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Bitter/Sweat Birthday

The twins turned 18 on the 28th of July. Yesterday, we celebrated their birthday with a small family gathering. Birthdays are always a bit emotional, both happy and sad at the same time. For typical kids, families celebrate the anniversary of the birth of a child and it is a time to marvel at how much a child has grown and developed. For the twins – and many other children with special needs – the birth date was not a happy time, but a very traumatic and scary time. When the twins were born three and a half months too soon we didn’t even know if they would live or die. At that time we were only thinking in black and white terms, would they live or die. Of course, few things in life are that simple. As we’ve learned, survival was only the first of many challenges we would face.

The 18th birthday is a big milestone for all kids; the boys are now technically/legally adults. We been busy with mountains of paperwork including guardianship, SSI, DDS, ACF to name just a few of the alphabet soup services we need to deal with. For kids with special needs, moving from children’s services into the adult system is a lot of work and red tape, and we have three kids transitioning at the same time. Anthony also turned 18 on May 1st. All three will remain in public school until their 22nd birthday, then we’ll have our next big transition. But these transitions are very different from typical kids; graduating from high school, going off to college, and hopefully becoming independent, productive adults. At least we will never have to worry about “empty nest” syndrome. The biggest worry for us and most parents of kids with disabilities is “what will happen to my child when I’m gone?” syndrome.

On the bright side, the twins are doing amazingly well in spite of their challenges. They are happy, healthy kids who love life. And really, what is more important than health and happiness?

Here is a little birthday party video:

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In The News

Here is a scan from this weeks Grafton News. Hard to believe the twins are 16 years old. I think they were about 18 months old in this photo.

16 years and we are still wondering what their full potentials will be. I guess that is true for all parents, although the expectations and possibilities are quite different. That said, parents of children with special needs usually learn early on that as long as their children are healthy and happy, the rest is just icing on the birthday cake.

16 years ago the twins were born on July 28, 1993; three and a half months too soon. Their due date was October 31, so more of a trick than a treat for their parents. But still amazing how far they have come. Had they been born just 10 years earlier, they would have been a miscarriage, so I suppose whatever they accomplish in their lives is just more frosting. But for myself, I would have missed out on so many valuable lessons. My life would be very different now and quite dull, I’m sure.

We took the twins to Six Flags for their birthday. Cousin Nick came along too and we had a fun time. Happy Birthday Eric and Aaron!

Six Flags New England
Six Flags New England
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Grafton Community Ice Skating Party

Lake Ripple is one of Eric’s favorite places in Grafton.  For years I’ve been meaning to get him out onto the frozen lake, but I never seemed to get around to it.  Part of the reason is because I’m paranoid about water.  Not for myself, but for Eric.  Putting a kid in a wheelchair on water is like attaching an anchor around his waist.  If anything bad happens it would be just about impossible to save him.  We took him out on a schooner last summer.  He loved it, but I was just glad to get him back on land!

Yesterday was the annual Grafton Community Ice skating Party on the lake.  Since it has been extremely cold recently, I thought this would be a good and safe time to take Eric out on the ice.  The biggest challenge was the rather big, steep hill we had to climb down to get onto the lake.  Aaron and I made it down OK, but halfway down I was thinking, this is really dumb, how will I ever get him back to the van!  But there was no turning back at that point… Luckily, there where plenty of people around and when I was ready to leave, I asked three strong guys who were hanging around the bonfire if they would help me out and they did.  I had Eric in his jogger, which made it easier.   Each one took a wheel and dragged him up the hill.  It was worth it though as Eric was so excited to go “on” Lake Ripple and he will be talking about this for days.

Here is a photo of the twins. Aaron calls that hat his “Fargo” hat!  Of course, Aaron has his video camera with him in order to get some “stock footage”.

Eric could not believe that he was out in the middle of the lake!

A nice bonfire provided by the Grafton Recreation Department.  OK, this fire did make me nervous.  Why doesn’t it burn through the ice?  I went over and asked one of the guys tending the fire and he said, “I have no idea!”  That was not very reassuring.  However, I knew that they did this bonfire thing every year, so I could only assume that we were safe… I tried googling it when we got home, but couldn’t find an answer. If anyone knows why it’s OK to light a fire on ice, please leave a comment.

Getting dark and cold!  Aaron warming up by the fire.

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Snowy Weekend

It literally snowed all weekend, we got about a foot of snow. It looks like the roads are fairly clear this morning and the boys all have school (at least as of 5:30am). I got the twins outside yesterday for a bit of winter fun. Below are a couple of photos.

My poor sister and family are still without power! Today is day 11 for them. I can’t imagine. Brian is home from college and not having fun gathering water, chopping wood and shoveling snow. The weather looks pretty good for today and hopefully the crews will get out and restore their power. About 12% of their town is still without power. I don’t ever remember folks being without power for so long here in New England; just crazy!

twins in the snow

Eric & Aaron

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