Loving Baby J

October is Down syndrome awareness month , so like I do every single day, I am thinking about Wes. Specifically, I'm thinking about how amazingly supportive my face-to-face friends and my Facebook friends have been over Wes and Down syndrome in general. People always comment when I post pictures of Wes or when I talk about things that we've done with him. But one of the things that is said most frequently is either, "THEY are always so happy!" or "HE is always so happy." I'm not really offended by it, but it stirs up a little something in me that I think I need to put in words. And please, I get it! When someone says that about a person who has Down syndrome, I realize they are saying it with love and compassion...letting me know th at not only do they "see' me and "see" Wes, but that they acknowledge and support us. The intention is good and pure and positive. But let's talk just a minute about the truth...the truth abou...

In my last blog post, I made this statement concerning Wes's "exuberant" loving (i.e., grabbing and biting other children): "I realize that this is toddler behavior and that he will outgrow it, but because I already have a fear of his not being accepted by other children, this was difficult to witness."  The post was written on the day that I had taken Wes to his music class and witnessed him not only making some other children cry with his forceful hugging, but I had also witnessed the looks in some of those little kids' eyes.  It was a little bit devastating.  So when I made the statement that I realized it was just toddler behavior, blah, blah, blah, that was my head talking, not my heart.  My heart was screaming, "Please, other children and your parents, understand that he is a toddler and he just really loves you, and please don't avoid him and run away in terror because he bit your ear." So it was with delight and complete relief th...

I cried twice today.  I've written lots about what an amazing, beautiful child Wes is.  I haven't written about some of the frustrations associated with Down syndrome.  That's the first reason I cried.  Let me back up. I've been taking care of Wes while his parents had to be away.  It is exhausting to care for a toddler at my age, but it is also my greatest joy.  So one of my tasks was to take Wes to his toddler music class.  The thought of this was already causing me some anxiety.  Wes hasn't had a lot of experience with other children except through these classes and trips to the library and park.  He doesn't have siblings yet.  And he tends to love very "exuberantly," a trait that is not always appreciated when it causes another child to cry. During a 45-minute class made up of about 12 toddlers, believe me when I say, there were ample opportunities for loving exuberantly.  In plain talk...Wes made three children cry today....

"What's it like to have a grandchild with Down syndrome?"  "Will he be able to go to 'regular' school?"  "Will he ever talk?"  "Does he know who you are?"  And the first comment many people say when they first hear of Wes's diagnosis: "Oh.  I"m sorry." These are all perfectly legitimate questions and comments that I've heard over the past two years.  I take all of them as a way that people show they are interested and caring.  But I'd like to clarify and explain some things about our little guy. First and foremost, the diagnosis of Down syndrome is not a curse or something to be sorry about.  Honest.  Wes has developmental delays - not developmental lack of abilities.  There is a big difference.  And just so you know...he is very, very smart.  We were just there over the holidays and his communication skills blew me away.  No, he's not talking audibly yet at two years four months.  But he is commu...

This is going to be a long post, so fair warning. In the past 24 hours two seemingly unrelated events came together for me to experience a “big enlightenment.” In fact, it was so big I had to share. It began in a meeting for a college organization that I have facilitated for the past two years - a wonderful group of master teachers who share strategies for engaging students in the learning process. We watched a TEDx talk by professor John Boyer from Virginia Tech. (If you can find 14.49 minutes in your busy day I strongly recommend you watch.) His delivery style made me uncomfortable. His words inspired me. The second event happened last night. My daughter shared some more pictures of Wes. I’m sharing one of those here. This set of pictures affected me like none before. And that’s when I had the big enlightenment. Bear with me please. John Boyer speaks of inspiration and how we have lost that ingredient of education through the constant focus on standardization of learning objectives...

My last blog post was on August 26th.  In the early hours of August 29th (3:30 am to be exact), we got "the call!"  By 6:00, we had purchased plane tickets and were out the door.  I vacillated between wanting to scream excitably in public, to crying, to hand wringing.  And the layover in Atlanta almost caused a necessity for institutionalization on my part.  But...we made it, and we made it in time!  We actual followed my daughter and son-in-law to Prentice Women's Hospital from their Oak Park residence.  Other than my husband coming within inches of rear-ending my son-in-law's car on the way, the trip was uneventful.  We could see Jaime clutching the upper door handle when she was having contractions, so we felt like we were a part of everything.  We were even allowed to visit her in the labor/delivery room, and during one such visit at about 10:00 pm, the doctor said, "You can push."  Oops!  We were still in there, so guess what? ...

We have one week to go till our Baby J is due to be born!  I am excited.  I am scared.  And then I am excited again.  As we near this date, I continue to read and connect with other people who share similar experiences.  This morning I read an incredibly moving blog.  Those words prompted these words: We have a grandson. He has Down syndrome. He is not Down syndrome. He is our grandson.

I haven't written in my blog for a while now.  That's because we are in "the big wait."  As the birth is quickly approaching, though (we are 3 weeks out), I find myself feeling incredibly anxious!  I was more relaxed when it was I who was giving birth!  This Nana thing is a little bit tough.  Not only am I worrying about my daughter, but of course I'm worrying about the baby--none of which is really warranted.  Both are doing marvelously well!  Baby J. has had his heart checked with great results.  Jaime is feeling really well and keeping incredibly busy.  Me?  I'm like a caged animal!  I'm doing a lot of walking and fidgeting and running around.  We have our "to-go" bags packed and in the car.  I've made plans for when I'm gone from my students.  I have the pets covered and the house covered.  The bank knows we are traveling so as not to cancel our debit card.  I've arranged for my hair appointment.  T...

I was fortunate to spend 5 days of mother-daughter time at a cute little cottage in Michigan last week...just me, Jaime, and Baby J.!  It was wonderful!  I felt the baby kick for the first time, got to feel his little hiccups, and generally just relished our time together.  While we were there, though, I noticed something that I can't stop thinking about.  It was her hands.  The first time I saw her hands, they were tiny little fists flailing about uncontrollably seconds after her birth.  Later, they became the hands of a little gymnast--calloused, peeling, sometimes bleeding.  Later still, when she was quite a bit older, her hands were those of a dancer...graceful and soft.  But now...I watched her over and over as she rubbed her baby belly, soothing our little guy.  Sometimes it seemed to be done consciously.  Other times it seemed to be instinctual.  Her hands are now the hands of a mother .  It brought tears to my eyes.

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 f...

I haven't posted in my blog for a few days.  I realized that I needed to just sit with all this for awhile and let myself take it all in.  But today I have some news and some deep thoughts.  First, the news--Baby J had his first echo-cardiogram yesterday.  And no, he hasn't been born yet!  It's amazing what they can do now.  His heart is working perfectly!  That's a big concern with children with Ds--heart problems.  And this is by no means a guarantee that he won't have or develop heart problems later, but we were very happy with this news!  A Level 2 ultrasound (just more detailed) still shows us no additional markers for Ds.  I find that interesting and somehow encouraging.  All-in-all, yesterday was a good news kind of day. Now for some deep thoughts.  Sometimes people will say things like, "Well, it could be worse."  Or..."There are so many things that could be worse,"  or...you get the idea.  I know the in...

There are some things I am afraid of right now.  First and foremost is writing this entry about scary things because some of these things I don't want to say out loud or write.  But I'm going to because I think they might hit home with other people, too.  I've always had a sort of life mantra of "Do something scary every day."  This is my scary thing today--writing about the things I'm afraid of.  Here goes. I'm afraid of not knowing what kind of Down syndrome Baby J. has.  What if it's very severe?  Can I handle that?  I know the answer, but I'm still afraid. I'm afraid that I might cry when he's born.  Oh, my gosh!  Of course I will cry!  And I think they will be tears of joy, but I'm still afraid.  What if my face shows shock or something similar?  I adore this baby already, but I'm still afraid something scary might sneak out of my face at the wrong time. I know he's going to be adorable.  I mean, he's got Ja...

I learned so much in the past week!  And I realize I am still ignorant, and have much more to learn.  But here are some things I have learned: One in every 691 babies in the United States is born with Down syndrome.  I was shocked!  I would have guessed maybe one in every 10,000???  Approximately 6,000 babies with Down syndrome are born each year in the U.S. Wow! There are 3 types of Down syndrome, and we don't know yet which type Baby J. has.  There is Trisomy 21, the most prevalent type, representing 95% of the population with Down syndrome.  There is Mosaicism, representing 1% of the population with Down syndrome.  And finally, there is Translocation, representing about 4% of the population with Down syndrome.  You can read about all 3 types by going to http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/.  This is a very informative website. If you don't want to get all medically technical, here are some things I've learn...

The insights just keep on coming!  Today I've been thinking about myself and who I am and how this impacts Baby J.  I am a woman, a wife, a mother.  I will soon be a Nana.  I am a college math professor.  I am a perfectionist and an introvert.  I process slowly.  I love to read.  I'm not good at any organized sports.  I'm completely at home in the water and love to swim.  I don't like crowds.  I like silence because it never really is.  I like to travel.  I have terrible spatial sense, and I get super frustrated when things change on the computer.  I hate discussing politics or religion.  I love to think about religion.  I hate to think about politics.  All of these things and many more make up who I am.  My conclusion?  Baby J. is and will be so much more than his Down syndrome.  That represents just one tiny little chromosome of his make-up and who he will become.  So today I am pu...

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! :)

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 ...