A good day for the gals

M has had a great spring so far, and she has just been thriving and slaying, and all of the young sayings.  We opted out of soccer this season and the time soccer would have taken up was quickly refilled by other activities.  Since the beginning of the school year she has participated in an after school club called "Battle of the Books", through the year teams from schools across the county read 12 selected books and then meet to test their knowledge of the books.  Recently she participated in a scrimmage with another school and her team won!  I got to go to and it was so much fun to see her in action and see how she engaged with her team.  Then yesterday her team participated in a county wide competition with 10 other schools...and her team won!    

Yesterday, while she was at her competition, I was at an all in person manager meeting for my organization.  The first in three years.  I was a little nervous going into it, as I've only shared my health journey with my teammates and a few others, and I anticipated a lot of questions (out of care) when people saw me in person, full length and with a cane..!  I was also asked to present at the meeting so I knew I would need a lot of extroverted energy.  Early in the meeting someone touched on navigating personal and professional boundaries, so most did not ask me directly about the cane.  Truly, in many ways I am thankful for using a cane when I need to as I can still do all of the things I want or need to do, so I don't have any shame in that.  But I knew I would be standing for 10 minutes and I did have some anxiety about that...what if the cane wasn't enough and I needed to sit, what if I had to go to the bathroom, what if I just felt off.  Thankfully none of those things happened, but I was nervous about speaking in front of 60 some people for the first time in three years, and my voice was shaky despite the confidence I had in what I was speaking about.  But I got through it and you can see me (and my cane) and many of the friendly faces of CRi here.  I also created a video that was shared at the end to capture the last year from a clinical perspective.  As much as I like working remotely, it was great to be with people again and worth spending that extroverted energy.  CRi is a good place to be.

I then raced home as M had her choir and ukulele showcase that night!  Just like my meeting this was the first school performance in three years!  It was nice to see her classmates and their families, and the kids did a great job playing the ukulele and singing.  Teachers deserve all of the finest things, all of the kindness in the world and all of the highest praises.  They put together a thoughtful and heart warming program.  M took it all very seriously, but once she spotted us in the audience we saw a wee smile.  

Today she participated in a county wide fun run that she qualified for and got second place for her group,  so she just keeps slaying/thriving/living life to the fullest!  When she came down to breakfast in her running gear she looked just like her Auntie which made us smile.  

Heart is full.

The Beginning

Today is my birthday, and my Mom's was just a few days ago so while we were together this weekend I asked her a few questions around her pregnancy and my eventual diagnosis.  

So in my best Sophia Petrillo voice "Picture it...Germany 197#...."

But really it started in Texas in 197#.  A young couple just returning to the States from four years in Ghana had a TDY in Texas and discovered they were expecting a child.  At this point in time ultrasounds were not widely available for prenatal visits, so my parents were unaware of my sex or any medical diagnoses prior to my birth.  My Mom's prenatal care began in Texas, continued in Bonn, and lastly my delivery in another city in Germany.  Her pregnancy was fairly typical, although she was quite sick for the first five months.  

Also at this point in time individuals with disabilities were fighting for their rights to live independent lives, and the advocacy group LPA had been around for about 20 years.  Both of these movements may have been outside of one's peripheral if you were not immediately impacted by them.  Neither of my parents had an exposure or relationship to an individual with dwarfism prior to me apart from perhaps television or movies.  

My parents settled into their life in Bonn and prepared for their baby to be.  Some of their friends from other posts were also posted in Bonn at the same time and it was a great place to be.  However to give birth you had to go to a different city and my Mom went expecting to be there two weeks which ended up being four.  I was very late arriving and she spent her days eating malted milk balls and watching delayed American television.  My Dad visited on the weekends and on the last weekend he got back to Bonn and received a message my Mom went into labor.  He turned right back around and supported my Mom through 15 hours of labor, preeclampsia, and then a caesarean section.  

They were thrilled, weary, tired new parents.

The next day a nurse suggested that something about my physical appearance was off, and suggested cretinism.  Again, at this point all of the terms for being short in stature may have been combined, antiquated and unknown.  A few weeks later they went to a geneticist and I was officially diagnosed with achondroplasia.  Naturally, my parents grieved the diagnosis but also knew they were going to do everything they could to help me live a full and independent life.  Communicating my diagnosis and receiving others responses was also a challenge.

Of course, my Aunt L was part of this process, and as my parents learned about achondroplasia, she was finding the doctors that care for achondroplasia in the States.  Imagine doing that type of research before the internet!  But she did, and she found Johns Hopkins, where I would receive the same diagnosis and also meet two of my best friends.  That story is to come...because it is magic.

3 to NYC

The first time I went to NYC I was in high school and went with my parents the week of Thanksgiving.  We saw Guys and Dolls with the legendary Faith Prince and Nathan Lane, we watched the ice skating at Rockefeller Plaza, we had our Thanksgiving dinner in Chinatown, and we even saw Jay Leno and a young George Clooney exiting The Tonight Show.  And of course we watched the Macy's Day parade - in person!  Being in that crowded of a setting I couldn't see anything, so we found a hand rail to a basement and I stood on top of it so I could see with my Dad tightly holding on to me.  That was the last trip I had to NYC with my Dad until recently.  

Once I had the appointment in NYC it was figuring out the best way to get there.  As many times as I've been to the city, I had only travelled a few times alone, and those few times I always had a friend waiting on the other side.  So I was a little anxious about making the trip by myself and making it to the appointment on time.  The appointment was at 12:30 and the train takes about 3 and a half hours which didn't leave me a lot of time so I was planning on going up the day before then coming back after my appointment.  Then one day while I was at my parents we were talking about it and my Dad said he would go with me.  Now my Dad has spent most of his left travelling all around the world, but I'm pretty sure he had not left the state of Virginia in the past ten years.  To say I was surprised is an understatement, but I was also relieved to have someone come with me.  Then I thought may as well bring M and make the best of it.  

And that we did!  I wasn't sure what was to come, so I wanted to make this a fun memory for M, but also an easy trip.  This was also her first trip with my Dad!  So I got to planning!

First, I got train tickets.  I'll probably do a separate or continuing post(s) on travelling with a disability, but overall the train worked out well for us.  Although we barely made it, we enjoyed the ride and seeing the cities we passed through.  M enjoyed the ability to spread out and get out of her seat when needed.  Then I booked our hotel, and picked a hotel that was central in location and a brand I knew.  I also wanted a hotel with an onsite restaurant to minimize going out for meals.

The whole morning of the trip I had so much anxiety, anxiety about travelling, and anxiety about the appointment.  I was determined not to let my anxiety ruin anything and B gave me a little pep talk before I got in the car.  

Once we got to the city, we headed straight for the hotel, we only brought backpacks with us, but I was ready to be free of it.  I prayed for an early check in and it was answered.   The hotel was beautiful, we were blown away by the floor to ceiling windows, and M liked to sit against the windows looking out at everything below.  From our floor we had a view of the Empire State Building so we took a look each time we passed the window.  

I was starving by that point and on the way up we debated Chinese or pizza.  It was interesting as I looked up places to eat I found many restaurants are now counter shops, with no place to sit and eat, and riding around we saw lots of restaurants that still had outdoor tents.  We found a restaurant, M wanted soup dumplings, Dad wanted noodles, and I wanted everything.  All of it was wonderful and we had so much leftover which broke my heart as we had nowhere to keep it.  

DC has great museums, so I gave M an option to pick one of the more unusual "only in New York" museums to go to.  She picked The Museum of Ice Cream.  The museum wasn't so much a museum, but an indoor playground with ice cream and photo opportunities.  Even with the timed entry the museum was busy and it was hard to enjoy the "experiences", at least for me, M had a blast.  Throughout the museum they give you ice cream and after two servings my Dad and I were done, however M enjoyed it all.  I think the highlights of the museum are the three story slide and the sprinkle pool, I didn't do either, but it was fun to watch M.  

After the museum we headed back to the hotel and we lucked out as it was happy hour (and free!) and we found a perfect spot in a corner to sit and people watch.  It was the perfect place to unwind after all of the stimulation of the Museum of Ice Cream.  The hotel had three restaurants; Skirt Steak, L'Amico, and The Vine.  Skirt Steak already had a line down the block, L'Amico had an hour wait, but we were able to walk right into The Vine.  It was fantastic and it checked all of our boxes, I had a chopped salad, M had salmon, and Dad had steak tartare.  The restaurant also had a secret speakeasy at the back of it, so it was fun watching the people going in and out of it.  It was at dinner where my Dad started to think that he could live in New York, have an apartment, and walk to the same restaurant every day and eat the same thing.  I will never ever let him forget that he said that.  

The Vine was so good we returned for breakfast and spent the morning relaxing in the hotel room before the appointment.  I asked the Uber I booked to take us to the hospital to go through Times Square and he gave us a great tour all from the comfort of his car.  We even got to see the famous Macy's (where B once dropped a pizza inside of it).

I wrote about the appointment separately, and after it we headed back to the train station and back to DC.  I know someone who claims to get anxiety anytime they leave the Chesapeake Bay watershed, and I think my Dad's boundaries are much smaller, so his relief was visible once we got off of 66.

It was a great trip and just like on my first trip to NYC, my Dad was there to keep me propped up.  We did a lot of walking, and when it became hard he took my backpack.  Or when it was hard climbing up the steps to the train or getting in the back of an Uber he gave me support or a boost.  Despite the purpose of the trip, I'm so glad we got to do it together and so thankful for his support.  And that M got to experience an adventure with her Papa!  Perhaps it will renew his sense of adventure and he'll expand his boundaries.  I have to go back for a follow up so we shall see :)