I recently posted that my baby Sawyer has Downs Syndrome. The post was a hard one to write. There are a few pieces I am writing that are turning out to be harder. I am not sure that they will ever make it to a post, but they are healing pieces to write even if no one ever reads them.
I promised Jay I would not make this blog ‘about Downs Syndrome’ (that would, after all, be doing the exact thing I was posting about NOT doing before, now wouldn’t it?) and I have no intention of doing that, but this thing is called “Minding Marnie” for a reason. And this is what has been on my mind.
It occurred to me after posting about Sawyer that when I have told individual people about his diagnosis, it has always been during a conversation and there has been more of an explanation of how and what we know. Since I know that many of my friends and family read this blog and some of you I have not yet been able to have that face-to-face conversation with yet, I will attempt to do so here.
First of all, we did not know Sawyer had Downs before he was born, although we did know there was an elevated risk. We had one doctor telling us she thought he was fine and the risk was low and another telling us he was highly concerned. Jay and I decided there was no use in running the risk of an amniocentesis because we would not have terminated the pregnancy regardless of the results [That is our choice and we make no judgment on those who make the same or different choices. We did find out that over 90% of fetuses with Downs are aborted, however. I am not sure how I feel about that]. We even had differing opinions as to whether or not he had it after he was born. But we had a genetic test run and when he was 5 days old the FISH analysis came back positive for Trisomy 21. And, yes, as much as it tears me apart to say it, at this point my age is the only factor we know of that could have caused it – at least going with what we know about Downs Syndrome to date. However, everyone I know who had kids at 40 and over did not have a problem, while the few Downs children I know of were all born to mothers under 35. Go figure. We have an appointment with a geneticist in February to find out more.
Second, so far as we have been able to determine, Sawyer has none of the health problems associated with Downs Syndrome. He has an extra vein to his heart, called a Left Vena Cava to Coronary Sinus, and a small millimeter-sized hole in the wall between the ventricles. Both conditions are benign and will never even need monitoring, much less any kind of intervention like surgery. The pediatric cardiologist actually found the extra vein while I was pregnant (how cool is that, uh??) and a cardiologist found the hole when Sawyer was born. Neither condition led to any extra precautions, even though, due to jaundice (unrelated to Downs), Sawyer did stay an extra day in the hospital. The LVC (extra vein) is very rare, even among Downs. When I told my brother (who is a nurse and recovered cardiac patients in CV-ICU for years), he said how cool it was and that if Sawyer ever had to have bypass surgery they would not have to take a vein out of his leg, they could just use the extra one he already has! I suppose that is one was to look at it, though I wasn’t thrilled with him imagining the future open heart surgery of my as-yet unborn son.
There have been no indications that he has any gastrointestinal problems, which can be commonly associated with Downs. He has appointments with an ENT and ophthalmologist in January, but those are just a precaution more than a concern. He passed his hearing test with flying colors and he sees as well as his siblings did at his age.
This is such a blessing because so many babies, whether they have Downs or not, are born with heart or other problems. While knowing Sawyer may have extra challenges is hard, I cannot imagine what it would be like to have him and lose him – or never get to know him at all. I know people who have lived through that and worse and my heart goes out to them. Even more so now.
Third, Sawyer has been evaluated by the state agency already and will start having physical therapy for an hour once a week in January or February. He is holding up his head and starting to coo and smile. His muscle tone seems normal and he will lie around and kick and flail his arms. Over the last couple of days we have noticed that he has found out there is a hand at the end of his arm and he is checking that out quite a bit when it comes across his field of vision. In other words, up to this point he is developing like a normal baby, keeping in mind that he was born early at 35 weeks.
In February Sawyer has his first appointment at the Emory Downs Syndrome Clinic here in Atlanta. From what we understand, the Emory Downs Clinic is one of the best there is and we are lucky to have such great resources so close by. This has quickly shot up to the top of my list of reasons I am glad to live in Atlanta.
There are, as you can imagine, a whole host of support groups and such for families of kids with Downs Syndrome. However, if you’ve paid much attention to previous posts, you will know that Jay and I are not exactly the overly social type. While we will eventually reach out to certain resources, we have not yet joined the community and are unsure when we will feel comfortable doing so.
Lastly, he does have a few of the physical Downs characteristics – the fold in his eyes, curved pinky finger, separation between his big toe and other toes, small ear canals and nasal passages and a couple of others we have identified – so you can ‘see it’ when you look at him, but it is not overwhelming. The doctor that delivered him didn’t see it and told us not to worry and that he was fine. Does that make me feel better about it? Some . At least for now.
That is all I know. Anything beyond this is speculation. The rest is one big, huge, overwhelming Question.
How long will it take him to roll over and crawl and walk? Will he have problems learning to talk [Not with my Granny’s genes in him, I’ll bet. Although he may have a hard time getting Ezra to shut up long enough for him to get a word in edgewise]? Will he have a learning disability? Will we be teaching him “life skills” instead of algebra (I mean, will Jay be teaching him algebra – I couldn’t teach him his multiplication tables… but you see where I am going with this)? Can he go to college? Do we need to make provisions in case he is unable to care for himself? What will his life be like? Will it be a long and happy one?
Will he read this one day and will it hurt his feelings?
From there the questions get even more terrifying.
And I don’t know the answers to any of them. Of course, being human, this scares me more than anything. It is the not knowing that gets to you. From the research my friends and I have been able to do, there is no way to know. Doctors don’t really tell us that much more. He may not have any delays. He may have some we expect and others we cannot imagine. He may excel at something we don’t expect, either.
Just like any other kid.
I think my first lesson from Sawyer is going to be to let go of my expectations. Jay is much better at this than me. He accepts. He accepts Sawyer and he accepts that we don’t know what raising him is going to be like [I totally love that about Jay. It is one of the things I most appreciate in him, even though his nonchalant acceptance seems so easy that it is maddening]. I am a worrier. I try and look at things and imagine every possible outcome and extrapolate all the possibilities. Even knowing that this is impossible cannot stop me. I have paralyzed myself doing this more than once. But it is a lesson life has been trying to teach me and I have been refusing to learn.
I have spent more time than you can imagine managing expectations. I have spent far less time putting my best foot forward and seeing where it would take me.
Man, I have a lot to learn from this kid.