Thursday, February 13, 2014

Embracing the Moment

Earlier in the week, I visited my friendly hematologist. He took 21 vials of blood two weeks ago, and told me he was sure he'd have some sort of answer for me on Tuesday.

Now I had been to the neurologist at the beginning of the month, and wasn't terribly thrilled when she confirmed my diagnosis, and told me it was most likely a combination of Essential Tremor and young-onset Parkinson's Disease.  Having the thoughts in your head and comments from doctors is COMPLETELY DIFFERENT than hearing a neurologist say "you have a problem..."


So, I wasn't terribly thrilled to go see another specialist. To be honest, I wanted to get answers, and I have been feeling disheartened because it has taken five years to get the answers. But I also felt more comfortable with some things just being a "maybe." Sometimes getting results means I finally have to deal. I am a fairly well-adjusted person (in my opinion), but I also feel like I've dealt with more than my share lately.

So, I sat in the exam room and waited for him to arrive. It didn't help that the appointment took two hours, so I felt like I was waiting in Purgatory.  When he finally walked in, I could already tell he had some thoughts in his head. He had something to share, and he didn't wait too long before starting into his speech...

"We ran TONS of tests on your blood, because we needed answers. We did get a POSITIVE back on one of our tests for clotting disorders.  As you know, your blood clots WAY TOO EASILY, and that's a big problem. Now we know why.  You have Factor V Leiden Thrombophilia."

I just blinked at him. I remembered how they had taken all of those vials, and how it took FOREVER because my blood was clotting in the collection tubing. I remember looking at the tubing and wondering how on earth that could even happen.

He told me that it was with me since birth, but we probably didn't pay enough attention to it until now. He said this is what was causing my TIAs, and was the reason I had pregnancy complications and two miscarriages. He said that honestly he was surprised I was able to have two healthy children, even with the complications that came along with them.

I asked him what I needed to do, because I obviously didn't want my blood to keep clotting up, and causing major issues like strokes, pulmonary embolisms, etc.

He told me the problem was that he didn't feel comfortable putting me on potent blood thinners yet, because I have accumulated quite a few minor injuries from my clumsiness and shaking (remember last post?). He pointed to the cuts and scrapes I had, and told me I would be in big trouble if I had super-thin blood while slamming into everything and cutting body parts. BUT THEY WERE KIDS SCISSORS!!!

So, right now he wants to try a "wait and see" approach. He'd like to wait for the signs of a clotting problem, then make that the beginning of treatment. I can understand where he's coming from, but I am also a bit nervous about that. He also wants me to get the tremor medication worked out, because he feels more confident with trying blood thinners once I am not a risk to myself... LOL

So, I came home from that appointment TIRED. Beyond all of that info, my blood pressure has been dipping dangerously low (114/40), and it has been making me feel dizzy and just miserable. It was my intention to rest and feel better for Wednesday.  I had heard a rumor that snow might be coming to the area, but I didn't believe that would happen anytime soon. It just doesn't happen here anymore.

Well, the kids were off on Wednesday (and my mom was home as well). I was excited, because we had the opportunity to play games, watch cartoons, play dolls, run around outside before the snow, make homemade pizza for lunch, and snuggle. I was excited we got a day together, and I really needed that after such a tiring day on Tuesday. I even got a pretty decent nap, so that made for a good rest of the evening.

In the evening hours, the snow started to fall. My dream was coming true!! I know it sounds cheezy, but there's NOTHING better to me than to watch snow fall. I like the peace and quiet that happens when I am watching the snow drift. I can sit and watch it at a window for hours, which is probably disturbing to most.  After all of our excitement from playing all day, both kids were asleep before 7pm. I tiptoed into Alex's room, and told him to put on his robe and boots. He popped his little head up and wondered what was going on. I told him I had a surprise for him.

Something I had been thinking about, as all of these issues have been happening; probably the scariest thing for me to deal with is the idea that I won't be able to do everything I want to do with the children.  I feel bad sometimes that they have never had a mother that's 100% healthy all the time, and really that's the only parent that is around. They have grown up to be compassionate creatures, and we still have fun, but I sometimes wish I had the ability to do so much more.

So, when the snow started falling, I decided we needed to embrace the moment. I took Alex outside, and we stood for ten minutes, feeling the snow fall on our faces, and catching flakes. There was such a peaceful stillness in the air, and we loved watching the snow falling under the security light on the street. I even turned on the flood lights so we could watch the snow fall inside the house, on the staircase.  Here's a picture of my snow buddy:

We headed to bed, and by the time I fell asleep we had about two inches on the ground. I will admit that I did sneak back outside by myself later, to absorb that feeling of quiet again. :-)

This morning, I heard my bedroom door FLY open as Alex burst in to announce that it had SNOWED BIG TIME. He was SOOOOOO excited at the winter wonderland outside, and he told me how it looked from his bedroom window, from the balcony window, and from a downstairs window. Apparently angle is everything when viewing the snow...

So, even though I hadn't been feeling too great, I decided we needed to embrace this moment.  Me and the kids were going to make snow angels! Yes, a person with recent ACL surgery and a broken leg, along with various pain and neuromuscular issues thinks it is a good idea to make snow angels.

Here we are (thanks Mom for taking the pic!):

I thought about the numerous reasons why the snow angels may not be a good idea, but then I thought of one really good reason why this needed to happen: It hasn't snowed in a while, and I don't know when this will happen again. The kids need to have a memory of me playing in the snow with them, in case I am not able to do things like this later.

So, we threw piles of snow "dust" (the snow wouldn't pack, so it looked like glitter glistening against the early morning sunlight).  They found big hunks of snow to eat, and took turns sliding down the slide into a pile of snow. I'm glad they had that opportunity to get out there with me, and they were grateful for the hot chocolate when we headed back inside! :-)

These past few weeks have been adjusting to a new reality. Where there have been suspicions and questions for some time about what my future might hold, now I am faced with a bit more certainty about the uncertainty, if that makes any sense. It was fun to be able to take some time to enjoy my little ones, and to make some memories that will serve us well as years go by.

None of us really knows what the future holds. I try to keep in perspective the fact that there have been so many rough things that have happened to me so far, and I've survived them all. But I also know that there's only so many battles one person can handle. So, I take comfort in my good friends that reach out to me, and my family that is there to catch me when I stumble.  And I thank God every day for a little voice that tells me in the morning "don't you know that you are the best mommy a girl could ever have?"  Some days I don't feel it, and I wonder what the future holds; in those little eyes though, it seems like everything is working out just fine. 


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