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Comments

  1. Carolyn210 says:

    I follow you and Noah on FB and now I have your blog and videos! I feel so lucky to find you. I have no family w/ Down’s Syndrome, but I feel incredibly close to your family. Thank you for sharing Noah. He is God’s Angel and he softens my old, hard heart.

  2. Sonya Vasquez says:

    I have to say Thank you for your website, I too have a baby with DS. He is 13 month’s old and there does not go a day without him doing something that amazes us.He is awesome just like Noah. I have been glued to your site all day long. Aside from the adorable pictures, videos and milestone alerts I especially love all the informative information you post. I have shared your site with 5 of the moms(and dads) who live here in Del Rio, Texas. We are in the process of getting our own “chapter” here and appreciate the information you post to help us and give us idea’s to help our little one’s with DS . Continue the good job and may God Bless you and your family as he has blessed us. :0)

  3. Thank you for the web site .. I have a son who is 18 months old with DS, he is the joy of my life … I cry joyful tears daily at the milestones he succeeds at … Noah Donald and I thank you for your sharing yourself and your Noah with the world

  4. Dear Noah & Noah’s Dad,

    So I just got a tip from someone to start following your website. 3 weeks ago I became an aunt for the first time! Our first baby was born in the family, my big brother was now a father and my parents grandparents :) When my brother called to tell me he became a father I could tell something was wrong. He did not sound happy and excited, but really sad. Lara my niece has Down Syndrome…. Which of course was a shock to all of us. I think that we were mostly worried about my brother and his girlfriend. It is there first child and they do not know what to expect, will she be healthy, how will she develop, what will the future hold… Questions which will be answered over the coming years.
    Another thing that I personally experienced is that for some reason I found it difficult to tell colleagues and friends that I became an aunt… Which is weird because I was very excited (still am) but for some reason I did not feel like sharing this with other people… But I did tell people I became an aunt and I told it with pride, because under any other circumstances I would be proud and excited so why should this change? And other thing I noticed is that other people (colleagues/friends) are less excited, they do not ask how the baby is doing, they do not say “oh what a cute baby” when I show pictures… This is what makes me sad, and I feel it is my responsibility to let people know I am proud of my little niece and that she is the cutest thing ever!!!

    I will send your website to my brother and his girl friend and hope it will help them on their journey of raising their daughter,

    Kind regards,

    Lieke

    • Hi Lieke,

      I understand exactly where you are coming from! Been there and done that! I have a beautiful grand child who is now 8 months of age. I felt the same as you – my reason was that it was a private thing for me! I was not ready to share with everyone. I am quiet in nature…quiet not shy! And, I chose to keep it to myself for a bit as I was coming to terms with a few things! After giving my daughter a baby shower – I decided to chronicle everything and write a booklet on my feelings. I did just so and it felt good. You are and will be just fine.

      I learn so much from Noah Dad site! I think he is awesome and his family is such a source of encouragement!

      Just hang in there you will be just fine. Some people are so nervous not to say the wrong thing, they may chose not to say anything at all. For me, I can see the parents in children’s photos or I can see the differences…Some see all DS children as the same…and that is how I know I got it! I am sure your little niece is gorgeous…we can share photos if you like!

      Isn’t Noah a fine your guy!!! He is gorgeous and you should see my little Cha…fine little guy!

      regards,
      Tia
      ChaChas Ama

  5. I stumbled on your website because I was looking for swing set tips (oddly enough) and ended up reading this lovely tribute to your beautiful kids. After reading several of your posts I am absolutely SHOCKED and HORRIFIED (and almost brought to tears) that there are those that would encourage you to abort a child because they may be “burdensome” due to disabilities. What happened to being selfless and making sacrifices for your children? I do not have any family members with any disabilities, but I have friends who do and say that having a family member with a disability enriched their lives in ways they could have never known!! You are so wonderful to share your beautiful family in such a way! Thank you!

  6. Christine says:

    Thank you for sharing this article about the “R” word. I have never been a big user of it, however, I am more aware of how much others use it. I am not offended by people using it as I agree with you I don’t think they are being hateful. Just last night someone I play volleyball with (whom of which does not know I have a child with DS) used the word comically describing her daughter. After the conversation I approached her in private and let her know that I have a child with DS but that I was not offended. She was startled at first but listened to me explain. Retarded means “slow or limited in intellectual or emotional development or academic progress”. This does describe my Gabriel but I do not look at it as negative. He is such a blessing and I LOVE to watch the progress , even if slow, that he makes. He has taught me to appreciate every milestone. Gabe is my 4th child out of 5 and I have never before appreciated the progress and learning each and every child makes like I do Gabe. He slows ME down and teaches me to appreciate EVERYTHING! I look forward to all his accomplishments because all of them are tremendous. I have thought about the future and it breaks my heart to think how this cruel world may treat him. I think every parents with a special needs child does but In your opinion should we be educating people or just demanding that this word not be used. I love reading your posts on FB and you have showed me a lot of things I didn’t know (and believe me I LOVE to research things)! I would greatly value your opinion on this subject.

  7. First off, thank you so much for posting this. I can speak from experience, I know that all too often, those in the medical field will jump immediately to terminating a pregnancy if there’s something ‘wrong’ with your child.
    I had genetic screening done with the second daughter I am currently pregnant with. As my first one was stillborn at 27 weeks had DS, I thought it’d be best to have the extra ultrasound done to make sure there wasn’t anything wrong with her heart that would require any surgery or might possibly put her life at risk. However, this is not how the doctors viewed this screening. My daughter showed that she has a marker indicating that she could have Downs. Immediately, the doctor begins pushing myself and my husband to have this verified through an amniocentesis and kept telling us that we HAD to get this test before 20 weeks. After some probing, they finally answered my husband’s question about why this deadline was so specific…. 20 weeks is when ‘the fetus’ is considered a human being and it’s illegal to terminate the pregnancy. I don’t care what your stance is: Pro Choice or Pro LIfe, you cannot sit there and tell a couple who have lost a child and had just finished watching their second one dance on screen for an hour that she has less of a right to live because, in their words, “It would be cruel to allow a child like that to be born because you felt too guilty”. Needless to say, we haven’t been back.
    Frankly, I would rather have both of my babies, extra chromosomes and all, rather than knowing that my baby will never know her big sister. She would’ve been two years old had she lived and still, not a day goes by that I don’t think about her or the cruel things people have said (unintentionally, I’m sure) once they found out she had Downs. “It was probably for the best” or “You didn’t REALLY want to raise a child with Downs”. Do not disregard my child’s death because you are too ignorant to see her for who she was: a little girl who never got the chance to prove you wrong.

  8. Maria Mari says:

    Hola, soy la muy FELIZ madre de un nino con la condición de síndrome down. en la prueba que hacen durante el embarazo mi hijo no salio con la condición.

    Al contrario conocí a una madre que la prueba durante el embarazo decía que venia con síndrome down y no fue así, imagina si la hubiera abortado.

    cuando nacio mi hijo ademas de estar pasando por una situacion personal muy dificil, llegaron 2 medicos a mi cuarto luego de haber dado a luz y con caras tristes me informaron que mi hijo tenia ciertos rasgos de sindrome down, y que si yo estaba de acuerdo en que le hicieran las pruebas para estar seguros. les dije que si. cuando se fueron del cuarto el cual compartia con otra cama una muchacha y su madre que habia dado a luz, hubo un silencio absoluto en la habitacion, yo estaba sola, luego llego mi madre y una sobrina y les dije muy triste lo que me habian dicho.

    siendo una profesional busque en mi mente que sabia yo de sindrome down? y no me llegaba nada a mi mente, fue como un archivo bloqueado del cual yo no sabia nada. cai en un limbo o en un hoyo profundo y quede colgando sin saber que pensar ni que decir. mi madre se puso triste tambien.

    no me trajeron el bebe al cuarto como yo habia pedido y fui a darle el pecho sin instrucciones ni nadie que me dijera nada sobre la forma de ser de mi bebe, demas esta decir que era el bebe mas hermoso de todos los nacidos ese dia, las personas lo veian a traves del cristal y decian que era el mas hermoso de todos. pero no habia felcidad, no habia fiesta, solo un sentimiento de cuanto lo siento.

    a diferencia de cuando tuve mi hijo mayor que todo el mundo reia, felicitaba,

    cuando fui a darle el pecho mi hijo era bien tranquilo, casi no abria los ojitos y tenia un ojo mas cerrado que el otro, no quiso tomar lehe de mi pecho, se pasaba durmiendo. tenia todas esas dudas y muchas mas pero nadie me oriento.

    cuando lleve mi hijo a casa me llamaron de una fundacion de sindrome down me dijeron y enviaron informaciones, me invitaron a ir pero me quedaba muy lejos y nunca fui. lei todo lo que pude, y lo comenze con las ayudas que me ofrecieron de las clinicas, evaluaciones, terapias poco a poco desde que nacio, todo lo que he averiguado lo consigo para mi hijo.

    creo que he sido muy afortunada por encaminar a mi hijo hacia una vida independiente y normal. academicamente esta por grado y lucho por que sea tratado con respeto y los derechos que tiene y nadie se los puede quitar. estoy dispuesta a llegar a todos los foros pertinentes por que mi hijo tenga una vida digna como lo he hecho con mi hijo mayor.

    demas esta decir que Fernando trajo a nuestras vidas un amor de proporciones incalculables. mi hijo mayor y yo agradecemos a Dios a cada momento por habernos dado el placer y el honor de tenerlo con nosotros, es quien me anima cuando decaigo, quien me da fuerzas cuando las pierdo, es el que me refuerza la paz y la esperanza, es quien me ayuda a luchar aunque este cansada. la familia, mi mama, lo aman mas alla de lo explicable. cuando mi mama esta con Fernando ella olvida los achaques, ella es Feliz.

    Gracias a Dios Fernando nacio con buena salud y hemos conseguido ayudas academicas y de terapias para el. es una gran lucha y esfuerzo en que a veces nos olvidamos de nosotros mismos, pero el resultado vale la pena.

    Espero en Dios ver a Fernando terminar sus estudios, lograr un trabajo digno, y tener una familia que lo ame. asi quisiera que en la medida de cada nino con sindrome down , que para mi no son angeles como hay gente que les dice, para mi son ninos, adolescentes, personas, que logren las metas que su capacidad les permita y la sociedad y familia les ayuden a lograrlo. quisiera ayudar con mas a otros que necesiten orientacion, ayuda, comprension en este mundo de nuestros hijos.

  9. megan starr says:

    I think your open letter is great advice. I was 17 when my daughter was born. She had a AVSD and was in congestive heart failure before birth. Luckily she was a c-section because she was breach or she would not have survived delivery but on to the true reason for my comment. The doctor told my ex that “your daughter is a mongoloid” and walked away. Later he advised we should “institutionalize her and forget we ever had her and go on with our lives”. Not only was she down syndrome but her heart was so weak he told us she wasn’t going to live through the night and I shouldn’t see her because it would just make it harder on me when she died if we had started to bond. Luckily a nurse didn’t agree with him and took me to meet my girl at 4 am, she was born at 11:07 pm. My girl is now 24 yrs old, October 31 will be 24 yrs. since her open heart surgery. She is my only daughter and cracks us up on a daily basis. For the record my doctor was NOT who delivered her, he had taken a four day weekend for the first time in 4 years and was due back in the office the next day. His brother was down syndrome and 50 yrs old at the time and Dr. Devine was not a happy camper with the one who filled in for him and he filed a complaint with the hospital board about the doctor who told us to forget my princess. Life is not always easy but it’s been a heck of a ride so far and she always keeps us guessing and laughing.

  10. I love, love, love your open letter to an ob/gyn post! I live in a smaller community a couple of hours outside of Houston. There are many less resources and our doctors here tend to be even farther behind times. In fact there were so few resources when my son was born that I started my own Down syndrome support group. We now have our own Buddy Walk and many involved families. One of the campaigns we began delivers welcome baskets to new babies born/or unborn with Down syndrome. I have offered to meet families many times but have never been asked to by a doctor. I would love to include your open letter when I make my visits to the local offices!

  11. Renee Arnold says:

    Thanks for sharing your story and life ,I also have a “Noah” he is 13 now .It seems just like yesterday that I was being told that my son has Downs.I thought my world was crashing ,now I see just what a gift from God he really is . He is a happy child and has no idea that others view him as “different” I view him as I do any child ,,,,unique .Thanks for going the extra mile –Renee

  12. I am worry for my son

  13. Marlen Ramirez says:

    Hola. Tengo una hija con SD Ayer cumplio 12 años. Cuando nacio y me dieron la noticia fue terrible. Crei q el mundo se desplomaba. Sin embargo; cuando la tuve entre mis brazos todo mis temores
    desaparecieron. Lena se convirtio en el centro de mi vida.

  14. ROSILENE DA SILVA says:

    BOA TARDE PARA TODOS ..EU SOU A PRIMA DO EDGAR ELE TEM SINDROME DOWN; NO SABADO DIA 25 DE JANEIRO ELE FAZ 2 ANO.EU FUI A BABA DELE ESTE QUANDO ELE TINHA 3 MESES FIQUEI ATE QUANDO ELE TINHA 1 ANO E 9 MESES .EU SO NÃO ESTOU CUIDANDO QUE A MÃE DELE ELISA NÃO ESTA MAIS TRABALHANDO.ELA QUE FICA COM ELE ;MAS SEMPRE ESTOU NA CASA DELE ;EU GOSTEI DOS COMENTARIO .PASSEI COISAS BOA PARA O EDGAR E APRENDI MUITAS COISAS BOA COM ELE.SE EU FOR FALAR DELE OU DE OUTRAS CRIANÇAS IA DA UM LIVRO DE TANTAS PALAVRAS BONITAS.EU NAO TENHO FILHO AMO O EDGAR COMO SE FOSSE MEU.EU CHAMO ELE DE MEU AMORZINHO …E BOM VCS ESCREVER EM PORTUGUES PORQUE EU SOU BRASILEIRA E NAO ESCREVE EM INGLES .EU SEMPRE VOU PARA TRADUÇÃO .O NOAHS E UM FOFINHO ,EU ADORO OS VIDEOS E COMENTO DELE PARA AS PESSOAS,EU FIQUEI MUITO CONTENTE DE TER VOCEIS COMO AMIGOS .DE TAO LONGE PORQUE VOCEIS MORAM NOS ESTADOS UNIDOS..ABRAÇOS PARA TODOS E MIL BEIJOS PARA NOÉ..

  15. Georgeanna says:

    my Nephew is 12 years old and we were told not to expect him to make it to his first birthday. He was born with many of the side effects of having Down syndrome. But God is Good!! We lost his mother 10 years ago and get to watch him grown and learn in her place every day!

  16. Georgeanna says:

    my Nephew is 12 years old and we were told not to expect him to make it to his first birthday. He was born with many of the side effects of having Downs . But God is Good!! We lost his mother 10 years ago and get to watch him grown and learn in her place every day!

  17. I am so new here! We were expecting our DS grandchild for over 7 months, and he was born 12/31/13. I am so grateful to have found this encouraging network of people who are caring with wonderful expressions of hearfelt words. This is a beautiful thing and just wanted to say hello and appreciate your efforts.

  18. Bernadette Esplin says:

    Thankyou for sharing your posts with us. I have a three year old daughter with DS and I really relate with your your story. My husband and I did not get the testing when I was pregnant with Laura as we new that it would not make a difference for us, so when she was born we were shocked to say the least, she was whisked away from us and it seemed like hours before any news came of her although in my heart I knew that she was DS. Those first 24 hours were hard, I was in shock and did not want to see my baby, she was in special care and required oxygen and all sorts of tests were being performed on her. On the second night I prayed I said Lord I know that you love this child, and I am sorry but I am not feeling the Love please Lord give me your love her. My prayer was answered immediately the Lord directed me to Psalm 139:14 ” I praise you because I am fearfully and wonderfully made” something shifted in my spirit that night and I was filled with a mother’s love for her baby. Since then Laura has taken my family on a beautiful journey , I have 4 other children ranging form 23 to 3 (laura our baby) and we all adore her, she is smart, funny, loving, quirky and just a true blessing to our family. We embrace her uniqueness, as we are all created unique and we wouldn’t have her any other way Down Syndrome is part of who she is .

  19. Patience Mifetu says:

    My Keziah also is down. But she has a heart condition that makes her not to breastfeed well. She is always losing weight. She is five months but weighs 3 kilograms. I don’t know what to do. I love her so much and wouldn’t want to lose her.

  20. a teacher says:

    When I was a pre-teen I met a little cousin for the first time. He was blond, blue-eyed, always grinning and into mischief, and I was fascinated with him. I felt the definite impression, “This will be your life’s work.” As a kid, I very literally assumed that this meant I would work with kids with Down syndrome. It has turned out that as a special ed teacher who has always loved working with kids, period, I have been privileged to work with kids with all kinds of conditions. I also work with a special needs Boy Scout troop. Many of my Scouts are also very active in Special O and a few of them have world records in their own events! They have traveled to parts of the world that I will never see. They are strong, positive, talented, interactive, social, loving, fun people! If this is not a family position or a career field for you, there are wonderful opportunities in volunteerism and community service. Forget “the r-word” and open your heart!

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