Friday, February 3, 2012

I did not Birth a Syndrome

As Spencer was born, placed on my belly, and then taken across the room to be checked over, my husband and I were both watching and checking for obvious Down syndrome markers. We knew there would be some and we were fine with that. We just hoped they wouldn't be overly obvious. I discussed the possible physical characteristics in my first Down Syndrome Awareness Month post.

When they took him across the room, Elmo quietly told me he hadn't noticed any traits. I had. I noticed that he has the flatter nose bridge. I also noticed his eyes have a slight upward slant, often referred to as "almond eyes." And I also noticed loose folds of skin on the back of his neck.


Most of all though, I know we saw our son. I thought it was super sweet that my husband had overlooked these things. He hadn't seen them at all! And let me tell you, he generally has a keen eye for these kinds of details!

Since then (3 weeks ago), we've had time to get to know our son better. One of my main concerns was low muscle tone*. It is very common among babies with Down syndrome and can make breastfeeding very difficult (if even possible). I mentioned during pregnancy that Spencer certainly didn't feel like he had low muscle tone! But really, how can you determine something like that while in utero? Well I was right! We aced the muscle tone! Spencer latched on within 30 minutes of birth!


By comparing him to the list I posted before: He does have the flatter nose bridge*. He has ever-so-slight epicanthal folds at the corners of his eyes. He does have a tiny mouth. In the NICU, if he puckered up, I couldn't stuff my nipple into his mouth. I think he has small ears* and small ear passages, but it has been a couple of years since I had a newborn. Maybe they just seem small.

Spencer's head is a little on the small side and he has loose folds of extra skin on the back of his neck. I can't decide if he has shorter fingers (especially the 5th finger) or not. It is hard to tell with such tiny little hands in the first place.

Sasha & Spencer's FeetSasha & Spencer's Feet

He definitely has a gap between his first and second toes* and a deep crease in the sole of his foot in this gap. The funny thing about this... I've always called my babies "Monkey Toes." This stems from them all having my long slender toes and because I just love baby feet and toes! Spencer doesn't have long slender toes, but he does have this gap. It is more reminiscent of monkey's toes than my other babies! I absolutely adore his special little feet! I can't tell if they're flat or not.

This leaves plenty of possible features in the "grab bag" that Spencer didn't get. We had seen him stick his tongue out on our U/S a couple of times, so I was surprised that he doesn't stick his tongue out more. He did have some tongue thrusting issues, but the Speech Therapist worked with him on some bottle feeds and this doesn't seem to be an issue at all anymore.

I had some family members that came up to the hospital right before the NICU opened back up (from one of their 4 daily closures). They had a new baby arrive, though, so were slow to open or answer their calls. While we waited so they could see Spencer, I was asked "Do they still think he is retarded?" I don't know why I was so shocked. This particular branch of family has expressed absolutely no interest in learning about Down syndrome.

They gave up and left without seeing Spencer at all. The NICU opened back up within minutes of their leaving. I wasn't sorry they didn't get to see him, not at all. It does kind of weigh on me, though, that these family members (we're not talking extended here) still haven't seen our 3 week old son. And yet I hesitate to take him to see them, either.

I'm not offended by the R-word. At the same time, I am very offended that these family members haven't tried to learn anything and also that they assume Spencer is retarded. That word does not apply. Seriously, it just doesn't.


I think we were afraid of birthing a syndrome instead of a baby. I think we're offended that others might see Spencer in that way. Now that he is here with us, we certainly don't see him as a syndrome at all. Sure, every once in a while I catch him from a certain angle and his common DS features align and I see them. I do. But more than anything, I see and love our perfect little boy. I hope my family can get over their hangups and see him for who he is, too.

We did not birth a syndrome. We birthed a perfect little baby boy!



* These are the most common physical traits associated with Down syndrome.

37 comments:

  1. What a beautiful post, Jorje! Your gorgeous boy is so lucky to have you and Elmo for parents. (And I adore S's feet too!)

    ReplyDelete
  2. He is beautiful, and so are you. You are Such a blessing as his mum - you are perfect for himj and he will be a great blessing to you. I applaud you - be blessed all of you.

    ReplyDelete
    Replies
    1. I don't think I could say it any better than Angela :) And Jorje, he is absolutely beautiful! I cannot wait to meet him!!

      Delete
  3. Perfect post, really. I'm loving the photos and all of the love that shows through your every word. I'm smiling just from reading (and its early for me to be awake... much less smiling!)

    ReplyDelete
    Replies
    1. Thank you, Byn. I read this again today (hadn't looked at it since I wrote it two weeks ago) and it melts my heart to even re-read it. :-)

      Delete
  4. What a gorgeous post. I'm here from WaldenMommy today, and I'm so glad I clicked over. Spencer's beautiful, and he's your child. We're more than the differences and labels that we often let define us. Thank you for this.

    ReplyDelete
  5. This is a beautiful post. Spencer is so cute. He has beautiful eyes! Love the feet pic!

    ReplyDelete
    Replies
    1. Thank you!

      If they stay blue, then he got his daddy's eyes. :-)

      Delete
  6. Dear Mama Jorje!
    Spence is BEAUTIFUL - as are your girls. I feel sad for your family that they are missing out on so much. You are an amazing mama and you give strength to so many. Thank you for your post today!

    ReplyDelete
    Replies
    1. Thank you. :-)

      They have since met Spencer and I hope they will come to see past the DS. I don't expect to discuss it, though.

      Delete
  7. He is beautiful!! How callous and awful that your family members said that about him. I can only hope they were asking out of concern and they just worded it ignorantly...

    One of my fave blogs is written by the dad of a little boy with Down Syndrome, if you want to check it out: http://noahsdad.com/

    I think it's wonderful that you have this attitude. I know it's not the same but I have Asperger's and my mother never let that define me. It gave me a lot of confidence growing up that I was special, and not in a bad way.

    ReplyDelete
    Replies
    1. I got the impression it was... kind out of concern, but that the concern was over the wrong things. I've had several people suggest Noah's Dad to me. :)

      I knew a boy (the same age as my oldest daughter) with Asperger's. There was definitely a lot more to him than that! No single thing defines any person. Its a shame when people see the world in that way.

      Delete
  8. Beautiful. Just like your son.

    ReplyDelete
  9. He certainly is beautiful and perfect. What a sweetie, and wasn't he born into the most wonderful family, who love him for exactly who he is? Lotsa love... xxxooo

    ReplyDelete
  10. Precious, perfect baby. You're awesome, mama.

    ReplyDelete
  11. Jorge, he is adorable! Love this post, and I love those baby toes. Your family is missing out. It's sad they don't want to get to know Spencer, or learn more about down syndrome. You and your immediate family enjoy that precious baby and all the goodness he's going to bring into your life.

    ReplyDelete
  12. I love the photos, especially the one of his eyes. He is beautiful.

    ReplyDelete
  13. Your family's response actually shocked me. Like, did they think they were going to give him a jab and everything would be okay?? *tut* You're an amazing Mama, Jorje, and this is an amazing expression of love.

    ReplyDelete
  14. Jorje, you have completely altered my perception of the idea of having child with DS. I don't know of any non-messed up way to say this, but it was always a sneaking sort of thought at the back of my mind - "How could I handle it?"

    From having the privilege of hearing your journey, I've realized how wrong that was...truly I'm sorry for ever having felt that way.

    Spencer is so incredibly beautiful and I'm so very happy to know of him and you and the rest of your family - all of you are an incredible blessing. Thank you so much for all that you've shared. :)

    ReplyDelete
    Replies
    1. Thank you Kelly. Certainly no offense taken here! Its one of those things in life... you don't know how you'll handle something until its in your lap. And so far, at least for us, it hasn't been the huge, scary thing that it seems to those that haven't already experienced it. We may still have more scary stuff ahead, but so far it hasn't been horribly huge... if that makes sense. (We haven't had a lot of scary medical issues.)

      Delete
  15. I love this post, Jorje! Spencer is so adorable! When I went to the DS walk locally, all I could see was the joy that all the children brought to their families, the same kind of joy that my son has brought to me. Congratulations again :)

    ReplyDelete
  16. Your wonderful son is absolutely gorgeous-and what a wise look he has in his eyes!! He's perfect and I cant tell you how uplifting your blog has been- congratulations to you and your lovely family (I hope the less enlightened mambers of your extended family manage to see the wonder and joy your boy brings you), may you all spend years full of laughter and love together. XX

    ReplyDelete
  17. What a beautiful baby! I have a daughter with Down Syndrome, and we adopted her when she was 11 months old. The first picture I have of her was taken when she was about 4.5 months old, and I often wonder what she looked like as a little baby. She is beautiful now, and I am sure she always has been beautiful, and I think she might have looked a little bit like your sweet baby. I hope your family will come to understand what a wonderful treasure this child is, and that they will learn that quickly. God bless you.

    ReplyDelete
  18. This post gave me goosebumps and made my eyes well up with tears. I'm so sorry that you have family members who are so insensitive. I wonder if a lot of it has to do with fear. Their fear that they won't know what to do, what to say. People are so fearful of anything remotely "different."

    But your baby was made for you. That's why he has monkey toes. And you are such the perfect person to show the world that different is not scary. At all. Embrace this as you embrace sweet Spencer!!! And Congratulations again!!

    ReplyDelete
  19. I linked this post on mothers of change's Sunday Surf this week. =) www.mothersofchange.com

    ReplyDelete
  20. What a beautiful post! I was just talking to my sister, who is expecting her first. We were talking about doing the early screens for genetic disorders, but we both said that even if something did pop up, we would not terminate a pregnancy over it. You love your baby because he's YOURS!
    And he is totally sweet. congratulations!

    ReplyDelete
  21. Oh my what a sweet little baby!! He looks delicious! Blessings to all of you.

    ReplyDelete
  22. Beautiful post for a beautiful babe. I will never understand how the world, even our own families, can be so cruel, but this baby boy will know true love from you and that is what counts right now!

    ReplyDelete
  23. What an absolutely beautiful post. Your children are all very lucky to have a Momma who only sees the gift; they will all grow to be compassionate, loving souls as a result of your love.

    ReplyDelete
  24. More and more you will see him just as a little baby boy. Id id not realize he was so young! How is his feeding going? It took Nichole a very long time to nurse, I was really excited when I returned that medela pump and she was eating!

    So how do you feel about the R-word now? Since you know it does not describe your son at all? I don't like it, not one little bit!

    And what a beautiful post you wrote about your son when he was only 3 weeks old! At that time I was just beginning to be okay with the diagnosis. I know you stopped by my blog, but if you wanted to read (a lot!) I wrote a series of 24 posts on my blog during Down syndrome awareness month where I shared about how it was like for me to have a baby with down syndrome. The first one is "Road Marker 321"

    ReplyDelete
  25. I just stumbled over your blog. My son does not have down syndrome, but a extrememly rare chromosome anomoly. So rare that there is no information about it out there. Many things are similar to DS though - low muscle tone, eyes, nose, gap between toes.
    When we found out, I didn't want to tell people - Some people (family) thought I was ashamed, and I wasn't in the least, but I wanted people to see HIM, not his syndrome. 6 months in, I've come to terms with it and can talk openly, but I still hope daily that people see HIM for how very wonderful he is and do not place him in a "special needs" box (like alot of my extended family seems to).

    ReplyDelete
    Replies
    1. I still find myself not quite sure when to identify him (to people) as having DS, but that quiet need to do so is fading.

      Delete

Who doesn't love comments? Please let me know you stopped by and share your thoughts on the topic at hand.

Related Posts Plugin for WordPress, Blogger...