The Whole Story

I got some bittersweet news the other day. I've been holding onto this story for awhile. I wasn't quite sure that I wanted the world to know my "stuff". More importantly, I want to go on living my life as usual, as opposed to "someone with..."

Well, let me back up and give you the whole story....

The day after I had Lillian, and while still in the hospital, I had what we are calling "an episode". I was laying in the hospital bed with a room full of visitors including friends and family (10 people to be exact), and I was trying to nurse Lillian. As I was holding her, my fingers started to feel numb. I thought "hmm, this is weird, I must have pinched a nerve or something". Then, my whole hand went numb. I immediately called Chris over to take the baby as I felt the numbness move up my arm. I still thought that it might have something to do with an IV that was in that arm earlier in the day. The numbness eventually moved through my arm into my shoulder and head, and down my torso and legs...all the way to my toes. My entire right side of my body went numb. When I started to talk, I could feel the right side of my mouth droopping. I pushed the button to call the nurse, and I could tell by the look on her face that she was concerned. She went to call the resident on duty. Then, as quickly as it started, I began to regain feeling in my fingers..then my hands and arms and so on. The entire "episode" lasted less than 5 minutes, but was pretty scary.

Over the course of the next day, I went through a few tests (CT Scan, EKG, EEG, Ultrasound, and MRI). The results all seemed indicative of MS (Multiple Sclerosis). So, while we should have been celebrating and taking Lillian home, instead, we had a bit of a damper put on our day.

Throughout this time, I was also telling everyone and reminding them of my family history with CADASIL.

As we left the hospital with the news that I probably had MS, I scheduled a follow up visit to the neurologist a few weeks later. The result of the follow up visit left me feeling a little discouraged, as the Dr. was pretty certain that I had MS and were ready to start my daily doses of protein shots. I once again reminded them of my family and CADASIL. I received a call a couple of days later requesting a genetic blood test and a Lumbar Puncture (spinal tap (which was not at all as painful as I expected)). The diagnosis was still MS, but the Dr's wanted to be sure to rule out everything.

Throughout this all, Chris and I decided to tell only some friends and immediate family. We did not want it to take over our lives, and we definitely did not want people always asking questions (especially when we didn't have answers). If you were not one of the people that originally heard the news, then I'm sorry...we were just attempting to rid our lives of any undue stress.

So, fast forward to December 8 (about 4 1/2 months after my initial "episode"), and I finally had another meeting with my Dr. The good news is that I don't have MS. The bad news is that I do have CADASIL.

Unfortunately, CADASIL does not have a "cure". I can potentially lower my risk by eliminating common risk factors in strokes, such as high blood pressure, high cholesterol and diabetes. I also have the pleasure of taking a baby aspirin everyday. I am choosing the grape flavor;)

While I was prepared for CADASIL, and am relieved that I don't have MS, I am still scared. I'm not so much scared for myself, but for my sweet, perfect little girls who now have a 50% chance of having CADASIL.

Well, I wanted to put this out there. I wanted it to be known, but I don't want to talk about it all of the time. This is one part of me, but does not define me.

Top Ten

After being a mother of 2, I've had some time to think and evaluate my job as a mom. So...I've developed my own Top 10 list of how you know that you are a mom....

10.) When your child looks like they might puke, you do not run away...instead, you form your hands into a cup, and shove them under your kids chin.

9.) You use your pinky finger to pick your childs' nose.

8.) You stop double checking your hair and makeup in the mirror before leaving the house, and instead, double check your back...to make sure there is no spit up running down.

7.) You wake up in the middle of the night, sleeping curled in a ball on the bottom of the bed, with no pillow...because your child is sleeping sideways on your pillow, and the bottom of the bed is the safest place NOT to get kicked.

6.) You switch purses, not to match your outfit, but instead to accomodate multiple diapers, juice boxes and toys.

5.) You have over 5 layers of nail polish on, because the only way your child would sit on the potty long enough to go #2, was to allow her to paint your nails...over and over and over.

4.) You've read more pages of "Good Night Moon", "Olivia", and "Go Dog Go" than you've read of any grown up magazines or books in the past year. (Hello...I have "The Lost Symbol", and "The Book Thief" sitting unread on the end tables).

3.) Instead of contemplating politics, world issues, or the meaning of life...instead you find yourself thinking..."why doesn't Little Bear wear pants?", or "Why is Dora's map so dang snotty?"..."Where the heck are Max and Ruby's parents?"

2.) You realize at 5pm that the only thing you've eaten all day was a spoonful of leftover mac and cheese and a half eaten apple slice with hair on it.....yet you still gain weight.

1.) You drive home alone in the car, only to realize that you were listening to your kid's CD the whole freaking way...AND singing along to 5 Little Monkeys...ARGHHH!

What would you add?


I love being a Mom. The End.

National Coming Out Day

As some of you know, today is National Coming Out Day, and I am feeling compelled to come out in my own way. I want to come out as a full fledged, Ally and Advocate for Lesbian, Gay, Bisexual and Transgendered individuals.

While I may not be gay, I believe that it is just as much my job to fight for equal rights for individuals and the individuals themselves. Some of the people closest to me are LGBT, and I love them, and I beleive that the overall world would be a better place if we were not only accepting, but celebratory about about all people. I feel that LGBT individuals not only have a place in our world, but make the world a better place by existing in it and being open and happy with themselves...so, here I am being happy with them.

Please know that while I use the term "coming out" as an Ally, I do not want to diminish the real meaning of "coming out", or make light of the importance of this day.

I bet that my audience of readers is split in regards to what they are thinking right now....

1/2 of you are probably thinking...well...duh Michele, we knew it all along, this is nothing new. You've seen me wear my "There are two types of women, Lesbians and those who wish they were" or "Gay...fine by me" shirts, or seen the Rainbow "Ally" Button, or "Safe Harbor" Sticker in my office. Anyways..to those that already know me in this capacity...welcome back...you can stop reading now!

For the other half of my friends, we may have never talked about this before. You may have never seen my shirts, stickers or buttons. We may not have talked since high school (when honestly...my views were quite different than what they are now).

So, why do I feel the need to "come out" as an Ally? Well, I think it's important for people to know where I stand. I think that as a straight person, I have lots of rights and priviledges that my lesbian and gay friends do not. The number one priviledge that I have is to sit quietly by, and choose to either care or not care about equal rights. My LGBT friends do not have that choice. Rights are removed from them everyday...from walking safely down the street ...to the right to marry. It's sad to me that people work so diligently to shut others' out...and remove their right to live the same way as others.

I hope that I live my life in a way that opens doors for others as opposed to closing doors. I pray that Chris and I are able to raise Avery and Lillian to be a caring, loving, open individuals. I want this next generation of children to be able to erase hate from the world, and fill it with child-like innocence and love. I know that if one or both of my girls come to me someday and tells me that she is lesbian, gay, bi, trans, or questioning...that I will open my arms to her, love her even more for her strength and continue to work to make the world a better place for her and everyone else.

Well, with that said...

Happy National Coming Out Day everyone!

MLDB