Living in a Bubble

21 weeks and 3 days! I can hardly believe it! I don’t know how I can get any bigger!! Little man is making tons of room but only occupying the space in my pelvis! Turd…lol

Speaking of our little man, we decided on his name!

Eli Walker

It feels good to have a name for him. I’ve been “test-driving” it for a little less than a week and it just feels right. So there it is!!

Also, I’m testing out a new look for our blog. I don’t want it to look cookie-cutter but I have no idea how to really make the blog more unique. I think once Eli is here, I will have fun pictures to use that will make decorating it easier. For now, I like it.

Down to business. Needing to sort through these feelings.
The last few days I have been at home, safe in my bubble. We had friends over and we just laughed and laughed all night! I needed it! Then its been beautiful weather and bright sunny days, tickle fights with my husband, lounging in bed and talking to our son, snuggles from our dogs, shopping for cloth diapers, and reading Ds blogs/books. I’ve been safe and happy in my bubble.
And then I stepped out into the real world to spend time with my family.

The love is there. Clearly and truly. Our family loves him already. But love for this child isn’t knowledge and education about him and I feel as if some family members are either ignoring the diagnosis or scared of what it actually means. And who could blame them? I didn’t know a thing about Ds until I had to know! What I do know? That Eli, like any other child, can’t be placed in a box with limitations. No one can define what he is capable of or say what he will be like. He isn’t retarded. He isn’t “special”. His extra chromosome cannot be ignored or wished away. He’s just Eli! He’s just our child! He will have struggles like any other. Some things will come naturally, while others will take time.

Our son is perfect. I see him on the screen wiggling around, his perfect little nose, his tiny perfect hands waving at us, feel his perfect little punches. He is perfect exactly the way he is.
Sure, we could ignore the FISH results. We could pray and hope every day for the son we had envisioned. But that would be foolish because we would be that much less prepared when he got here.
Its been 10 days since we were given the official diagnosis. 3 tests all confirming Down syndrome.
I would say that considering the situation, I have not only handled it in a healthy way, but that I have worked to become as educated as possible.
And in a sense I feel lucky. Our story isn’t unique. Many women decline testing because their baby looks as perfect as ours does, only to be surprised at birth with a Ds diagnosis! We would have the same situation if the lab had not made a mistake.
So, yeah, we are doing pretty darn good, thankyouverymuch!
Its not an obsession. I’m not over-researching (unless reaching out to others and reading real life birthing stories is over the top…). I’m not throwing a pity-party. I don’t expect everyone to embrace the situation. But I am realistic. And it would be foolish to be unprepared for our son when he gets here. It would be foolish for our family to be uneducated when he gets here.

I have good and bad days. The bad days seem to carry a theme: ignorance and fear of the unknown…whether by myself or someone else.

DISCLAIMER: I am not angry or trying to call anyone out or embarrass anyone. I am trying to sort through this as best I can and decide how best to educate everyone who will be involved in my son’s life.
So what now? How do I break the cycle? I want his birth to be a celebration, not a time of sorrow or fear or pity. I want my family to greedily scoop him up and just love him. He will need all the same things any newborn will need.

*sigh* I don’t know. Like I said, I’ve been in a bubble. When I’m in my bubble, I can see my life with my son. Its everyone else that scares me because they are scared.

This week begins a slew of appointments. Tuesday is the big one- fetal echo! Please pray that Eli gets a clean bill of health and that his heart looks/works the way it should.


20 Replies to “Living in a Bubble”

  1. I think you should post things about Down Syndrome. I know you’ve posted blogs from other people’s journey with their children, but perhaps, a medical standpoint would stand out more to your family? I think people need to know that not everyone with Down Syndrome can’t function on their own. Just like us, everyone is different in what they are capable of! I hope that they open their eyes to the truth and figure out that there’s more to Eli than him just having Down Syndrome! 🙂

    1. Could not have said it better myself! The thing about the medical side of it is that it can be a bit intimidating, negative and scary. A lot of the medical research I have done has nothing but lists of what could go wrong, health complications and how he will look/be different than everyone else. So the blogs of real life people and their real children have helped me more than anything a medical diagnosis can tell me. You know?

      I went ahead and sent an email out to both sides of the family with some resources and a letter from Barry and I. I just need to get better at stepping outside of my little bubble and become more comfortable with talking about it.

  2. Even after 2.5 years there are still times when I feel like I’ve stepped outside my bubble. I think when Eli (love the name by the way) arrives your family will be smitten by him day one. They have a way to suck you in and soon become favorites of everyone! There will be some family & friends that are just unsure about what to say and do but you will get more of the positive then negative. You have already come a LONG way in this journey so quickly but there will be days you’ll hit a brick wall or two. They come and go quicker though!! Just sit back and enjoy this pregnancy. It may never happen again so live in this moment!! (from one infertility fighter to another.) You will miss it!! I can’t wait to meet this little man. He has a fan in Washington!!

    1. Thank you, my friend! 🙂 yeah, I guess its only natural to feel safe in your own home…in your bubble. I know once Eli gets here, he will be loved no matter what. But I think part of dealing with this diagnosis is supportive acceptance and knowledge from those I am closest to. We still have 4 months until he gets here, so I guess until then we just keep learning and anticipating his arrival!

      As for the infertility journey…oh gosh! I’m so afraid it will never happen again. I already know I will miss feeling my child wiggle around inside of me, our ultrasound visits and listening to his heartbeat. I’m not ready to give it up yet! Lol so I know the journey isn’t over but it will be just as big a fight as it was before. 🙂

      1. And although I was optimistic by divine intervention I believe before researching, I see the future as bright on a lot of fronts including awareness which being out and about & online chatting helps every step which in turn makes our extended families and friends more comfortable or more aware of where they are NOT informed or comfortable. Still searching for the right words & what to say and how & WHEN. Time or maybe its maturity (yOu have!) makes the important things clearer.

  3. all you really can do is love your son. love him unashamed in front of everyone. they will follow your lead.

    just wanted to let you know that you have pudge and biggie linked to my blog, i just love you.

  4. I’m almost four years into a high risk for DS and having a son with DS, there is no such thing as over-research. You should definitely take ALL advantage of ANY desire and time and passions you find yourself interested in on this path. Yes, you are on this path and if by some odd set of very unlikely circumstances THREE tests have positive results and your son doesn’t have DS, then play the lotto cause the odds are not with those folks hoping for a different outcome. BUT the odds are HUGE that with the right medical treatments, therapies and ongoing & increasing funding for research too with help from everyone along the way that your son will walk, talk, read, write, live independently without much assistance (like the rest of us, who lives utterly alone without others checking them? Not most of us!), drive and marry.

    1. But it’s fun and FINE to love and spend lots of time in your own bubble. We all need to rever and savory our bubble time. At least until the world is more healed than it is today–and it’s healing every day. PS I avoid computers when I need bubble time too, just a suggestion but other bubble times I rely on my larger global connections A LOT.

      You are much more mature and advanced in your thoughts than most of us even just five years older than you–enlighten us patiently!

      1. And praying for a healthy heart now and always. Check out Downs Heart Group in UK on Facebook if not (and anyway, love Penny Green’s info!!)

      1. What a great, great name too! Eli sounds really smooth and sweet.

        I might be an eternal optimist and I guess you can and likely will over-research but if it helps you and your family then do it and learn how to balance better the next time around. Then share with us all how to do that too! 😉

        You will venture down the path to building your family that you desire and will see it through to whatever makes the right choice for you all. I think you will have patience (or try to!), confidence (usually!) and strength and support. You guys are not alone on that long tough road that tests some of the best & the toughest parents & parents-to-be. You will know. Timing is critical but also one of the things I struggle with the most-patience and choosing when to start tricky journeys…

  5. You look so adorable! I am happy of the way you are handling things, you’re a strong woman and I LOVE his name… Little Eli is just a wonderful blessing!

    1. I can’t wait for you too either!! Its so amazing and exciting- everything I thought it would be 🙂 all the fertility treatments, trials, and tears are worth it! Keep going- us IFers need to stick together!

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