24 Weeks

24 weeks 1lb 7ozYesterday I had a quick visit to my MFM just to check Eli’s growth. This was at the very same office where the nurse was so rude to me, so I almost didn’t go to the appointment but now I am glad I did!
Normally, Eli is facing down with his face towards my spine so it’s been difficult to get a good look at him. But at some point he flipped and is now in the breech position and gave us the perfect view. The first thing Dr. R did was switch his machine to 4D and capture these images.
What a doll!! He is just perfect! I was so giddy with excitement that I barely paid attention to anything else.
Dr. R took all his measurements and concluded that Eli was perfect (tell me something I don’t know!). He is measuring right on target and weighs 1lb 7oz.

He commented that even knowing our diagnosis that he would never ever tell us that he suspected a thing. That based on his facial features and very good health- he would never have ordered an amnio or suggested Ds. Goes to show how much we just don’t know in this life! Technology is great but we are still human.
We are blessed to prepare ahead of time, but seeing his face simply made my whole week. I can’t wait to kiss that nose!

I don’t think I realized how sad I truly was until I saw his face. I started reading a book that the DSAH sent me in a care package. The book was written in 1995 and in general has a negative tone about it. It’s informative (even if outdated) but the overall negativity and politically correct slant on Down syndrome has been weighing heavy on my heart for a few days. Lists of medical problems, reviews of what Down syndrome is, pictures from the 90’s of babies with Ds…and the constant use of the phrase “mental retardation” is frankly discouraging. I’ve been putting myself to sleep with this book waiting for it to give me some kind of hope, inspiration or new information about my son.
And then I saw his face and a sadness I didn’t even know I had was instantly pushed away. He’s not just a grainy image on the screen with some obscure facial features. He’s not just a list of medical conditions and some outdated books definition of what Down syndrome means. That is Eli. That is is face- the child we created together- equally Barry and myself. That precious little face has somehow changed something inside of me. If other women only knew that they were giving up that all because of two scary words like Down syndrome…well…they sure are missing out.


18 Replies to “24 Weeks”

  1. This gave me goosebumps. Good goosebumps, of course. 🙂

    He is absolutely precious and I can’t wait to meet him!

    I really dislike when people call people with DS “mentally retarded” or “mentally handicapped”. It just sounds so condescending and negative. I hope that the book I bought you will make you feel better! I kind of want to read it myself but knowing my hormones, I’ll cry.

    Lots of love to you, girl. ❤

    1. I know!! I felt the same way!! So crazy!
      ugh, you are right, I hate that word so much and I didn’t realize how much I did until now. I’ve always hated the “r” word, but this just gets to me too!

  2. Sigh, yes. Well said, they are missing a lifetime of life and love.

    I have been praying for those parents and their children’s souls since I read those tough 92% termination after Down syndrome diagnosis statistics. It’s no fun path and also destroys families too.

    Lots of choices of books and free resources too–check with the local support center. In CA, there are two libraries of books at the special needs support centers where you can check out books for free. These centers might consider purchasing a book you suggest (can’t hurt to ask!!?). One center has DVDs & toys to borrow.

    I ran across an excellent short essay buy Martha Beck about Myths of DS in one of those old books (1998 I think). The new baby book is good too.

    What a sweet pic and a true miracle, that’s for sure considering he’s so healthy like my son with DS and lots of others too. What a sweet blessing!

    Try the DSRTF and plus 15 Facebook pages, they often post videos of conferences.

    Or your local library.

    1. Thank you! I’ve been thinking about the library so I’m sure I will wind up there at some point. 🙂

      So your son didn’t have any health issues either? That’s awesome! Do you have any pictures of him?

  3. I saw these photos last night on FB but didn’t have time to do anything but click like. I wanted to say that that beautiful little boy in these photos has a future in movies because he’s so pretty! Also, I keep meaning to call you, but things have been so crazy after the hubby’s back surgery that I haven’t had a chance to yet. I wanted to tell you how much I appreciate you and Barry! You guys have so much going on and Barry still took the time to call Jason and extend his well wishes and prayers for a speedy recovery, and that gesture touched my heart. We are so blessed to have such wonderful friends like the two of you in our lives.

  4. Oh, he is adorable! Those pictures are amazing.

    There are tons of great books out there. I highly recommend “Gifts.” It’s a collection of stories from moms, and gives a better view of the variety of experiences that people have with their babies with DS.

    ❤ Megan

  5. Aww look at his little face! It makes it so much more real once you can see him … and even moreso hold him. That he’s this little tiny human being first and foremost and that the diagnosis is second. He isn’t his diagnosis. He is just Eli. The Ds won’t define him. I loved seeing the 3D images when I was pg with my daughter … a little sneak peek in to her world.

    I have a vision that one day delivery rooms are going to sound like this, “It’s a girl! Head full of dark black hair, 46 chromosomes … congratulations!” and “It’s a boy! fuzzy peach hair and 47 chromosomes … congratulations!” Where it won’t matter how many chromosomes your baby has because it’ll just be ‘typical’ to have 46 or 47 chromosomes. And you’ll just be congratulated on giving birth.

    PS – was the book Babies with Down Syndrome A New Parent’s Guide?

      1. That was the first book we were given, but I don’t remember what version/year I had. I think there are have been 2 updates to that book since I read it, so I’m not familiar with what is in it now. I just remember it being pretty depressing to read! One parent account has stuck with me all these years – the mom said they hadn’t told family yet and when her brother showed up one day she hid in the closet with the baby while her husband talked to him! I thought how absolutely sad is that?! Anyway, I’m glad you have found other, more positive, resources 🙂

      2. Oh gosh! I haven’t read that one- but besides the totally negative and depressing tone the book seems to carry, the parent comments at the end of each chapter are equally unhelpful. Gifts is a much better choice to read, but still…I think the Ds community is in need of a new book and soon!

  6. Beautiful pictures…. what a wonderful blessings. Glad to know that he is doing so well! Blessings your way!

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