Not Too Much To Say Today

Alice has been, well, Alice this past week. This means a great deal of perseveration and not an apparent amount of listening. Oh well.

A woman in our neighborhood was having a “gender reveal” party this weekend. For Alice, the magic word ‘party’ meant that we heard about it at least 5 times a day for the entire week. That wears thin pretty quickly. I had the honor of keeping the secret of the gender of the baby until the party. Take it how you will, this is the second time that I’ve been asked to do this task. People apparently trust me to keep secrets. Maybe it’s because I don’t find it particularly difficult.

Still, in spiite of the perseveration on the party, there was a nice highlight. Alice wore a pretty dress earlier in the week and I decided to take advantage of the morning light and take a few pictures before the school bus arrived to pick her up.

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I don’t always like being faced with the inevitability of her growing up combined with skill deficits, but I couldn’t help but smile at the overall package.



Having a Child with Down Syndrome, Part XCIX: Mother’s Day

Copyright © 2016 Stephen Hawley, all rights reserved.

I was looking for pictures of my mom and it took me the better part of an hour to track some down. Even so, I have no pictures of her from when I was an adult on because I know that my mom absolutely hated having her picture taken and I respected that.


Let’s start with this on. This was taken in 1983, if I recall correctly, when my brother Mike was all set to graduate from Yale. I think my grandfather took this picture, which explains why the framing includes the Apple II computer so well and so little of Mike. At any rate, my mom is very well framed and this is how she looked when cameras came out. although quite honestly, she suffered from depression for most of her life and she looked like that pretty much all the time. I’m bottom row center looking like the disaffected teen I was trying so hard to be.


See, there she is sandwiched between my dad’s parents and even in a candid photo, she still was a wistful look. Incredible. These are the only couple photos I could find in an hour of searching, so I gave up.

Instead, here’s E:


Parenthood hands you an unlimited supply of interesting challenges and every parent worries, most of which come to nothing.  Being the parents of two children with disabilities of very different natures have provided us with challenges of greater magnitude that have come with worries that have turned out to be very real.

Did I ever tell you about the time that Alice got up at the crack of dawn, put on some rain boots, grabbed an umbrella and went for a walk on her own in her pajamas? One of our neighbors brought her home.


But even with the challenges, E managed to smile.


This was at our third Buddy Walk, if I remember correctly – always too late in October, they end up being cold.


Stuart has added a wide range of joy and frustration, but we’ve always loved him deeply and always will.


That’s a tired smile, if I’ve ever seen one. I don’t think we’ll ever have another full night’s sleep and certainly not two nights in a row, but it’s a smile.


No, E’s not making a face, she’s trying to kiss Stuart. He’s having none of that and is taking off her glasses. Both of us have had to have our glasses repaired several times from this kind of abuse.


But still, E has always done so much to expose both kids to the joys of life, both simple and complex. Yes, I know that Alice doesn’t look particularly joyful, but she just went swimming with Evie in Vineyard Sound off of Falmouth.


I can’t white wash it and pretend that every day has been happy and fulfilling, but again, look at those smiles!


Now this is quintessential. My kids recognize that E is a limited resource and when one gets in her lap, the other reacts immediately because, “ZOMG! SOMEONE’S TAKING ALL OF MOM!” It’s part of the reason why E and I haven’t been able to hold an uninterrupted dinner conversation in 13 years.

And that look on E’s face is why every day on mother’s day for the past 5 years, I take both kids to lunch and a movie so she can have some peace for once.

Happy mother’s day, E, and to all mother’s who have to walk a path less traveled.