Monday, May 14, 2012

This week's update & the moment I became Leo's mom

First, a quick little update on Leo this week.  He's done a great job tolerating the cardiac apnea monitor. Even though we've only had 9 alarms this past week (7 for apnea/breathing, and 2 for low heart rate), those are enough to put a parent's nerves on edge.  Especially the 2 occasions when I've been in the car. (With Leo in the back seat facing rear!) Which helped me discover I'm pretty fast at pulling off the road and stopping!  It's made me realize how much he's struggling though, and also made us aware that it's more frequent while he's sleeping. Leo goes back to the pediatrician on Tuesday for a recheck and hopefully a chance to have 2-month immunizations.

On another note, yesterday was a wonderful mother's day.  It had me thinking about the three main reaons I love being a mom.  They are spelled: M-e-r-i-s; S-e-t-h; and L-e-o. Without them, I wouldn't be a mom. (Duh!)  What I really mean is without THEM, I definitely wouldn't be a good mom. They inspire me. To love, to share, to be a better person. Believe me, I've made plenty of mistakes along the way. But their unconditional love for me, and my very deep love for them, make me want to strive to improve myself as a parent every day. What can I say, I've been so blessed by God loaning them to me!

Despite the wonderful feelings I have as of today, the hardest part of feeling like a mom came when we were expecting Leo. I have to admit this out loud, because I'm sure there will be other moms in the same shoes who struggle with their feelings during pregnancy if it's a high risk pregnancy or if they find out they're carrying a baby with DS. I'm hoping these moms will someday read my blog and come to realize that even though they feel this way, their feelings will change. They really will, and for the better! 

To explain things... in August 2010, we experienced a miscarriage. We had tried for months to conceive our third child and the loss was heartbreaking.  But we decided to move on and move forward.  After months of trying yet again, in July 2011 we found out we were expecting. Again! Because of the loss one year before it was really hard to get attached to this pregnancy and baby. I kept waiting for something to go wrong and felt like I needed to protect my heart.

The first sonogram helped to change things – we saw our baby’s heartbeat. Need I say more?  Once you see the heartbeat, you know everything is right with the world. Right?  I still felt a dark cloud looming around, but I felt better.  So I dismissed it, until I got the call on September 22 from my OB. The early diagnostic test (nuchal translucency – a combination of lab tests and sonogram measurements) showed a high risk that our baby had a chromosome abnormality.  At that point, there was a 1 in 5 chance of Trisomy 13 or 18 (both are fatal), or a 1 in 23 chance of Trisomy 21.  My OB wasn’t so concerned about Tri-21, she was more concerned about Tri-13 or -18 and the possible loss of the baby.  And so were we… so back to detaching I went. Because of that, I didn't feel like much of a mom to this baby.
The second sonogram that changed everything – on October 5, I had a level 2 sonogram along with the amnioscentesis to get a possible diagnosis of a chromosome abnormality. I was only 15 weeks along and our mindset was “work mode”, focusing on what might be wrong with this baby… checking for possible defects that might go along with the risks we had been forced to digest. First, we saw the sonographer. She carefully reviewed his tiny organs and measured his tiny bones. Watching this sweet little life tumble around, it’s a bit hard to stay detached from what you are going through – but I managed to do even that. As she ended her review of the baby, and prepared for the perinatologist to come take a look, she asked if we wanted to know the gender of our baby.  Really??!  I had no idea she could already tell, and we certainly weren’t prepared to get attached to a little he or she who may not even survive. So she wrote it down on a card, placed in a sealed envelope, and gave it to us to open “if and when” we desired to know. As Dr. Rinehart re-measured, re-assessed, and prepared for the amnio, he found absolutely nothing other than a normal, healthy baby (as best he could see this far along). So we went from uncertainty and nervousness of knowing who might be in there (a Meris or a Seth), to complete curiosity.  After Dr. Rinehart completed the assessment and amnio procedure, we caved and opened the card which read... 

The third sonogram that changed ABSOLUTELY EVERYTHING, including Me  – on November 2, 2011. At this point, we had almost a month to process the news about our baby boy. We had cried countless tears and felt every emotion possible. We also had time to scour the internet trying to find answers for questions like…., what does Down Syndrome mean for our baby? How will he be? What will make him different? What challenges can we expect? How do we prepare? And in the midst of all that information, we found out about a multitude of possible birth defects.  The main one, the biggest one, and most concerning… heart defects.  Then there was cleft lip, cleft palate, defects involving the digestive tract, etc, etc.  On November 2, came the big sonogram to peek in on all his systems and hopefully resolve our fears.  I had prepared myself for the worst of news.  Instead, Dr. Rinehart gave us a dejavu moment as he re-measured and re-assessed our boy. He found nothing other than a normal, healthy baby (as best he could see this far along). At this sonogram, there was something about the size of the baby at this point, his movements, his sweet face, the way he crossed his feet at the ankles like Seth did in utero, the way he put his little hands by his face (much like he does now, when he’s settling in to fall asleep), that took me from scared and detached to absolutely in love with and excited to be getting “this” boy.  And finally, I felt like a mom.  His mom!

Needless to say, “this” boy soon became Leo.  After a couple months of crying easily and mourning the loss of our idea what our baby should be like, our lives turned into happily planning for the love of our lives to arrive. At this point he could have all abnormalities possible and I could care less, he was going to be perfectly ours.
On March 5, 2012, he was.

Most families I’ve met (or read about, through other blogs) who have a child with Down Syndrome didn’t know about their child’s DS until after they were born. After knowing in advance and having the time to wrap my brain and heart around the idea, I’ve found it really hard to comprehend being handed that news while adjusting to caring for a newborn baby. But I will say with month after month of hearing “He’s a perfectly normal and healthy boy who just happens to have DS”, I can definitely see how parents would never know.  If it hadn’t been for the amnio, we never would have known.  
Isn't it amazing how your feelings can change with just a glimpse?  I’m glad things happened the way they did.  I wouldn’t change a thing, just like I wouldn’t change a single thing about Leo. I'm lucky God picked me to be his mom. I aspire to be the best mom I can to all of my children, and especially to him!
love, Joyce


  1. Wow , powerful and beautiful *tears*. I understand totally. After lsoing Daniel i was terrified to get attached again. It's not easy but you do fall in love you can't help it.

    Thank you for sharing so honestly.

  2. So I'm going backwards a little here, this was beautiful, brought tears to my eyes. You are a wonderful mommy. Leo is as blessed to have you.

    1. I have to admit, I cried writing it. Thinking about how differently I feel about Leo now that I have him (compared to the fear of Down Syndrome when we first got his diagnosis) is something that brings tears to my eyes. Crazy and wonderful how God can take our fears away and our hearts fill with joy. He was meant to be just who he is, and we were meant to have him. Can't imagine life any other way now!