2014 Our terrible, no good, very bad year where we all learned to be a little braver

When Joe asked me to write a Christmas letter this year, I simply rolled my eyes. Because 2014 was one of the hardest, most difficult years of our lives.  I didn’t think a smiling Christmas card with all of us with perfect hair and clothes ironed out represented our year, it didn’t feel like us. Most of the time Andrew’s hair is sticking straight up, Katie’s hair is constantly a mess, and I’ve gone to work more than once this year with my shirt on backwards and two different shoes on. So I decided instead to talk about our terrible, no good, very bad year where we all learned to be a little braver.

I knew this was going to be a bad year before it began. I dreaded it, worried about it, hated going into the year, for 2014 was another huge marker in time for me. It marked a whole decade, 10 years, since I last got to hold my love in my arms and my miracle son died. Someone asked me this year how often I think of Christopher, and my answer was every second, of every day, as much as I do Katie and Andrew, that never goes away. People just forget to ask you how you feel about the one that is missing. When you are a bereaved parent, it is not Christmas or Thanksgiving you dread, there are meals to be cooked and stockings to fill. It is all the holidays in between, school pictures and first day of school, and the most dreaded holiday of all, New Year’s. Because 2014 is a decade away from when I last got to hold him, and 2015 marks 10 years +1, and so on the calendar must role and each year creates a marker in time from when you last saw them. So when New Year’s came, I knew it would be a year of markers and change. We talked a lot in our family this year about being brave, about what it means when life is really tough and how you get through obstacles.

March brought unexpected spine surgery for me, I could hardly move or walk, months of rehab, and I still continue to have problems and pain. The surgery went well, but I had to quit my job, and there was 8 months of silence for me. I have never gone 8 months without working or going to school, without somehow trying to achieve another goal. But in the silence brought a new-found peace, and a dream job as a Transplant Coordinator for a major hospital working on organ transplants and helping patients at night from HOME. (No more before and after school daycare!) I had never had silence before, or stillness. One day I looked at Joe and said “I don’t know what to do, so I’m going to go to Capital Hill and fight for Christopher.” That’s exactly what I did. I joined the legislative committee of the MPS Society, I went to the FDA and Capital Hill and had lunch with a congressman, and got to tell my story, and why we need to work harder to save our children. I decided this will be my “day” job, it is time to get to work for these children that fight cancer and diseases, time to be even braver and fight even harder, and I have many plans for 2015 to keep going to the Hill and doing just that. I found in volunteering for Christopher, it allows me to use what I have been missing. That “mommy” energy for him that doesn’t go away.

In May Joe had surgery for a large tumor in his face and neck. I had put the surgery off for him because I’m a nurse, and simply I knew too much and it scared me too bad where the surgeon had to cut.  The tumor was bigger than expected, but the results were benign and despite the large surgical incision, he bounced back quick and made a quick recovery. This year marks 11 years of having his own company, and he has grown it to 13 people. I remember the day he came and told me it was time to quit doing his company part time and in order to do this full time, he needed to quit his  current full time job with a large government contractor. We had just lost a child the year before, we had a sick premature little girl that spent her first year of life at a hematologist with medical bills through the roof. What we didn’t know was we had another surprise around the corner the next year. He sat down and promised he would take care of us and nothing would ever happen. I was dazed and simply said “ok” and he stuck to his promise. It finally hit me this year how scary and yet how brave that was. To leave the comfort of a stable job for the unknown, with the tragedies we had faced still an everyday occurrence at that time. When I told him this year, how brave I thought he was, Joe simply shrugged his shoulders and responded, “our life is always chaos, it was just another day.” And so starting a company was just that, just another day…

At the ripe of age 8, Andrew is finally outgrowing his size 5 pants and growing into size 6’s. He can hit a baseball like crazy and wants to be a Pitcher for the Nationals. Being a little vertically challenged, he had a difficult time trying to ride without training wheels or swim across a pool. But he took those little stick legs and finally after trying all summer could get off his training wheels, he was terrified of falling. In May he swam a lap across the pool and could do swim team. Andrew was scared he was going to drown, and for him to swim a lap across the pool was like someone climbing to Mt. Everest. He did it. He got disqualified in most swim meets (for a turn thing I still can’t understand) and had slow times, but I really don’t care. I tell my kids when they go out for sports, I don’t care if you are first or last, I don’t care what your time is, or if you get a million ribbons that end up in a box. I care if you learn to be a safe swimmer, and a good friend on the sports team, that’s the only thing that matters. For the big, bad world of competition is right around the corner. Be a kid for now, be brave and try hard things that are new, and be kind.

My little Katie learned how to be so brave this year. As most people know she fell into a glass window and lacerated the entire front of her nose at choir camp this year. There has been stiches and vomiting and lots of blood. There were months of dressing changes and tears and nightmares about the stiches and falling again. It was bad times. We are on our third surgeon, and through a very weird twist of fate, I met a surgeon who is changing her life. I take her in once a month for laser therapy that is reshaping a scar that is in the middle of her face, a scar I feared would never fade. She will go for six months of therapy, and it is changing the scar and changing her life. We talked HARD about being brave since the accident. But the thing I am MOST proud of for Katie this year, is not the good grades, or kicking a soccer ball or learning how to pick herself up again after the accident, it is something she did Christmas Eve.  We had dinner at our favorite Mexican Restaurant with friends that have become family when Katie tapped me on the shoulder. There was a lady behind us eating all alone on Christmas Eve, and looking sad. Out of everything in the restaurant that Christmas Eve, talks of stockings and Santa Claus, she noticed there was someone in need. I found the waiter and paid for the strangers bill, I wrote on the check, “Merry Christmas, you are cared for!” Katie noticed when someone needed love on Christmas. That’s what I want my children to do.

The most crushing piece of 2014 came when my parents got divorced after 42 years of marriage. It was time for my mom to go. It was just time. So, out I got her, and everything came tumbling down and  to a screeching halt, and life is starting over when it should be slowing down. Time to be braver than ever.

No matter how hard this year was, there was so, so much love

There was love when:

-We came home on Christmas Eve and our friends decorated our front walk with a luminary with Christopher’s name on it. I fell to my knees and cried. It was the most beautiful thing to see on Christmas. I have begged people to remember him, and to see his name lit up on Christmas, was a heavenly blessing.

There was love when:

-We had surgery and insisted on NO food, and people dropped off food (which I really did need), and friends watched our children. The nurses in the Operating Room were all old colleagues that held me with love as I cried, because I was so, so, scared of having someone operate on my spine and as usual my heart holding out again.

There was love when:

-My mom had surgery in July. As I waited in the waiting room, a stranger, who I could tell didn’t have much money, brought me a cookie and put it in my lap. I looked up at him and he said “You just looked like you needed a cookie”, and walked away. It was a good cookie.

There was love when:

-Katie fell and had friends that made handmade cards, and cakes and brought her dolls. Such kindness by so many people.

There was love when:

-We went to Blacksburg. Twice. Tech had a horrible season, but who cares? It’s really all about the oldest, dearest of friends for 20 years, and the tailgate, and the orange and Maroon sky (and the cheap Blacksburg beer). It’s a tiny piece of heaven, to just be there and breathe in the air.

There was love when:

-Someone left a bottle of wine on my front door.

There was love when:

-We went to Disney in December and I got to lead the grief part of the MPS conference, because for just a few hours in time, people felt a little less alone.

As we go into 2015, the thing I am most excited about is turning 40. I spent my 30th birthday crying in a cemetery, having just picked our family plot a year earlier at the age of 28.  I was on my hands and knees, with a tiny sick infant in a car carrier I was holding, I had no idea what the future would bring.

When you grow up with a heart condition and a surgery to fix it so rare you have to draw pictures to explain it to most doctors, than have a child with a terminal illness, you realize each birthday is a special gift. I don’t understand why people complain about birthdays. Another year to love, another year to see children grow; bring it on 40’s, I know it will be the best years yet. At my 6 month tune up with my cardiologist in October he shook his head and said “I don’t understand, you are better now than you were ten years ago, I don’t understand it,” it’s a pretty good feeling.

So 2014 was not the best year, but it could have been worse. Things can always be worse. You learn that when you lose a child, a bad day, isn’t such a bad day, you never say never.  It was a year where we realized how strong and brave we could be, I knew I was strong before, but I feel like Wonder Women who moved mountains this year. But love, that’s what it really came down to.  You keep smiling, you wear cute shoes, and you keep happiness in your heart, no matter how hard it is.  At the end of the day, or the year, you have to look for the love, because as my favorite author say, “Love Wins.”

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