little rascal, and I’d think, “dang I wish she was with me.” Often times I would talk with families and as Id turn to walk away my eyes would swell with tears, unwillingly they would flood. Other times Id be in the middle of a class and think of her and it would happen.
I had no idea this could happen, especially to me. Seriously!!! I have traveled alone numerous times (not since being a mom) and things like this never have happened before. I truly think I got home sick, and I didn’t think that was anything real either. I managed to get through Indy without too many tears by having gained great friends through the Internet whom I met there.
Friends Gained
With the support and encouragement from specifically 2 moms that I have been Lucky enough to call friends for sometime now in what we know only as an online virtual world. Launa, Michele you girls ROCK 🙂
See there is really something magical about the internet. I have been in this group on facebook, Actually I am in many amazing groups on facebook and have become “friends” with so many amazing moms. These moms give a kind of support that I NEED, a kind of support that is so vital to simply getting through to the next day sometimes, a kind of support that is hard to get “in real life.”
Until being at the convention.
HELLO!!!!!! to my beautiful mom friends!!!. You are all just as amazing in person as you are on line, and Brandi next year Brooklyn can meet Seth (hoping we go again). I had heard the term “family Reunion,” prior to going to this convention and I can see why people say that. I feel this convention is something that families really look forward to. A place where friends become better friends and families really do create life long memories. A Place where online friends who you have cried many tears with, can meet and give you a hug. In. Real. Life.
Knowledge Gained:
Paula Kluth
Some classes were very packed.
My Primary focus clearly was how to educate myself to help my daughter. But I gained knowledge that I feel if I keep it to myself that i’m being selfish. So Id like to share with you little tidbits of what I wrote down and remember..
Behavior, Speech, Gross Motor, Reading and more….
{REMINDER I AM ONLY A PERSON TAKING NOTES}
Behavior
“The only way behavior is reduced is to replace it with something else”
- -look at what the action before the bad behavior is and try to find a trigger
- – create or teach a behavior that you want to see by reinforcing the positive behavior as good behavior
- -find what motivates your child to behave correctly and continue to reinforce
- -don’t put child into timeout put their favorite possession into timeout, ie, doll, truck, bear, blanky. your not giving the child any chance to learn the lesson while sitting in a corner.
- -Educate and reinforce the correct behavior you want to happen.
-2-to-1 Rule for every behavior we decrease with punishment we must increase at least 2 alternative behaviors with reinforcement
if you need a certified behavior check this website : http://www.bacb.com
-recommended to look up behavior phenol type (down syndrome)
Gross Motor
- -one of the reasons why physical therapy is so important is to minimize the development of abnormal compensatory movement patterns that children with down syndrome are prone to getting.
- -Feet first, it’s highly important to watch for even the slightest pronation. Giving the child support gives the child confidence for walking and talking.
- -physical therapist should also be trying to build your child’s strength in the appropriate muscle groups so your child develops optimal movements.
- -Posture has so much to do with speech articulation because how the body aligns plays a major role in how you speak correctly.
- -Inclines are great for building ankle strength
- -When a child is sitting keeping their feet from dangling helps to reassure confidence.
- Physical therapy isn’t a tool to help your child get to a milestone faster, it is a tool to help your child learn and build correct muscle core strength properly.
- Here are a few post walking skills we will be working on: walking uneven surfaces, up and down curbs, fast walking, and balance beam, bouncing, and squatting.
- Pronation is the main cause of instability, even the littlest bit can make it hard to walk.
_check out Be beautiful be yourself dance program
Speech and Reading
- -To learn there must be opportunity to learn, give time to answer
- O.W.L (observe. wait. listen)
- -start with 5 mins a day playing the matching game.
- match picture to picture, then learn picture to word, then learn word to word.
- Using an alphabet strip that is letters only helps a child to learn the letter without the distraction of a picture with the letter
- Be clear with letter pronunciation its vital to teaching language
Phonological awareness skills (phonics)
ABC Phonics Animals writing
Zoo Phonics http://www.zoo-phonics.com/
Smarty Ears Custom Boards
http://www.alphabetsoupomtherapy.com/
OVERALL HEALTH– while there someone told me that the reason so many become over weight is because once puberty starts the metabolism drops. I am not sure how much if any truth there is to this but it makes a little sense but This is information I wanted to share and try and get input and feedback on. It something ill be doing research on.
Conclusion
I know I could keep sharing my notes but really I am not sure how useful my chickenscratch is to anyone and or if it makes sense so I’ll conclude with this:
I GAIND a peace of mind and better understanding on how to give my daughter the best tools to help her grow, learn, and be the best person she can be. I will highly recommend going to a convention if you can and I too will be trying to go again.
Thanks for reading and now here is a few pictures I took while there its people I met and some great organizations to look into…
Star David and the Producer of the movie Milan Chakraborty from the movie Produce: Where Hope Grows
https://www.facebook.com/ProduceTheMovie
I asked David,” what was the best part about doing the moive?” and he responded with this “when ever the ladies look at me I get lost in their eyes.” < – – > it was really a very sweet comment so I asked him to write it on a card and sign it….and He did. 🙂
Come on now you know you want one… 🙂 JW Marriott had a great little sports bar with awesome bartenders.. :)*
Great corner view room
I won this from the Angels in Disguise booth drawing. Dan and Penny both great people. https://www.facebook.com/SupportTheSmile
And….
I picked up a cute little shirt from the https://www.facebook.com/DownSyndromeDiagnosisNetwork for Brooklyn 
I do what I do for you my child… ❤
And can’t leave out getting a hug from this guy
Tim 🙂
https://www.facebook.com/timsplaceabq
Also lastly I can’t leave out Stand up for Downs https://www.facebook.com/StandUpForDowns These guys were just overall good people to talk to and funny. :)P
I met some outstanding people with down syndrome while there and it was an overall great experience. David is a movie star, Tim is a restaurant owner, and I met a clothing designer Ashley DeRamus www.ashleyderamusfoundation.org
I seen adults with down syndrome being independent, being in love (that was the best for me) being themselves seeing that people with down syndrome lived “normal” lives, like you and I. Overall I was truly inspired and set at ease for Brooklyn’s future. I was educated and given some great tips and tools to work with.
Thank you NDSC and every one of you amazing ladies who I have connected with on line and now in person.
Let me start by saying I knew little to absolutely nothing about intellectual disabilities before my daughter was born(birth diagnosis Down Syndrome). I had only heard of epilepsy, ADHD and autism. And remember Chris Burke (Corky) from Life Goes On as being “different”, but didn’t understand it was down syndrome until now, years after the show.
Do you know there are 20+ intellectual disabilities? I didn’t, and still don’t know much about all of them, but I am learning.
I am learning first hand, as I experiencing being a parent to my child with an intellectual disability. Society has made it hard. Hard to be accepted, hard to be included, and hard to be appreciated for the things she can do.
I knew nothing about intellectual disabilities before my daughter was born and I feel ashamed for that. I never knew the fight parents have to go through to get their child included, or to simply to be accepted by the outside world. I never knew how hard it was to try and enroll a child into a school that didn’t accept “different”. I never seen that look on a child’s face who wants to be in the school play but can’t, or wants to learn to play an instrument but is never given a chance. I don’t want that to be my child, or any child for that matter.
It’s because of this, that I am on fire to help make a change. It’s because my daughter has down syndrome that I Take A Stand. I take a STAND for her and every other person in this world that has an intellectual disability. I Take A Stand so everyone can be accepted as who they are, because who they are is a beautiful individual. Being different is being Unique. “I take a stand to be EXTRODINARY because I’m not ordinary”.
“By taking a stand, you’re promising to do your part to create a world where all people are valued and can thrive. By taking a stand, you’re telling your friends, family, and community that you believe in a world that accepts and includes people of all perceived differences”.
Special Olympics World Games Los Angeles 2015
Follow the below link to join the Take A Stand campaign
http://la2015.tfaforms.net/318291
I celebrate different because it’s the differences in the world that makes each person a unique individual. Its the differences that make us have our own creativeness and curiosities, our own styles, and taste. Our differences make us who we are. It creates our personality. It makes us stand out so we are not all the same petal on the flower.
I celebrate different because my daughter has down syndrome, and because I too, believe everyone should have that equal opportunity to learn, play, sing, dance, write, play sports and go to College.
Who doesn’t feel the need to be accepted, or included into school plays, or want to earn a paycheck so they can buy what they want, when they want.
I Celebrate Different and choose to Take A Stand because we are all people. And every PERSON deserves the same opportunity. No matter your gender, your color, or what language you speak, or don’t speak, hear or don’t hear, see or don’t see. If a person believes in themselves and wants to do something, give them a try.
Take A Stand
#TakeaStand
http://wecelebratedifferent.tumblr.com/
When’s the last time you stopped and smelled the roses? For us it was September 28th, 2012. The day our daughter Brooklyn, better known as “Boogie” was born. You see, Boogie has Down Syndrome also known as T-21, and 21 has been our Love number. My wife and I started dating on the 21st, engaged on the 21st, found out what sex our baby was on the 21st, and married on the 21st. To us this was destiny. She was meant to be ours in this way. Soon after our minor relief, the doctors informed us Boogie would not be able to feed off the breast because of her low muscle tone, and that they would need to place a feeding tube into her throat through her nose. She will not be released from the hospital when we are, and that a family room will need to be set up if we wanted to stay with her. She will need surgery on her heart within the first year because her heart valve won’t close on it’s own, and possibly need surgery on her intestines. One by one Boogie defeated the odds the doctors had against her. She latched on to her mom the first try, surprising all of the doctors. She was released from NICU the next day into our arms just in time for her first U of O Ducks game. And after the x-rays and ultrasounds, both her intestines and heart came back perfect, with the heart valve expected to close on it’s own in 5 days. 3 days later, as a family, we were released to the world. Boogie was a success story from day one. Like the rose that grew from concrete.
For the next year and half we struggled. We struggled with Early Interventions, the core source for finding in home PT, OT, and speech therapies. Because of Boogies low muscle tone, we pushed her performance a little harder than we probably would have, had we had a mainstream child. I think because of her Down Syndrome we didn’t expect less of her, we expected more, much more. In our eyes, E.I. had set the bar too low for Boogie. Searching the internet and books specifically on PT, OT, and speech for kids with Down Syndrome, we found ourselves more knowledgeable and ahead of the therapists, surprising them with each visit of a new milestone met and conquered goals that were not yet expected. I’m happy to say they have raised the bar for her but we will always keep our bar a little higher. We struggled with the worlds view on us. From family to friends. From strangers to coworkers. “I’m sorry,” were tough words to hear instead of, “congratulations.” More so from a family member than a stranger when referring to our child when we tell them she has Down Syndrome. The look of denial on our friends faces when they say everything will be ok. Kind of reminds me of a crying clown, a happy smile and remorseful eyes. Strangers noticing Boogie not doing what their kid, at around the same age is doing, and asking what’s wrong with her, having to explain she has Down Syndrome. We struggled with ourselves. Overcoming the acceptance of living with Down Syndrome, but carrying pride we are raising our daughter who has Down Syndrome. We have learned to care less what people think of us because of her. We have stared adversity in the eye, not stopping our dreams for her, but expanding them further. We have grown as human beings seeing a world we would have never known if not for her. Down Syndrome is not a haircut, a tattoo, or a pair of shoes. It can’t be changed, covered up, or go in and out of style. Down Syndrome is the heart, the soul, and the spirit of this family, and we love her for teaching us that. September 28th 2012. Yup, that was the day we started to smell the roses and we haven’t stopped since.
🌼 From the moment we were told Brooklyn has Down Syndrome all I remember hearing from my doctor are the words “she won’t, and she can’t, and its doubtful”. I knew right away that I would not believe it. I knew right away that She Can, and She Will. I knew I had to set the bar high, for the expectation of her development was already so low. Being a new parent, a first time mom I really “knew” nothing. Specifically nothing about Down Syndrome.
I quickly grabbed books searched the internet and reached out to families who are in my same shoes, and wow, was I was thankful for how many families there are. I was truly more educated by the moms and dads who also believed their child “can, and will”, succeed than by the medical providers who said “they can’t, and won’t”. Opportunities really are endless.
She CAN play ball ⚾
She WILL read Books or music 📚 🎼
She WILL shine like a star🌠
She CAN get a degree 🎓
She WILL be a beautiful lady 👗
She CAN learn to write 📝
She WILL be a teenager who loves the computer💻
She WILL play a very IMPORTANT role in your life 🎥
“Be the ones who say she CAN, Be the ones who say she WILL,
Be the ones who teach her to SHINE”
Jenn Premo a.k.a. Brooklyn’s MOM
As one might know being a mom is not always an “easy” job. It’s hard work doing the same thing day after day after day, weekends, weekdays, nights and early mornings. 24/7. Yes, that’s right 24/7. But it most often is the most rewarding job on the planet. It’s the most loving job I’ve ever had. The most at times stressful job I’ve ever had. The most button pushing, hair pulling, feed me now job I’ve ever had. The most cheek kissing (not ass kissing) blowing kisses, wet kisses, hugging job I’ve ever had.
It’s the most I’ve ever had to educate myself for a job. The most I’ve ever learned from a job in my 29 years of life. The biggest degree I’ve gained from a job. The most challenging struggle with myself, always making sure I’m doing my job correct.
But, get this. It’s not a JOB, it’s called being a MOTHER.
A “Job” you clock in/out for, you have breaks and vacations, get paid overtime for working extra hours, have a set schedule and either have a boss or people work under you.
So I am a MOTHER, and I do not have a job.
I am a mother who “WORKS” at home
I am a MOTHER who takes naps with her daughter
I am a MOTHER who gets to style her daughters hair.
I am a MOTHER who gets to make faces with my daughter
I am a MOTHER who is on an incredible team.
I am a MOTHER who has the best cheer leader.
I am a MOTHER who will show support everywhere I go, and show it WITH PRIDE.
I am a MOTHER who puts bows in both our hairs so we kinda match styles.
I am a MOTHER who loves to play dress up with the family.
I am a MOTHER who loves holiday get together and un knowingly matching. (good job guys)
I am a MOTHER who starts taking pictures first thing in the morning because I can not get enough of this girl. And because I never want to forget a moment.
I am a MOTHER who can sooth her child right after her first surgery
I am a MOTHER who carried you before you were born
I am a MOTHER who loves you more than the ocean combined with the 7 seas.
I am a MOTHER who has a wonderful life
Being a MOTHER means I can continuously wake up knowing that I have another day to teach my daughter the meaning of loving life. Teaching new achievements, words, actions, patterns, colors, animals, and all the new goals we create in a day.
Being a MOTHER means I am NEEDED. There is this little girl who depends on me more than I’ve ever known could be possible. She looks to me for comfort, food, reassurance, and most of all LOVE.
Sleeping on mommy for comfort
Being a MOTHER is my biggest achievement, it means I can continuously educate not only my daughter but myself. It means more to me than I ever imagined it would.
Thank you my daughter for picking ME to be your MOTHER.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
This is a very beautiful poem that we were given by a friend shortly after Brooklyn was born. At the time I agreed with the part about “the pain will never ever go away”, Because that pain is nothing you can prepare for and it HURTS, but, that is how I felt then.
Here I am 18 months down the road and I don’t know it any different, so I can imagine it any differently. I don’t mourn for that life I thought I wanted because in the end this is the life I always wanted, I just never knew it. I have many siblings and they all have kids so babies and children were nothing new to me. What was new to me is have a daughter with down syndrome. What was new to me was being a mommy and feeling this Giant need to protect this little girl that I have created, knowing I need to educate myself faster on down syndrome than I have ever educated myself on any other subject. That was all new to me. The first thing to come out of my mouth after being told my daughter has down syndrome was “well can I still hold her”. This is my daughter and no matter what God entrusted her life within my hands and I feel pretty honored for that. So Thank you God for sending me to Holland and not Italy with everyone else.
See Holland is Beautiful
Life has been busy busy with my little lady but I am finding time now to get on the computer and actually do some blogging, so I hope to keep you all update more as the days go on. I know in the next few days I’ll be posting a few different entries so be on the lookout.
My itty bity baby girl has grown so much, and come so far. And to think of all that we were told she wouldn’t and couldn’t be doing.
At 18 months she is my little firecracker. I can’t tell you how many times a day she makes me smile. How much attitude she already has, and how determined she is. She has been working hard on building her core strength and balance. Not yet walking but we know she works so hard to stay on her feet that we think it will be in the next few months, or any day. 🙂
The joy I have gained from being a stay at home mom is indescribable. It is the most rewarding and satisfying yet most DIFFICULT job I have ever had. I thank God each day for providing me with an amazing husband who supports me being at home with Brooklyn.
Though there are some days that are by far harder than others the good defiantly out weighs the bad. Brooklyn has therapy 3 classes every week plus one class we do every other week. Her strength’s right now are mostly in the fine motor area. her strong points are; Using her pointer finger, blowing kisses, playing ball taking turns, throwing overhand and working hard on feeding with a spoon.
My next post will be a recap of photos of her 18 months
Enjoy!
When Brooklyn was born it was the best moment in my life the most beautiful moment ever. I was finally seeing this life that had been growing inside me for the last 9 months. I was blessed with a beautiful little girl. I had to have an emergency C-Section after being in labor for 20 hours. Water broke at 6:30am but contractions never started so I was induced by about 1pm, around 10pm the baby started having heart problems and I was closely monitored for the next 3 hours before they decided it would be best to have a C-Section. An hour and half later my little Brooklyn was born.
In the recovery room they were doing the evaluations on her, and they told me that she was going to need to go to the NICU because her oxygen levels were low. They let me hold her in my arms for only a few minutes before they said they needed to get her to the NICU.
It was so hard to let her go, and it was even harder to see my baby girl get whisked away without me by her side. I knew she would be in good hands but it still hurt. I asked Kyle to stay with her until I could be there and keep me updated on what was going on. I was in the recovery room for 2 hours then I was moved to a post delivery room. Kyle had let me know she was doing good and they put her on oxygen and were watching her blood sugar levels. He had also mentioned to me that they thought she had some kind of Syndrome but didn’t say what kind and I didn’t think too much about it. I had asked my nurse if I could be with her and I was told I was not allowed to go untill I could walk after the surgery. So here I am in this room, while my daughter was in the NICU and I couldn’t be there to show her my love and encourage her to hang in there and be strong. It was the hardest 7 1/2 hours of my life.
When the nurses changed out I was asked by the new nurses about how she was doing, I said “I really didn’t know cause I was told that I could not be with her until I could walk.” The nurse looked at me so puzzled, and said “that is not correct, I will go and get you a wheel chair and take you to her right now.” At that moment I got so happy and excited cause I was finally going to be with my little girl.
As I am being wheeled out of the room my OBGYN was walking towards me. She asked how I was doing and wanted to know what I knew about the baby and her health. I told her I didn’t know too much about what was going on cause I am just now on my way to be with her. At that moment, she told me that the delivery Doctor had pre diagnosed her with Down Syndrome. I think my heart stopped for a moment and I instantly became numb, scared, worried, shocked and oh my gosh how did this happen. I had a great pregnancy, I did everything that I was supposed to and didn’t have any complications. Then I realized I had no idea what down syndrome was.
Kyle, his mom and myself were all in the room when my doctor started going over the notes. She let us know what it was that made them think she had down syndrome. Low muscle tone, a wider split between the first and second toe, the one line on the hand instead of two, the shorter pinky. At this point I really started to hurt inside but knew I needed to hold it together for her, MY DAUGHTER. All I wanted to do is cry but I didn’t, instead I just asked to hold my little girl and let her know I was going to be here for her, and everything will be okay.
I think I was in denial at first because they said “they thought, she might have it” So I was holding on to hope that it was going to be a wrong diagnosis. The doctor left and it was just the 4 of us in the room. Kyle, his mom, myself, and Brooklyn. I was still holding strong on the outside but hurting so so bad on the inside. I just could not cry in front of my girl cause she needed her mommy to be strong, and so I was. I also felt I could not cry in front of the Kyle or his mom cause I again felt I needed to be strong for all of us. I knew no matter what the outcome I was going to be here for her and give her the best care I possibly could. I just sat there with her in my arms feeling so sorry for everything, feeling selfish for wanting to have a child, feeling sad and feeling like why me, why did this have to happen to her. What in the world could I have done to deserve this and why does she have to get the short end of the stick for my actions, she is just a baby. We had planned for this baby it was not an accident, it was not an oh my I got drunk and this happened. It was two people who loved each other who sat down and talked about trying to have a child, two people who wanted more than anything to be parents. All of this is going on in my head and I am screamed to GOD, WHY.. WHY … WHY..
Kyle and his mom left shortly after the doctor did and went to eat, it was just me and Brooklyn. She had wires all over her and oxygen tubes taped down to her nose.
Even though I was hurting I still felt love for her and felt very protective of her immediately. I just looked at her while she slept and wondered about how life would be. Told her I would be here for her and that I will always be her mommy and love her to the end of the world and back over and over again. It was hard to be alone cause I had all these expectations of what birth would be like and it ended up being nothing like I had expected. Then to hear that my child had a disability to top it all. I was still trying to hold on to the thought that maybe the doctors were wrong, maybe, just maybe, they were wrong. Then it started all the different tests that she had to have done. I was so overwhelmed and feeling lost and alone. Kyle was still with his mom and I am sitting here feeling helpless as a mother cause didn’t know what was going on with my daughter. Blood draws after blood draws, ultrasounds, and heart scans. I’m thinking what is down syndrome and again why did it have to happen to my daughter.
I could not feel the happiness that I felt right after birth I only felt sad. All the test were done, Kyle and his mom came back and then shortly after that I went back to my room and left the baby in the NICU. Kyle’s mom had left and Kyle was getting ready to go home, take care of the cats, and get a little nap in before he had to go check into work so again I was going to be alone. Yet this time I was without my baby, again cause she was in the NICU and I was back in my room. Lets just say after everyone had left I cried and cried and cried and cried. Kyle had left the computer open to a page about down syndrome and that is when it all hit me. She really did have it and there was not a fix to it. I was looking at picture of people with down syndrome, then I looked at pictures of her and I could totally see it. It was not something that we could change either. Brooklyn has Down Syndrome and that is that. As I start to read more about down syndrome I come to this part about how it is called trisomy 21. 21,… I thought how strange, 21 is mine and Kyle’s number. We started dating on the 21st, he proposed to me on the 21st, we found out we were having a girl on the 21st and we are getting married on the 21st. At that moment I just knew everything was going to be okay, it is what it is and the sooner I got past the diagnosis the sooner my baby could have her mommy back.
Even though I still hurt so bad I knew in my heart we were all going to make the best of everything. I knew I was going to be her momma always and forever and get her the best care possible. My brother called and he was the first person in my family that I told. I was so upset still that I just cried on the phone and could hardly talk to him. He asked me what happened and I told him I don’t know and he asked me are you sure and I said yes I am sure. He said it was okay and just reassured me that we were all loved and that was the end of that conversation I just could not talk anymore.
That day was hard but we got through it. My brother had called my dad and told him about Brooklyn and sent him back to the hospital then we told him in person. It was so nice to see that my family was going to be there to love and care for my daughter no matter if she has down syndrome or not. I guess part of me thought they would love her less cause of her condition or even worse would not accept her as part of the family. I don’t know why I thought those things but I guess it’s part of the process of healing. First you think all the negative then you get over it and see ALL of the positive.
We were told that she would have all these problems and one by one she was beating the odds. They said she would not be able to breast feed, and the first time I put her to my breast she latched on. They said she was going to have intestine problems and the scan came back normal. They said she was going to most likely have to have heart surgery to close the valve, but her scan came back and they said it looked as if it would close on it’ own. And sure enough it did. They said she would not be leaving the NICU untill after I was released out of the hospital and she was released to me the day after she was born. Just in time for her first College football game to cheer on the Ducks.. Yay…
It was hard to get through those first days in the hospital, but we did and I am so thankful. Brooklyn is my light. I may not be on the same path I thought I would be on but I am still on a path with a healthy daughter and a loving man by my side. I am her mommy and she is my daughter. I still hurt and I still cry, not because I have a daughter with Down Syndrome, but because I think about her life and the challenges she will face. I hurt because I think about things like will she get picked on and called names or will she made fun of. This world is not nice. I cry because I think about her future, will she get to experience being in love, will she get to one day have a family of her own. I still cry because I hurt for her not me. But through all the sadness I am oh so very happy to have a beautiful daughter to love to cuddle to raise. She is the best part of me and I wouldn’t change it for the world.
Gods Little Blessing
{Down syndrome is a genetic condition that occurs in approximately one of every 800 live births. The chance of having a baby with DS is not affected by where you live, social class or race. Also, having a baby with DS does not mean you did anything wrong: nothing done before or during pregnancy causes DS. Recent advances in our understanding have resulted in dramatic improvements in the potential and life span of individuals with Down syndrome.}
A Life Created T21 