One good birthday, one good year

30 04 2007

Ben at the feeding clinic

Today was Ben’s birthday, and we were back at the hospital, this time to meet with the feeding clinic. That made it a good reason to be there, and things went well, but the spring air and the trees budding around the hospital brought some of those feelings back from last year. It’s hard to go through the day without thinking “Where were we now?” a year ago. And right now we were in the hospital scared shitless. Ben was just a few hours old and we knew something wasn’t right. We didn’t know that this night would be the easiest night we’d have for a long time.

For those who don’t know, our youngest son Benjamin has Cornelia de Lange Syndrome. You can read about it on Karen’s blog.

Some random thoughts on our first year with Ben:

When Ben was born I wanted to be the one to tell Mommy whether it was a boy or a girl (we’ve never found out early), so I was looking “down there.” Apparently my attention was so focused that I missed seeing his right arm. His partially formed right arm. “Never mind that, is there a scrotum or isn’t there?” (That’s not what I said) We all have our priorities.

It took us a while to name him, at least an hour, maybe two. We’d really struggled with names during this pregnancy, especially for boy names. We picked a name while he was in the nursery with the pediatrician. First we picked Benjamin, but we were having even more trouble with a middle name. A three syllable first name is tough to follow, so we picked Emmanuel; plus I thought we might need God to be with us.

There are times when I think that my kids have life figured out better than me. Some time in those first couple of days Isaac asked his mommy “Why does Ben only have one arm?” Mommy was very honest and said “That’s how God made him.” Isaac paused, thought things over, then turned to Mom and said “That’s not fair.” No it isn’t.


Of all the toys Benjamin has played with, stroked, or squeezed, his favorite toy is his little arm. It is also Jonathan’s favorite toy.

When Jonathan was born Isaac liked him immediately, but nothing prepared me for the affection shown to this little child by his big brothers. They simply adore him, and he returns the sentiment. Isaac likes to hold Ben and help take care of him; Jonathan plays with him incessantly. I’ve given up saying “Jonathan stop that!” because Ben usually has a smile on his face when I do. Now I say “Be careful.” Everywhere we go there are children that ask about Ben; “What happened to his arm?” and “What’s that tube sticking out of his shirt?” Isaac is ready and quick to answer all their questions; he is so proud of his baby brother. Jonathan is starting to be that way with the kids at preschool.

Jonathan was the first person Benjamin smiled at.

Jonathan rocking Ben back and forth

Thank you to our friends who babysat Isaac and Jonathan while Ben was in the NICU. Thank you to Aliyah who watched them when Karen was in labor, and helped out around the house also. Thank you to my father- and mother-in-law who flew up from Trinidad to be with us and to watch the boys while Ben was in the NICU, and then during his surgery. Thank you to all the families from Isaac’s preschool who made us dinner for almost a month. We had so much food we had to freeze some. Thank you to the people from Karen’s office who gave us $400 in gas cards since we had to drive an hour each way to visit Ben in the NICU. And thank you to everyone whose thoughts and prayers helped us get through one tough year.

Benjamin is fascinated by his feet. A couple weeks ago he was sitting in his Bumbo seat in front of some toys we had for him to play with. Brightly colored toys hanging from a mobile, and he’s craning his neck to see his toes.

Isaac and Ben playing with cousins

Benjamin also seems to have life figured out. We’ve received and we’ve purchased a lot of toys for Ben, more than I thought I ever would for a third baby. He enjoys playing with his toys and likes to roll on the floor from one to the other, but they never make him smile like he does when he’s playing with people. He truly craves human attention and interaction. Perhaps this is why he likes Jonathan so much.

I went for a walk with Jonathan this evening. We were gone for about a half an hour, and he never shut up once. I didn’t hear all of what he said. Okay, I didn’t hear most of what he said, but I didn’t have to. We were just walking and he was happy to be out, just the two of us.



5 responses

1 05 2007

Having already posted on Karen’s blog earlier tonight, I came back to my hotel room (I’m in St. Vincent btw) and checked your updates;

While reading, over and over again, I kept thinking, that with you as the head of the family, everything will be OK. Your love for your kids, and indeed your wife (my sister) is never ending. I know this in my heart. You see, the efforts you have made to for me personally when I visit are far beyond what any ordinary brother-in-law would make….and if you do these things for me, I know that there is NOTHING that you won’t do for your family.

I know that it has not always been a bed of roses; indeed I have sometimes made your life difficult myself (like with drives to State College LOL) but I would like to personally thank you for being a good father, husband and in-law. I know that you guys will be great once you stick together.

1 05 2007
Daddy Forever

Happy birthday, Ben! That’s really sweet the older brothers love the baby and vice versa. Our kids are like rivals and they drive me crazy when they fight with each other.

1 05 2007
Marco Polo

Thanks for sharing this, Mark. I knew nothing about CdLS (what I don’t know, you could fit inside the Milky Way, tho my wife disagrees), so I visited your wife’s blog to learn more. Our youngest has Downs’ Syndrome, so we have a syndrome in common, We love her to bits, tho her brothers are not so generous.

The other thing I know nothing about (sorry, that shoudl read ANother thing) is cooking, so I’m hoping to pick up a few tidbits, I mean, tips. Keep writing. Your warm humour is much appreciated.

1 05 2007

I admire the two of you very much and am so very blessed by the courage and strength you have. I have really enjoyed getting to “know the boys” so much more this last year (as well as I can given the distance). Phone calls and emails just don’t do the same thing. I love all the pics and Mark, you make me laugh. πŸ™‚ You guys have done a neat thing by allowing the rest of the world an opportunity to know your family. Hey, you’re famous!

God’s richest blessings to your marriage and your home, and

Happy Birthday Ben! You’ve come a long way! Looking forward to seeing what God is going to do in and through you! You’re a gift from God to your mommy and daddy and to the world. πŸ˜‰

1 05 2007

Your children are truly blessed to have you and Karen as their parents. I’m sitting here at my desk crying reading this. I am so overwhelmed I don’t know what to say. Love to all of you.

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