Down Syndrome Awareness Month has Arrived - A Look Back

October is Down syndrome Awareness Month. Some bloggers will be participating in a marathon blogging session called: 31 for 21, where they blog about Down syndrome (Trisomy 21) for the entire month (31 days). Not me! *insert sheepish grin* I would love to be all that I can be and blog every day...but it just ain't gonna happen for this girl, this year. So... I solemnly vow to blog as much as possible this month... and since today is the beginning of the month, I wanted to take a look back at the beginning of my life with Down syndrome. 

I wrote this post on August 12, 2011, when Levi was just 6 weeks old. My perspective has changed a lot since then, but when I re-read this, it brings back all those emotions I was experiencing - like it was yesterday. Maybe you can feel it too? 

Excuse me, my Mama has something to say...

Looking for a Silver Lining in the Darkness

The day little Levi was born was one of the best of my life. But a dark shadow crept into my heart at the moment I first saw his face; I tried to push it away and focus only on the bright spot - the little angel that had surprised us by arriving three weeks early. 

In the moment I first saw my baby's precious face, I also saw something which terrified me. Upturned eyes, a little fold at the inside corner of the eyes and thickened skin at the back of the neck - they immediately made my thoughts turn towards Down syndrome. "Oh no!" I thought and my heart sunk.  I silently chastised myself for being so critical of this tiny human being and made myself forget about that worry for a few hours. The midwife will surely say something if it was a possibility.

After all the examining was done, she hadn't voiced any concerns about him or his health. She gave him Apgar scores of 8 and 9 and left with full confidence that everything was right in our world. I decided to keep my mouth shut about my concern; I would research it further before mentioning it to hubby as I didn't want to seem like I was overreacting. 

The next morning, hubby remarked that something looked "off" about Levi and I couldn't help but respond that yes, I thought so myself and that I think he looks like he has Down syndrome. I tried to appear calm, like I wasn't a whirlwind of terrified emotion inside, but I don't know if I was successful. Once I had given life to my fear, it became an obsession that possessed me until the midwife returned when Levi was 3 days old.

She examined him again, this time mentioning the single palmar crease on both of his little hands. I told her that I had read they might be associated with Down syndrome and she replied that they could be, but that they're associated with a variety of different genetic syndromes. I wanted to ask if some were worse than Down's, but was afraid of the answer. Levi was somewhat jaundiced at that point and so we talked about trying to get a phototherapy blanket from our pediatrician. I thought that if we needed to see the doctor, then we should get a blood test done at the same time to rule out or confirm a genetic syndrome.

To the midwife, I pointed out all the characteristics I had found on Levi which indicated Down syndrome: the upward slanted eyes, a flattened nasal bridge, epicanthal folds, double single palmar creases, a sandal gap on both feet and a misshapen pinna of the outer ear. I was hoping beyond hope that she'd somehow be able to dismiss all or most of these characteristics as being attributable to being borderline premature or just coincidental. She didn't. She pointed out that his muscle tone was pretty good; whereas, most infants with Down syndrome have hypotonia (low muscle tone) and she said that there was only one way to be sure.  

So we went to the hospital for a blood test to find out whether Levi needed treatment for jaundice (it turned out he didn't) and I continued to panic silently about the flaws of my no-longer-perfect little boy. I'd hold it together for a while and then I'd just fall apart, crying until my head hurt. I haven't felt heartache like that since the days when Katelyn was hospitalized after her birth and I honestly felt like she might never come home to us.

But this was different; Katelyn's issue was simple and resolved. This (probable) diagnosis lingers and festers forever - or so I thought. We had blood drawn for a karyotype the next day. The nine days we had to wait to get those results were some of the worst in my life. I wanted to keep talking about it with hubby, to work through all my concerns. I felt like if I gave voice to them, they'd seem more irrational and less scary. But hubby and I are different people who approach these things differently. He didn't want to deal with the issue until we knew for sure that Levi's test was positive.

Thankfully, I have wonderful friends who found a sensitive way to reach out to me to find out what was going on and if we were okay. They were a sounding board for me for several days and helped me hang on to a bit of sanity in an otherwise insane moment for me. And while all of this was going on, I'm trying to make myself take time to enjoy the newborn phase with Levi. I know that this is my last baby and that I will regret it immensely if I look back and only remember the darkness of these days. After all, despite whatever genetic flaws this little person might have, they are not his fault and they do not change who he is. He is my son and I love him intensely. I just have to come to terms with the inevitability of this diagnosis. 

On July 5th, I call the doctor's office and confirm with the nurse that the blood test results are back. She says she will have the doctor call me and so I wait. Finally the phone rings and with trepidation, I answer it. I don't want to because hubby is at work and I don't want to be the only one to know. She says the words I know are coming, "The results are positive for Trisomy 21, otherwise known as Down syndrome." But knowing they're coming doesn't make them sting any less. When hubby walks in the door less than an hour later, he looks at me and I start crying and he knows. He is able to console me and once again, he is the stoic one, my rock which I can lean on when life gets so hard.

Amazingly, this is a turning point for me. The not knowing was so much harder than this. We start seeing specialists and confirm that aside from a slight heart murmur and a small atrial septal defect known as a patent foramen ovale (PFO), he currently has no physical complications as a result of his extra chromosome. The cardiologist wants us to return when he is nine months old to verify that the murmur is gone as he expects and to evaluate whether the PFO has resolved or at least stayed the same size. The opthomologist only detects farsightedness, which is normal for such a young infant and so we're to return at the age of six months for another checkup. The genetic specialist gives us a whole collection of information, which is mostly overwhelming and is still sitting in it's envelope to be addressed at a later time.

Right now, we know that we have a little boy who has three siblings who adore him. Even little Evan, so sometimes appears jealous of Levi seems to care for him enough to drop toys onto him from the other side of the pack-n-play! Katelyn loves to mother him and protect him from Trevor; Trevor loves to tell people how cute baby Levi is. Levi is one lucky little boy because he has a mother and a father who will do anything to help him succeed and despite our forboding and fear of the unknown which lies in wait for us, we are determined to help him achieve whatever his maximum potential may be.

We're still dealing with the shock of this unexpected diagnosis; some days are harder than others. The process is like sorting through the stages of grief. There was denial and anger, bargaining and a form of depression. Eventually acceptance is reached and I don't know that we're fully there yet. We're getting closer every day and seeing Levi's personality emerge only reinforces our love and our determination. 

With taking action, particularly in getting Levi enrolled in Early Intervention to begin physical therapy services, I feel less helpless - less like this is something that has happened to us. I can see a little bit of Levi's personality beginning to emerge and the more I see, the more excited I get about the prospect of our future as a family. I am starting to adapt to our new normal (though I'm sure it will be ever-changing) and realize that although it may be somewhat different than what I initially envisioned, it can still be great! He gives me courage...