FAQs

Thursday, December 17, 2015

Dr. Rowe: The Big Fundraising Reveal + A Few Words From Him

High Five


We made our now annual trip to Hopkins this week to see Dr. Rowe. I started out the appointment by revealing the fundraising total to Dr. Rowe.

As always, I had an amazing two hour (!!!) appointment with Dr. Rowe that filled me with great hope. We have new things to try and new choices. I'll do my best to blog soon about the appointment (I know I have been terrible about keeping up with blogging lately!)


I Think He's Happy :)


Thanks to all of you who so generously donated, we raised enough money to fund Dr. Rowe with three research assistants over the summer (or in whatever time period he wants to hire them).

As you can see, he's very happy with the results of the fundraiser!


Time for the Big Reveal!


 I loaded up a little briefcase and told him he might be needing the items inside of it: three clipboards (one for each research assistant he can now hire) and a 'check' with the grand total.

The grand total?

$8,266


Receiving the 'Check'


Here is a little note from Dr. Rowe himself that he wrote to me after the appointment:


It was great to see you yesterday, and to document the progress in the last year. I so appreciate the efforts you have made to support my clinic. This is just fantastic. Among other things, this kind of fund raising helps the Department of Pediatrics know how much the work I do means to others, and keeps the wolves from my door, so to speak. All very important, along with being able to hire some really sharp and creative students each summer. I have loved having them around.



Thank you all again for your amazing support of my journey and of Dr. Rowe and his dedication to patients like myself. 

For anyone who would still like to donate, the fundraising page remains open until the end of the year. Click here to donate.

Blessings,

Emily


Monday, December 07, 2015

Love and Illness: One Year Anniversary

Us: On My Birthday at One of Our Favorite Parks

Happy One Year Anniversary Baby!

It's difficult to believe that one year ago today--on December 8th, 2014--Kiernan and I went on our first date at a cozy local bar with a fireplace and chatted easily for 2 1/2 hours. We had met just a few days earlier on November 30th. For our next date, we went to our favorite Thai and Sushi restaurant in town. 

This evening, we plan to return to our favorite restaurant and possibly, if energy allows, make a trip down memory lane to the cozy little bar and sit by the fireplace and have a drink. 

October 10, 2015

On our one year anniversary we find ourselves in a little different place than we expected to find ourselves. Having been out of the dating scene for so many years, I let my expectations for a perfectly linear relationship get in the way of what blending two adult lives can really look like.

We're not engaged right now. And we're not ready to be. And we're okay with that.




Instead, we found ourselves hitting a low point, facing our biggest challenges yet, and deciding that what is best for us is focusing on the journey that is us; focusing on right now; focusing not on what the future holds, but cherishing our hopes for it; and most of all focusing on making ourselves the best partners we can be for each other.

Life is rarely, if ever, linear. And Kiernan's steadiness is what keeps me together when I freak out. 

We've found this reset to be a period of renewal, and I've found myself falling in love with K all over again.




I have learned so much over this past year with Kiernan. I've learned that, while my illness certainly makes our relationship more difficult, challenging and unique when it comes to everything from sex to children to the activities in which we can engage in and share, it is not ultimately what causes us the most difficulty.

Instead, we struggle just like any couple does--with the same issues I hear all of my friends talk about or read about in articles. How do we be the best partner to each other? How do we communicate well? How do I learn to speak up with my needs?

This realization that, in so many ways, we are just like every other couple navigating a love relationship, helps me to see that love and illness are indeed possible. More than possible. Just a lot harder sometimes.




I find myself at this one year anniversary with Kiernan feeling grateful for the journey--all of it. The ups, the downs and the in-betweens. 

I am grateful to this man who shows me grace, patience, kindness, thoughtfulness, tenderness, humility and a willingness to work hard at making us the best we can be. 




Kiernan is what one calls 'a good person', which is the greatest compliment we can give someone. He is also my favorite funny person. And since sense of humor is a sign of intelligence, we can now declare that Kiernan is way smarter than I am. :) 


Pushing Me in the Rolls


He continues to journey with me through this illness, which has thrown me a major curveball the past six weeks. My illness affects our relationship, but it does not define it. I am chronically ill, but I am not my illness. Kiernan plays the role of caregiver sometimes, but it is not his only role. He continues to teach me what is possible.


Us

I hope that my journey with this man continues for a very, very long time.

Thank you, Kiernan, for the gift of this year together with you.

 I love you very much, babe.

Emily

Sunday, December 06, 2015

Monday Dog Blog: Long Walks

Little T and Big G Taking a Break


We were super excited to get out for a nice long walk when we got home from Chicago. Look at all of that green space around here! :)

Mom takes us on walks as often as she can.

On this particular day, we went on a super long walk and we had to take a nice little break on a park bench.

The benches are there for dogs too, right?

Happy Monday! Happy Hanukkah!

Blessings,

Tovah Rose and Gershwin