Changing Our Plans
Photo courtesy of NoahsDad.com.
Almost a month ago, I mentioned that I tested positive after having the nuchal translucency screening for a higher risk of Down Syndrome. And over the past month, a lot has happened.
I went in for my first visit to a high-risk doctor in Wilmington, where we found other markers for Down Syndrome on the ultrasound, such as a bright spot on his heart and swelling behind his neck. When I came back two weeks later, he told me, we would do another ultrasound and if I wanted to, an amniocentesis. At the next appointment, the swelling behind the neck was still there, but hadn’t grown — a very good sign, the doctor told me. He said after two weeks, he usually sees the swelling increase. The heart, although too small to see much detail, looked good. All four chambers were there, in the right size, and working in harmony.
And after two weeks of stressing and changing my mind back and forth, I finally had decided to have the amnio done. Matt had already left for Afghanistan, so a friend of mine came for support because I was quite frankly terrified. The ultrasound screen was on the entire time, but I didn’t want to see the needle go in (something my friend told me later looked really cool), so I studiously kept my eyes fastened to the ceiling. There was a poke into my stomach, and then a little bit of pressure, and then… nothing. After a few vials of amniotic fluid were withdrawn, the needle was taken out and it was over. It was almost painless. I had stressed myself out for virtually nothing.
The doctor told me that he had ordered two separate tests. The first test, called a FISH test, would be ready in about 48 hours and was 98% accurate. The second test would be ready in two weeks and was even more accurate.
Friday night at around 6pm, I got a phone call. It was my doctor’s office, asking if I could please hold for Dr. Wright. I think I knew right then that it would be bad news. He told me the results of the amniocentesis came back positive for Trisomy 21, or Down Syndrome. I had already told him at both of my visits that termination of the pregnancy was NOT an option, and he asked if that was still what I wanted (yes), and he mentioned that in the area, most women made the same decision I did. He answered any questions I had, made sure I remembered my next appointment with him in about a month, and got off the phone. I was able to keep it together pretty well, but once I was off the phone, I started crying.
And honestly, I’ve been crying on and off ever since. Matt was able to call from Afghanistan and handled the news like a champ — he was barely phased by it — but I feel almost crushed. There are so many emotions running through my head, and all of our plans have to change now. And I just don’t know where to go or what to do now.
Hi Cassy,
I was going to start this off by saying I am so sorry, but then I realized that this is not like a miscarriage where it is a tragic end, but more like you said, an unexpected change of plans. You have been given the gift of a special child, one who will be different, yes, but beautifully different and will make you into a better person as you all grow as a family. This diagnosis is not a death sentence, although it may feel like one at first, and that is normal, and will soften eventually, and turn into a breathtaking love when you hold this little one at his birth. Cassy, I have several friends with children with disabilities, one with Down Syndrome and 2 with Autism, and let me reassure you that all three kids are doing great, healthy and happy, and the light in their family’s lives. All the mothers feel “blessed and stressed” as one likes to put it, about their children, but not one of them would change a thing. That’s pretty powerful! I hope that can lift you up, and we are praying for you and your family, especially your newest addition. I am not so unrealistic as to say that this will be easy, because it won’t, but it will be rewarding and life-changing in the most amazing way, I promise you. Think of it as a new adventure, full of surprises and learning experiences. Ben’s little brother will have such a bright future because of you — a strong, wise and loving mother. One who gave him a chance at life, loved him unconditionally and celebrated his differences. My advice would be find community support groups and lean on your friends, family, and church — educate yourself, talk to those with experience, and remember it’s alright to cry. Accept help from others as well, especially with hubby gone. And at the end of the day, this sweet baby is just that, a precious child, not a diagnosis or a list of symptoms. You are going to be ok, you all are!
Here are some resources I got from one of my mommy friends, the one with the little girl with Down Syndrome — hope they help and that I am not crossing a line or being too much in your business (:
http://www.youtube.com/watch?v=c8hJaxrOsIQ&feature=youtu.be
http://nichcy.org/disability/specific/intellectual
http://educ200hcc.wikispaces.com/file/view/Presume+Competence.pdf
http://www.youtube.com/watch?v=Marj_szOJ9k&feature=related
where to go?
go to G-d, praise him, and rejoice
let him have this burden of worry.
you and matthew are blessed and will be blessed.
You have suffered a loss, of sorts, and are grieving. It’s okay…you will work through this. Right now, the only thing you know about this little person is his potential limitations…and your own. Just take it a day at a time. God wants to bless you with this little person and bless him with you. When you meet him, you will fall in love.
Thank you all for your comments.
The past few days have been a lot of ups and downs. I’ll feel good, like I have this under control and I’m ready to handle it, and then a few hours later I’m back to being weepy and depressed. It’s definitely a roller coaster of emotions. I already got in touch with the Exceptional Family Member Program on base, which gave me access to a TON of resources and information, which I now have to wade through and hopefully try to figure out what to expect and what kind of new plans I can make for the future.
One really great thing is that so far, I have not had one negative comment from ANYONE who has heard the news. That’s been a huge blessing, and I think it shows that we have come a long way in accepting people with disabilities. Or at least I hope it does. I want this baby to be treated the same as Benjamin, something I know I can’t always control, but the overwhelmingly positive reaction I’ve received so far gives me a lot of hope.
I have two websites that were on a forum I post to regularly. Warning you will need tissues when you read the birth stories, but this is two sets of parents who didn’t know until the baby was born. One continues to this day, the other seems to just be the birth story. I wanted to share though. Not because of the tears that they shed, but because in both stories they tell of how blessed they are. You need uplifting things to read and follow to help you deal with what you are going thru. I just thought I’d help by giving you these two links.
http://noahsdad.com/story/
http://www.kellehampton.com/