Tuesday, September 23, 2008

October is...National Down syndrome Awareness Month

And you can help me!

What can you do? Well, this is what I would like you to do...

I would like you to actually add a comment. Now, I am well aware that maybe NOBODY ever reads our blog, but I like to think at least there are a few.

What should I comment about?

I would like you to ask anything you want about Down syndrome.
What is it?
Is it contagious?
What causes it?
What is life like...
What has been...
Did you think...
I have wondered if...
Would you ever...
Does Nichole...
I feel like...

You get the idea.

Now, please, please, please know that there are no stupid questions or comments, because chances are, if you are thinking that, someone else might too. It is Down syndrome awareness month, so what a better time to ask or share something about these wonderful works of art (aka, people with Down syndrome)

If there is something posted that has already been asked that you were wondering too, or something that has already been shared. Please ask again, and share again, that way I have a better idea of what people are really thinking (and I will know who reads our blog hehehe.)

God has entrusted us with Nichole's life, and I want to share with everyone the blessing that she is. I am aware that there are many misconceptions out there (I use to have many of those) and I love being able to share with others the truths that we have discovered as we travel down this road.

Thanks for your comments, and keep 'em coming!

14 comments:

  1. Hello, I linked to your blog from our children's pastor's blog (Mel Mac) & read a lot of your posts because your baby girls are so cute! You are a great blogger! Now that Sarah Palin is the VP candidate, it seems like there is suddenly a lot of talk about Downs Syndrome in the media. One thing I was thinking about was how would she have time to be VP while still taking care of a special child? My hubby said her hubby would have to do it. As a stay at home mom myself, I could not imagine leaving my infant totally in the hands of my hubby, especially if there were medical issues too. What are the special needs of a cutie like Nichole or Sarah Palin's son? What do you think of her being VP? I am torn, b/c I think she is great, but I feel for her son...who will miss out on mommy time. By the way, hope this isn't too off track from what kind of questions you were asking for...I've just really had this on my mind and when I saw your post I thought you'd be the perfect person to ask :)

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  2. Oh...and btw...did I mention your girls are ADORABLE! God has truly blessed you :)

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  3. Hi Ellen. I read your blog! I have a 10 month old with developmental delay and hypotonia. We are still in the process of finding out why - trips to Mayo, testing, praying... So how do you deal with the comments from everyone? The advice giving that isn't appropriate, the comments, the judging, the attacks on parenting or what you feel is right? Or do you not get these?

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  4. Hi Ellen!
    You do such a wonderful job with this blog, I am very proud to be your friend! This has been such a special journey to be on with you and Andy and the girls. Our church family is very blessed from families such as you and the others with special situations that you are going through with God on the throne and guiding you. I do wonder something, will there be a point when the doctors can predict or identify if there is a level off point for Nichole and her abilities? I mean, are there different levels of down syndrome and are specialists able to determine that? Keep up the good work, and thanks for sending me a "homework" assignment!! love you guys!

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  5. Hello my friend. When you think of Nichole's future what do you see? That is my question for now. I'm so proud of all your pictures :) Great job!
    Love you lots!

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  6. Sharon3:05 PM

    Hi! I have a baby with Ds also and wanted to tell you what a beautiful family you have. My questions are: What has been your greatest joy in your journey with your daughter and T21 thus far? What is the relationship like between your two daughters? What is your older daughter's understanding of what T21 is? I could go on and on, but I'll stop here and maybe post again later. All my best to you and your family!!

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  7. hey ellen sorry i haven't stopped in a while. Nichole has gotten so big and beautiful. give her a birthday hug from her birthday buddy Eian.

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  8. Hi Ellen,

    I just found your blog and I LOVE it! It has been so special to see pictures of your girls and to read about your family. My dad was a Big Brother (from the Big Brothers Big Sisters program) for a boy with Autism - so I grew up knowing Chad and learning to love him becuse I saw how much my parents loved him.

    When I heard about Nichole and read on your Facebook page about how you are embracing this seeming "difficulty" as a blessing and a joy it made me cry and hope that someday I can be a mother like you. Thank you for your honesty and your transparency. You sharing your joys and fears is so special...it really is a priviledge.

    I guess my question would be - at what age will you explain to Ellie that Nichole is such a special little girl? Have you already begun to tell her, when will you do that?

    I think both of your girls are lucky to have such wonderful parents. Many many blessings on you. Tyler

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  9. Marnie8:50 AM

    Ellen, I just found your blog from your link on Facebook! I loved seeing the pictures of your girls! They are so beautiful and full of love and life.

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  10. Chelsea Schofield10:18 PM

    Hi Ellen,
    I read your blog! I check it frequently to catch up on the Stumbo happenings. I love being able to see how you are doing and watch your girls grow. It's been a blessing to read/watch your journey with Nichole. My question is: how do you face/deal with knowing that Nichole will face physical/medical challenges throughout her life? How do you prepare for the times at Mayo, testing, treatments, etc.?Watching Audrey have some of her tests done for her kidney was SO challenging for me & it's much less frequent for us. Side note, are you going to be at retreat in Oct? Drew and I will be missing this year! :(

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  11. Stumbos!
    It's been almost a year since your family has been a family of four! Happy Birthday Nichole! I've enjoyed hearing your heart and stories as you've encountered becoming an expert as a mom and dad with two kids, an OT, a PT, an advocate, an SLP, and a once a month cooking mom:) Nichole has so many great skills and it's because of God and your encouragement and diligence to have greatness for your child. What has been the biggest joy? What has been the most difficult time?

    We love you all. May you enjoy this day and celebrate your beautiful work of art!

    Love,
    Amy, Mike & Will

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  12. Mi queridisima Ellen! sigue escribiendo...te has vueto super experta! a pesar de la distancia siento como si platicaramos las cosas que te han pasado a través del blog.
    Antes que nada quiero felicitarte por la familia tan hermosa que has hecho junto con Andy, tus hijas estan preciooooosas me encanta ver sus fotos!
    Recuerdo cuando platicabamos sobre como sería cuando nos casaramos y fueramos mamás...quien sería la primera y demás...y tienes razón, muchas veces los sueños o planes que se tienen no se dan y las vida toma rumbos que no esperabas, la mayoria de las veces las cosas pasan de esa manera porque es lo mejor para ti, cuando volteas atras te das cuenta que no cambiarías lo vivido, aun cuando en el momento sientes que es muy dificil. Cuando recibí la noticia de Nicole senti mucha tristeza e impotencia del porque pasan estas cosas, pero conforme han pasado los meses me doy cuenta que de todas las personas que conozco, tu eres la que tiene más capacidad de sacar adelante a un bebé especial como Nicole.
    Mis preguntas son las siguientes, hay algo con lo que se pueda prevenir el sindrome de down? Como te has preparado para las diferentes etapas que tiene Nicole a diferencia de Ellie?
    Que problemas medicos puede llegar a enfrentar?
    Amiga te mando muchos abrazos a ti y a Andy y por supuesto besos a las nenas! cuidate mucho y espero que sigamos en contacto! :)

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  13. Karina Guerrero6:34 PM

    Hi Ellen, Andy, Ellie and Nichole. I love reading this blog!
    Ok, I have some questions already:
    1. Has already been discovered why can cause the nondisjunction of the chromosome 21?
    2. I knew maternal age influences the chances of conceiving a baby with Down syndrome, being the 35+ old mom's more susceptible to it. So, why there are some young moms, like you, that have DS child?
    3. Is it posible to conceive a "healthy" child after conceiving a DS child, or the probabilities of conceiving a second DS child increases?
    4. What's the average life expectancy for a DS Child?
    5. At which week in the uterus of the mother, the Trisomy 21 makes a difference in the development of the DS fetus, compared with a "healthy" fetus?

    Well, I'll be checking this blog ead day! Thanks for allowing us to know a much more about DS child...
    Huges and Kisses for all family!

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  14. Hi Ellen and the rest of the Stumbo family!
    Thanks for inviting me to your blog. It is very encouraging to read how God is so kindly working in your life to bring you closer to Himself. It's really encouraging, too, to hear about the hard times you've been through and how they've changed your heart. Your story has affirmed to me that God has His hand in everything that happens to us, and He gives us only the best! Your testimony is powerful.

    I am wondering... What has been the most helpful to you as you go through the daily routine of caring for Nicole? What keeps your spirit hopeful and gives you energy?

    A friend of mine runs a support group for mothers of Ds kids. If there are some things I can pass on to her to share, that would be great.

    Thanks!
    Maria (Cimenski) Miller

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