Skip to main content

The Backstory

May 12, 2015

This is my blog...my first blog.  It's called "Loving Baby J."  So I think I'll start by telling you who Baby J is.  Baby J. is my soon-to-be grandson--our first grandchild!  And Baby J. has Down syndrome.  I think I'd better start at the beginning.
We've been hoping for a grandchild for a very long time, as our two children are in their mid- to late thirties.  Christmas Day of 2014 we got the long-anticipated phone call.  Our daughter and son-in-law had just discovered they were pregnant!  I can't even describe the excitement and anticipation we felt, even though it was very, very early in the pregnancy.  There were some ups and downs over the next couple months for our daughter (not us--we remained ecstatic!).  She worried about carrying a baby at age 34-35, but when she saw her first ultrasound pictures, she made it over that worry hump.  In fact, she was so much over the worry that we both started buying lots of "gender-neutral" baby stuff.  That's what grandmothers are supposed to do, right?  And we waited with anticipation for the 20-week ultrasound that would hopefully tell us whether we were having a granddaughter or grandson.
Twenty weeks arrived with no pregnancy complications and Jaime and Ryan went in for the ultrasound.  They were delighted to find out it was a boy!  At the time of the ultrasound, the doctor told them that she saw what is called a "soft marker" for Down syndrome.  It was a small bright spot on his heart.  She told them that she sees this every single week, and it is almost always absolutely nothing--sometimes just a reflection on the picture.  So Jaime and Ryan weren't too worried, but they decided to go ahead and have blood drawn for a Ds screening.  Jaime was told the results would be back in about 7 days and not to worry.  Easier said than done!
Seven days came and went with no results.  She called periodically, anxious to put their minds at rest.  Finally, on Thursday of this past week, Jaime got a disturbing call.  The screening had come back positive for Down syndrome.  And this is where it gets a little complicated.
The particular screening that they had (for women over 35) has a 97% accuracy rate.  This was shocking to our kids because they were under the impression that as a screening, it wouldn't really mean anything other than they might need more tests.  They didn't know about this 97%, nor did we.  However, it's 97% accurate for those who have a true positive result.  There are a number of "false positives."  So...of course they were scared and upset.  I would say they were devastated, but that's not true.  It would take something much worse to devastate any of us.  But they were definitely upset, as were we.  I felt personally upset, but also realized that as a mom who is very close to her daughter, I had to be strong.
Jaime's doctor told her that it would be a good idea to have an amniocentesis to confirm the screening results.  Jaime was very nervous about the amniocentesis as she understood the slight risk to the baby, but with our encouragement, she and Ryan decided to have it done the very next morning.  This was Friday...just four days ago.  She went in early that morning and had it done, relatively painlessly and without incident.  They were told they would know the results by the end of the day. We talked after the procedure, and I could hear the fear and nerves in her voice.
All day, John and I waited.  And we knew Jaime and Ryan were waiting.  I need to say something here.  John and I were completely accepting of the possibility of Baby J having Down syndrome.  We knew that we could handle it, and more importantly, we knew that Jaime and Ryan could handle it.  But to know your daughter and son-in-law are on pins and needles, with anxiety and fear, was almost more than I could handle.  As the afternoon wore on, I began to realize that this was not going to be good news.  Because if it was good news, wouldn't the doctor want to call them immediately and relieve their anxiety?  If it was not good news, she would want to wait till the end of the day to call so she could spend as much time as needed speaking with them.
At 5:10 pm, Jaime called sobbing to tell us it had been confirmed. Baby J has Down syndrome.  Again, we all knew we could handle that, but it's still shocking, no matter how much you think you are prepared to hear those words.  I felt very inadequate as a mother because there was just nothing I could say to make it better, other than we knew they could handle this.  I did put on my mom voice and told her she needed to go ahead and go into work the next day.  I thought it would be a good temporary distraction for her and would help her re-group. Jaime is so strong!  So is Ryan.  They both did exactly that, and we are so proud of them!
So...the past four days have been a series of highs and lows.  I have only told people by phone so far.  I'm not quite ready to tell people in person.  And how do you do that, anyway?  Do you say, "We're having a beautiful baby boy and we already love him to pieces, and oh, by the way, he has Down syndrome?"  I don't know how to do this, but I think we will figure it out.  John and I have been on constant stand-by for Jaime and Ryan--we want to support them and encourage them and love them!  But sometimes it's so hard not to just go to pieces.  I can say this for sure...all my tears so far (with one exception) have been for Jaime and Ryan--not for us, not for Baby J.  I just feel so sad to know their dreams have been changed.  Just once I broke down for me and cried.  I think that needed to happen.
So that's our story so far.  We've all been researching Down syndrome and talking to lots of people.  Friends and family have been so supportive!  Everybody seems to know somebody who's gone through something similar and they are willing to put us in touch.  It's kind of amazing!
I loved my little grandson before Friday.  But over the past four days that love has mushroomed into something more!  I adore our little guy!  He's already special and unique and I can't wait to meet him!!!  Baby J, this blog is for you!

Comments

  1. Sherry, this is such a beautiful thing you are doing. A blog for Baby J....such a special baby is lucky to be born into such a special family....and such a special family is lucky to have Baby J :)

    ReplyDelete
    Replies
    1. Thank you! That's exactly how we feel. :)

      Delete

Post a Comment

Popular posts from this blog

Expanding Our World

Last night after two long days of traveling, I connived my husband into watching "So You Think You Can Dance" with me.  It's one of my guilty pleasures.  If you've never seen it, there are some really spectacular dancers who show up to audition.  Three judges decide whether the audition is worthy of a trip to Las Vegas for further auditioning.  I find it to be fairly authentic and serious, as opposed to American Idol (which I still watch, BTW) which is often ridiculous and "fake."  Anyway, one of the last dancers to take the stage was a young man named Cody.  Cody has Down syndrome, according to his mom who was sitting in the audience.  It's the first time I've seen a person with Down syndrome audition for any of these kinds of shows.  Cody has some fairly serious speech difficulties, but was able to introduce himself and explain what he was there for--to audition with a hip-hop piece.  He then said that the reason he came was that he was a fan of Ja

New Insight

Today has brought on some very new and interesting insights.  I want to start with my daughter.  As I said earlier, Jaime and I have always been very close.  But I've always thought of her even at this age as "my little girl."  I know.  Kind of silly.  I mean, she is 35 years old.  But it's a mom thing.  So when she and Ryan got pregnant, I still thought like that.  And I thought that way when she called with this news of Down syndrome--I needed to be the comforting mom.  But in the past 48 hours something has completely changed.  I see her now for the amazing woman she has become.  She has taken this news and just run with it!  She's made contacts and done research; she's cried; she's rebounded.  But most of all I have sensed this intense resolve...a tangible change I can feel through the phone.  I am in awe!  And I am so very proud!  She and Ryan have GOT this! :)