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2006 Christmas Letter

An entire year has passed since I wrote the last one of these letters, and here I sit, again, trying to compress all of that time onto one page.  If I could be content to simply write about Emma’s accomplishments for the year, this probably wouldn’t be such a chore for me.  Instead, just like the past three years, I find myself burdened with an insatiable desire to convey to the world what it has been like to be us for a year.  If only life could be calm and relatively uneventful, then maybe, just maybe, I could find myself in a place where I deem it necessary to write only a simple summary of a year’s events.  Life, it seems, has other plans for me.

That fact became painfully evident when it came time to write this letter.  We had a trip to Disney World planned for the holidays, and we were leaving for Florida on the 23^rd.  I had set aside a few evenings during the preceding week to work on the Christmas letter and a photo, and get everything mailed.  Instead, Emma got sick and ended up in the hospital for a couple of days, and of course, writing this letter dropped to the bottom of a very long priority list.  She had a high fever and she wasn’t eating or drinking, and when we forced her to eat something, it came right back up.  They pumped her full of fluids via I.V. for two straight days, and discharged her after she finally starting eating again, just two days before leaving for Disney.  Even though multiple urine tests showed that Emma still has a rare, difficult-to-treat bacteria in her bladder that has her doctors perplexed, Emma has been completely free of any symptoms since she was discharged and we all had an absolutely wonderful time in Disney, Sea World, and of course, seeing Great-Gramma Goldsberry for the first time.  The last two weeks of the year became an absolutely perfect example of the roller coaster ride that is life with Emma Hope.

We started off 2006 in good spirits.  At that time, I believe that Amy and I were both at peace with the fact that Emma has SMA, and that she is never going to be like the other children.  That’s okay with us, because Emma is better than all of the other children.  She is smart, beautiful, genuinely caring, and an absolute joy to spend time with.  Yes, sometimes she can be the world’s most horrendous spoiled rotten brat, but we saw that one coming before she was even born.  Her language skills and intellectual abilities have progressed delightfully, and at the age of three, she has become a person that can engage in meaningful two-way conversation.  Emma’s sense of humor has evolved, and although insult comedy and phrases with the word “booger” in them are still the workhorses of her repertoire, she has even managed to experiment with a little sarcasm.  To our joy, it seems that Emma is also at peace with the fact that she has SMA.  She understands that she can’t walk, but it never seems to really bother her.  She always has her wheelchair or another person to bring her to wherever she wants to go, and if she sees another child doing something that she can’t, like running or dancing, she is happy to do just that in the arms of an adult.

At the end of 2005, we got Emma a used wheelchair so that she could be mobile like everyone else her age, and she did a good job taking advantage of it.  It was in rough shape when we got it, but I soon had it stripped and powder-coated (pink and black with sparkles) and re-upholstered.  We wanted to finish it before the end of January because we were going on our first-ever cruise.  It was an eleven-day trip on NCL through the western Caribbean, and it was considerably more fun than we had hoped.  I know that Emma had a great time, but ask her what she remembers, and the only thing that she’ll tell you is that she vomited on her purple pajamas and got to see the ship’s doctor.

I remember stating in the last letter that I was considering a real job.  Well, [cough] just before we left on the cruise, I went on a [choke, cough, die a little inside] job interview.  After we came home I went on a second interview, and a few weeks after that, sure enough, those bastards offered me a job.  I am now an engineer at a company that manufactures the world’s most dependable jet engines.  Amy still works for the city of New Britain, and I still have the dyno shop - but I’m only there a few evenings during the week and some Saturdays.

Shortly after we got back from the cruise, we decided to try weaning Emma off of her anti-seizure medicine since she had been on it for a year.  She seemed to get a little stronger as we lessened the doses, but five days after we stopped completely, she had another seizure, so we immediately put her back on.  A short time after the seizure, we noticed that her right eye was a little lazy, so Amy brought her to the eye doctor for an exam.  One of the technicians performed a test and subsequently told Amy that Emma was pretty much blind.  No, I’m not making this up.  You can imagine the phone call that I got from Amy just then.  The doctor came in soon after with a better diagnosis and wrote a prescription for some glasses.  It has now been about nine months since then.  Her right eye is still a little lazy sometimes, but it has gotten much better.  It seems that Emma’s vision without glasses is a little better than mine, as she can see some things that I can’t.

Throughout the year, Emma got to do what I imagine is quite a bit more than what the typical three-year-old gets to do.  In addition to the cruise and the trip to Florida, she participated in countless beauty pageants throughout New England, went to Cape Cod for a few days, went camping with other kids that have SMA at an Easter Seals camp, went to an air show, and to the New England Aquarium.  In August, Emma started riding a pony on a weekly basis.  We had done some considerable research looking for hippotherapy (horse riding,) which is supposed to be great for kids with SMA and similar conditions, as the motion of the horse forces the rider to tense up muscles in the legs and torso.  Emma is still too young to enroll in an official program, but we managed to find an amazing woman just a few streets away that has opened up her home and barn to us.  Not only does Emma get to ride a pony every week, she gets to feed a half-dozen other animals, and she has even milked a goat.  On September 2nd, Emma turned three and graduated from Connecticut’s Birth-to-Three program, which qualified her to attend a special Pre-K program.  On September 5^th, Emma started school.  She now takes the bus from her daycare to her morning class at the local elementary school.  Her daycare is also new, as the other one that she was attending closed earlier in the year.

A few weeks after starting school, we decided that it was time for her to bring her new power wheelchair.  She received it in August after a three-month battle with the insurance company.  Other parents watch their children become mobile and able to explore the world over the course of months - we witnessed the transformation happen over just a few days.  Bruised feet aside, watching her zoom through the house or across the yard, finally able to pursue an object of curiosity on her own, is one of the most delightful things that I have ever seen.

In November, our roller coaster took a sharp turn downward.  Lars, a true member of our family for the past seven years, passed on after two horrific weeks that caught us completely by surprise.  One day he was fine, and within two days he deteriorated to the point where we brought him to the vet for some x-rays.  He wasn’t eating, he was shaking, and he had trouble standing, walking, and putting weight on his legs.  He was diagnosed with a severe whipworm infection and “wobbler syndrome” a nerve problem common in Dobermans.  Lars had his good days and his bad days, but on average, he quickly went downhill.  A few days after the vet visit, he got the bloat.  I rushed him to an emergency clinic that night to get lavaged.  He seemed to recover adequately a few days later, but he got the bloat again within a week, and I made the most awful of decisions at the clinic after rushing him there again.  Subsequent weeks were very difficult for us.  We told Emma the truth as best we could, but we’re still not sure how she processed the information.  We do know that she was frightened to go to the doctors for a long time because she thought that she would never come back.  For better or for worse, we also figured that it was the right time to tell her that Rock (her fish) was also gone, but we chose not to tell her that it was actually Rock 2 that we secretly flushed a few months earlier.