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.

Letter to Family

Dear Family/Friends,

As many of you know, my husband and I are expecting our first child in May! 🙂
We have learned that we will be having a boy and we are so excited about this new addition to our family! It’s been a difficult road to getting pregnant and after fertility treatments and one cycle of IVF, he is certainly a miracle!

We have recently learned that our precious baby has Down Syndrome. We learned the results through a genetic test called an amniocentesis, which is virtually 100% accurate.
While it seems that he has no physical health issues as if right now, our doctors will be monitoring him carefully.

Of course this news has left us anxious, upset and shocked. We are still adjusting. If you see me, I may be showing signs of shock, but I have learned from other parents that we will move away from this time of turmoil to a place of excitement and amazement. One thing we know for sure: we love our son and we hope you will join us in welcoming him.

I know that you must have many questions, and I will try my best to answer, but we have a lot to learn in the next few months about Down Syndrome. I have already started to research! Some of the most important things we have learned are that each person with Down Syndrome is a unique individual, and that recent advances in medicine, education, and acceptance have greatly improved the lives of people with Down Syndrome. More importantly, we have learned that our son will live a rich and rewarding life, and will enrich ours as well.

I know many of you may not know what to say to me when you see me — I understand. I’m not sure I would have known what to say either. I would appreciate if you could avoid saying, “I’m sorry.” Instead, if you could pray that he continues to be healthy and that the remainder of this pregnancy is uneventful. 🙂

I will keep you updated about any issues that come up and when our baby arrives. Thank you so much for your support and for welcoming our little one.

-Barry and Ashley

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
Psalm 139: 13-14

Doctor’s Visit

Row row row your boat…
Haha we are trying to navigate the flooding streets of Houston on our way back from the doctor’s office. We need the rain, but this is crazy!!

Dr. C was very supportive. He, of course, laid out our “options” (our non-options because the only option is to continue). He pointed out that many parents chose to terminate because they are afraid of what will become of their child when they are no longer around. That’s legit. I understand but it changes nothing for us.
Once I let him know we were keeping our son, he moved on.

-I am not high risk, you are precious and Dr. C will do everything in his power to treat me as such.

-There is apparently no way to know what T21 he has at this point.

-No reason to meet with a genetic counselor or DS clinic right now but possibly later. Still waiting for the full amnio results to come back. Maybe need to discuss this further with my MFM doc.

-Stillbirth and preterm labor are not concerns. I am on progesterone injections and have no perterm labor warning signs. I will be seen every other week and treated as a normal pregnancy. Should a stillbirth occur, it won’t be due to an unhealthy pregnancy.

-Fetal echo is being scheduled. Tyroid and gluclose are also being set up.

-NST will begin at 30 weeks when needed.

-I do not need to register with the hospital right now. Dr. C will make them aware of our situation when the time comes.

-Dr. C gave me the number of another women who’s son he delivered with DS to connect with 🙂

-We have the green light for TTC as soon as we feel ready after the baby gets here.

-Based on everything he can see, this is a normal pregnancy with “something extra”. Baby boy is healthy and everything looks good right now.

So that went very well! MJ did our ultrasound and we got a bunch of grainy pictures. We saw his little nose and eyes. He was waving and turned his head to say “hi”!

The two dark spots are his little eyes looking right at us! He even waved 🙂

This second one is a profile view, the small oval near the top of his head is his little hand.

I read “Welcome to Holland” (plus the extended version) last night and I can say that I feel very much the way it describes. Since we have no baby to hold, no way of knowing what the future really holds, and since DS is still such an abstract concept…well its difficult to be strong all the time. Waves of fear and sadness still rear their ugly head but more of the time I am happy and anticipating his arrival.

We plan to stay out in this nasty weather to go look at nursery bedding and ideas. I kind of like a new bedding set at PBK and I want to see it in person.

So I guess that is it for now! We got a lot done and I’m feeling pretty darn good right now. 🙂