Thursday, December 13, 2012

It's Beginning to Look A Lot Like Christmas

Last year, our Christmas tree lights didn't go quite as planned. The bottom portion of our tree just didn't light up. This year we bought all new lights, just not enough. So after a second trip to Home Depot we officially have lights that work ALL over the tree. Quite an exciting feat around here.

For whatever reason, maybe because it was like 90 degrees outside when we decorated the tree, we didn't whip out the camera. However, Neil managed to catch a few shots from his iphone.

Will was very intent on helping, more than last year (if that's even possible). He was very serious about getting the ornaments on the tree and making sure that his two favorite's, in order - a merry-go-round and a Santa bell that jingles - were at his eye level.

Final touches
I'm also VERY happy to report that we will get to see every single person on both sides of our family on Christmas Day. I don't know why this makes me so excited, but it really does.
Will helped me order some items online this weekend, one in particular for our new cousin, Baby Sophia (Neil's brother and his wife). He has asked me to pull up the photo of the gift multiple times and he is soooo excited to have Baby Sophia come over. This kid needs a sibling :-)

Wednesday, December 12, 2012

A Professional Change

I don't often blog about my professional life, my career if you will. A lot has changed for me at work in the past year.

I have always worked at a public relations agency. I love what I do, it's fun, different and something is always blowing up - literally and figuratively. A long-time fear I think of many new moms is that their career will suffer or change after you have kids.

Usually it does change, but it's not all that bad. You get a new perspective on life when you have a baby. I know I did.

My perspective changed even more when Will was 15 months old and we were told to start therapy and to figure out what was medically wrong with him. Luckily, I had worked with the same team for many many years and they worked with me on a lot of it. Then, we found out what was going on with Will and while I was falling apart, my team helped me hold it together at least professionally.

Sometimes going to the office was a welcome relief to my day. I could put aside all my fears, worries and sadness and just focus on doing good work. Then, it just got to be too much. My manager helped me to work out a new work schedule where I reduced my hours and started working 10 a.m. - 4 p.m.

That was a huge live saving change for us.

Fast forward a few months and out of the blue I had an old client email me to see if I knew of any freelance pr consultants, or would I possibly be interested in the job? It was something I knew I had to consider, plus I really like the people and the client. It's very rare to have a client fall from the sky. So, we ran the numbers and I resigned in September.

This wasn't a typical resignation I suppose. I cried, I wasn't unhappy with my job or the people I worked with. These people have been a huge support system and part of my life for nearly nine years, but it was the right thing for me and for my employer.

So, since October 1, I have been self employed, working from home, working at my new clients office and actually, working for my old employer! They hired me as a consultant for a few projects. It's been so busy that I haven't even had time to really tell anyone. Just in passing or as I email/talk with someone I haven't talked to in a while.

The first two weeks were really hard. I was still carrying 10+ years worth of "panic" that I was going to miss something. Then the panic changed to "I can't screw this up" and now I have what I would call, appropriate panic to do a good job for everyone.

It's changed the way I think about life, work/life balance and what I can do for Will and our family. I wouldn't have been able to do this without Neil's support. I don't have to count up my vacation days and pray that we won't end up in the hospital eating up days and days of time that I should be able to use to do stuff like take Will to have breakfast with Santa or go on an actual vacation!

One day, I even got a mani/pedi during my self-appointed lunch hour. I felt guilty about it, but then I realized that doing that every once in a while is actually healthy for me. (or so I told myself). :-)

My logo, thanks to the very talented Jimmy Egeland.

Monday, December 10, 2012


I guess it's that time of year. I've realized I've been hibernating - only doing the bare minimum of things required to keep Will happy.

We started the SubQ IVG in November, the weekend before Thanksgiving we found out that our second attempt at getting pregnant did not work. Then all the Thanksgiving festivities happened. Neil and I decided to go on an impromptu ski trip, so we went. It wasn't what we had hoped, but it was still time off. We got back this past week and I've enjoyed every minute of being home with Will.

I guess the past month has just been a heavy month.

The SubQ IVG stuff is a huge win for Will, but it's very stressful to get all the equipment, tubes, pump and meds ready, then jab a needle into Will and then watch him sit there for two hours while the IVG slowly drips into his body, forming a large lump of liquid under his skin. This is a weekly, ongoing procedure. This last time was especially unpleasant as it was the first time he complained during the process.

We try to make it a party - order pizza, have a family member or adult friend come over, have a picnic in the living room, watch a special movie. But that only gets you so far. My brave little boy.

I haven't felt thankful, everyone kept talking all month about how thankful they are... I know I am thankful for so much. I'm just so frustrated with this pregnancy thing. We are using an egg donor since it's my eggs that carry the Leigh's mutation. We're out of eggs from donor #1 and our doctor recommended starting with a new donor, a proven donor. So it feels like we are exactly back to square one, exactly where we were a year ago. It's hard to believe I've been jabbing needles, patches and pills in my body for a year and I don't have anything to show for it (the bruises are gone now) :-)

Our vacation was good, albeit some heavy conversations and bad weather all but one day. I think we were both just relieved to be home and with Will.


I know I need to do more for and with Will right now. We are in a peak time right now. We made a choice not to take Will out to a lot of places this winter eg. birthday parties, malls, large crowds.... Just want to give our bud a chance at health this winter season, but still do some fun stuff. It's maybe one of the hardest balances to strike.

I actually got my act together and started making Christmas gift lists and budget. Ordered a bunch of stuff online, still have quite a ways to go, but at least it's finally started.

At least I have recognized I'm in a hibernating funk and that it would be a good thing to snap out of it. That will likely have to just happen this week, as I know life is more fun on the other side.

Merry Christmas, Happy Hanukkah, Happy Holidays - whatever you celebrate, or don't, enjoy this time of year. I love seeing the magic of all of it through Will's eyes. I don't know if I'll ever forget the day we went to Target and we were rounding the corner into the Christmas section. Will's eyes filled with amazement to see all the lights, trees, ornaments etc. He was chatting non-stop about it. We walked up and down all the aisles. He kept asking who did all this, I said the people that work here. He told me (very authoritatively), No mommy, it was the elves from the north pole. Seeing the Christmas magic through his eyes, his pure little heart, is really awesome.

Sunday, December 9, 2012

Thanksgiving 2012

(A tad late here...)

We ate, we played, we gave thanks....

The "traditional" cousins picture in front of the turkey attempt... Had to post the series of photos, just too funny not to.

Adding in Baby Sam, my cousin's new little baby boy!

Things quickly falling apart.

Juice after playing hard outside

Dee Dee helping Will put on his special art project from school.

Sitting at the "big kids" table this year.

Ok, this necklace thing is not working for me lady....

Relaxing on the couch post-turkey with Papa
Gobble gobble!

Friday, December 7, 2012

Leigh's Clinic!

Some pretty exciting news from Will's Mito doctor!
"We are happy to announce that the UT Mitochondrial Center of Excellence will be opening the first Leigh syndrome clinic in January 2013. This clinic will be held on the second Friday of every month and will be dedicated to the care and research of patients diagnosed with or suspected of having Leigh syndrome."
This is incredibly awesome news for us as Will has Leigh's disease. In no way am I "downgrading" other mito diseases - many of them are fatal - but Leigh's is as well. To have a time to be in the clinic with only other Leigh's patients is going to be awesome.
It's a good opportunity for the doctor to find commonalities, issues and perhaps even better treatment options if all the patients come in during the same time period.
Happy Friday!
Cousin Carson and Will "going to work" with Papa's ties on