Valentine's Day: Care

 Dear Jules,

I have never been a huge fan of Valentine's Day.  I don't like holidays that make people feel bad, that are exclusive, and that are manufactured to make money.  

This year, though, I received the most beautiful, unexpected gift.  You see, people often talk about parents of people with disabilities as "caregivers." You might see words like "burden," even, or hear about how hard it is.  

What you don't hear about enough is how much care we receive from you and, in this case, from your friends. We don't hear about what we all know: care is not a one-way street.  

Since today is Ash Wednesday, your school and your friends celebrated Valentine's Day yesterday.  There was the usual running around, trying to find something that 13-year-olds would actually like instead of cheesy cards with cartoon characters. There was the usual bringing-in-of-the-treat, one that is sweet but not too unhealthy.  There was, this year, a visit to the Down Syndrome Clinic at MUSC.

This was a ridiculously long visit: we got there at 9 a.m. and did not leave until 12:45.  And when we were leaving, you said "thank you, Mom."

"For what?" I asked, thoroughly confused.

"For taking me to the doctor. She is sweet."  

While this is undoubtedly a tribute to Dr. LaRosa and to the great work of the MUSC Down Syndrome Clinic, you specifically reached out to thank me for taking time out of a busy workday to take you.  Very few teenagers would have done that, and it made me feel cared for.

And it's not just you who cares for me.  You have gathered together a beautiful group of friends:

These girls have been true friends to you.  Addy, Rowan, and Saachi are your people, and you can be yourself around them.  I'm so blessed that you have them all in your life, and that they love you so much.  

And I'm blessed that they all also care for me. Whenever I see any of them, they come and give me a hug.  They make sure that I am okay, and that I feel cared for.

Yesterday, after the Down Syndrome clinic, we had therapy with Rowan, and she came out the door with a Valentine that she made...for me.  It was so unexpected that I thought it was a mistake, but she said it was, indeed, for me.

I couldn't figure out what it said, so I asked her.  

She said "Nice.  Talks with me.  Love you lots.  Hugs."

Honestly, y'all, it made me choke up.  It had been a long, long day with the appointment and with work, I had had a rough workweek before, and this was so unexpected, such a beautiful gift.  

Such care.

So this Valentine's Day, I want to celebrate these moments of care: care that we receive from others, care we show to others.  More than anything, this is what it means to live in relationship: to give and receive care.  Sometimes we give more than we get, but in the end, we all want to feel that we care and are cared-for.  

It might feel quotidian, like an everyday thing, but it is more real than Hallmark cards or cheesy romantic movies.  

So Julia, thank you for showing me so much care, every day of my life.  You are and always will be my Valentine.

Inclusion: The Good, the Bad, and the Ugly

 My dear Jules,

Life lately has been hard.  I know you love your school and your friends, but things are just getting really difficult, what with them not being willing or able to help you with anything that is medical.  I feel so bad for you when you have an accident; instead of having consideration for your feelings, people get frustrated at you and at us.  It is not your fault, and they should never make you feel bad. 

You do not deserve that.

So on Sunday, you got your period for the first time, and you brought pads to school.  You tried to put them on by yourself, but it is just difficult with the stupid wings (wish they didn't have these).  I was told, on the telephone (thank God) that they cannot help you with any of this, ever.  

We have a conference on Thursday about High School, and I just don't know what would be best for you. I am such a fan of inclusion and think this school has been so good for you, but I am sick and tired of them making you feel badly about things that are just, well, normal.  I wish you could get help in the bathroom if you needed it and/but could also be included.  Why is it so difficult to have both of these things at the same time?  

Do I need to give up on inclusion so that you can be comfortable with your body and your friends, and your learning too?  I really want you to be happy, but you are so easy-going that it's hard to know when you are not happy.  I don't want to go back to the self-contained classroom with mostly non-verbal kids, but the more I think about years and years of this, the more depressed I get.

If you ever read this after I'm gone, I just want you to know how much I love you, how hard I'm trying to do what's best for you.  If this is not it, then I'm very sorry.  

Hungary

 Dear Jules,

If you look back on this blog, you'll see our earlier trip to Hungary. So much has changed: people have grown up (like my Godson Balázs), others have died, and you are almost a teenager, but it has been so good for you to see and be embraced by family.  

More than anything, I'm so glad you've had this time to spend with Nagyi.  I'm so glad you have a good relationship with all of your grandparents, even with the one who lives so far away.  

This picture is from the Frog Pond, which used to be just a frog pond until they made it into an amazing park.  We spent lots of time at Nagyi's house, we walked around Debrecen, and we even went with her, and with my wonderful Godfather (Oreg) to the Lake Tisza Ecocenter.  

There were tons of people and lots of walking, but it was really nice to just spend time together with her. 

In addition, we got to do some other social things.  One of the first things we did was go to a concert.  I was going to go by myself with Jutka, my cousin, and her husband, but you demanded to come along.  So we sat down at a bar, got drinks for us and lemonade for you, and listened to the music.  You even danced a bit!

You demanded you wear a cute dress and have "cute" hair, and you were definitely the best dressed person there.

We also spent some time, just you and me, at the water park in Debrecen, which is really impressive.  As always, you loved it (I didn't get too many pictures because I was with you, but I hope you will remember the crazy slides and the fact that you jumped of a 1 meter ledge, with people cheering for you).

Next, we planned an outing to the zoo in Nyiregyháza, about an your away.  We went with Jutka and Robbi and also Gergö (Balu's brother), his girlfriend Moncsi, and our relative Éva, who brought her two grandchildren from England, Harmony and Cornel.  It was a lovely time.

Shortly thereafter, we went to Sarúd, on the river Tisza, where they have a wonderful entertainment center (and Robi has his boat!).  This was also one of your favorite experiences, and you especially enjoyed the new experience of relaxing in a jacuzzi after.

Oh, and you got to drive the boat!

In between these bigger outings, we had lunches and dinners with family members, one big one being at my Godparents' home:

And we explored Debrecen's many fountains and statues, and the beautiful flowers everywhere.

We ended our trip with a train visit to Budapest, where we got to spend some time with my godson Balu and his girlfriend Patti.  We went to an awesome Mexican restaurant (Patti's family is in Mexico) and then to Margaret Island:

I'm so happy with how our summer vacation turned out, Jules.  Before we left, you'd had a really scary medical thing happen, and you were so anxious, about everything.  The smile I saw on your face every day was so healing to me and, I hope, to you.  I leave you with this video of you running through the Debrecen fountain, hoping you will always have such peace and joy and love of life.  I love you so much, my girl.

England!

 Dear Jules,

I've been busy doing my research--looking at all my books--at different archives, which makes my heart happy.  I also went to my conference, and you got to have dinner with Dad and all of my colleagues.

During this time, you've been having so much fun with dad (well, as much fun as this rainy cold weather will permit!  I can't believe it's July).  

Dad has done an amazing job taking care of you, and I love seeing the big smile on your face.

Here you two are at Trafalgar Square ----->

And I think this one needs no introduction.  You were excited to see Big Ben! Also, you've been in denial about the weather, so you just wear what you want, which I love.

Dad also took you to the zoo, where you were really into these monkeys--

From London, we travelled to Brighton, where I researched in the Keep archive.  Thankfully, they were closed on Saturday and Sunday, so we got to play!

We ran down the water many times; this is an Orrery with depictions of various figures and ideas from Brighton's history.

The Brighton pier is really beautiful, even if it's absolutely crazy.  Yesterday we could barely move from the number of people here to enjoy their "summer" (64 degrees, cloudy, and windy).  

Because it was too cold, even you would not go in the water (you said it looked "weird"), so we went to an indoor pool with a water slide.  I tried to get a picture of you and dad, but they did not allow photography.  The British are much more private than we are in America, which is probably smart.  

We are still in Brighton, and then we go to London for one more day before we fly to Hungary to see Nagyi, something you've been looking forward to this entire trip.  The weather, I know, will be warmer and you will finally get to swim! 

Ireland Days 4 and 5- Donkey Sanctuary and Dublin

Dear Jules,

So it rains here in Ireland...a lot.  On our first day, we had about 30 minutes of rain, and everyone raved about it being a "perfect" day.  Yesterday and today have been what even they call rainy...torrential rain.  

So we have not gotten to do as much, but we have been enjoying Irish specialties.  I've tried a lot of different ciders (they are all great but my favorite is Orchard Thieves), and you really enjoyed the meat pie:

It's like the perfect food for you- beef, mashed potatoes, vegetables.  You also got a kick out of the fact that we all have to stop for cows to cross the road, like the geese at home.

I don't think you understand this yet, but Dad has had to drive on the left side of the road our entire time here.  He is doing remarkably well, despite the capitalized "DRIVE ON THE LEFT" signs and the high price of car insurance.  

So yesterday we hung out at our amazing airbnb until noon, when the rain let up (sort-of) enough for us to go to the Donkey Sanctuary, which is amazing.  So many donkeys are abandoned or mistreated, and this place offers them a space in which they can heal.  Even though we got absolutely drenched (and learned that donkeys, unlike horses, hate the rain), we did get to meet some sweet donkeys:

Your favorite was Bocelli who, like the singer, is blind.  He came right up to you, so we got you a stuffed Bocelli to support their charity.  We also adopted Bocelli for a year; you can adopt any of the donkeys here.

We truly enjoyed this place, the sweet donkeys, and the beautiful views of the castle.  I'm less than excited about the food- I ordered a pastry with chicken and mushrooms inside and it came slathered in gravy; my side salad also had a mayonnaise-drenched coleslaw directly on top.  Thank God for the ciders, which are my saving grace here food-wise.

Today we left our idyllic airbnb and travelled to Dublin.  We stopped at a rest stop which advertised itself as Barack Obama's ancestral home.  Intrigued, we used the bathrooms, purchased food, and then treated ourselves to the museum explaining that Obama's great-grandmother was actually from this small town in Ireland, Moneygall.  The food and coffee were great, and the exhibit was really interesting, actually.

A museum in a rest stop has got to be the strangest thing I've ever seen, but I learned a lot about the Irish origins of Presidents Reagan, Clinton, Bush, and, of course, Obama (who said he would have to replace the apostrophe in his name).  Ha.  

In Dublin, we only had time for a really tough, windy run today; we ran by the water, it was pelting down rain, and it was tough to move, but you enjoyed it, as you always enjoy running with Dad.

Tomorrow we will add some culture to our lives and see the Book of Kells, Dubliniana (the Viking museum), and Dublin Castle, before we move on to England.  At that point, I will be doing my archival work, so this blog will have to wait until Dad can send me some pictures.  

Ireland Days 2 and 3

 Dear Jules,

We've been so busy here that it's hard to find time to post!  I'll start with our airbnb, which continues to charm.  There's actually an old structure on the grounds here:

It's pretty amazing to look outside my window and see that!  And you continue to be charmed by the dogs here, especially the puppies with whom you like to play:

On our first full day here in Ireland, we drove up to the Burren, a really unique, rocky area that looks like a combination of El Paso, where Dad was born (desert) and Charleston (swamp).  

It really feels like an alien landscape, something out of a science fiction movie!  You enjoyed your first hike here, although the rocks were a bit intimidating.  But you looked fashionable doing it.  And by the way, if you ever feel nervous, remember how scared you were to climb down those rocks.  But you conquered your fear and you did it; as Eleanor Roosevelt said, courage is the ability to do things despite your fears.  We are so proud that you did the entire hike!

After this, we drove to the famous Cliffs of Moher, and they did not disappoint.  It is probably one of the most beautiful things I've ever seen.

Because we all love to run--and because you were getting quite tired--, we got the stroller and ran all the way up the cliffs and back.  

It was so memorable--and also by the time we got back to Adare, at 9:30 p.m., it was still light out.  It's truly hard to believe.

Today we went to Killarney National Park, where we did a 10K run and stopped to see the sights.

After that, we had the best time at the Deenagh Lodge Tea Room, staffed by people with Down Syndrome from Down Syndrome Kerry.  It was really awesome for us, and I hope for you, to see these people working and contributing- this is a picture of you with the person who served us:

After lunch, we stopped to see a waterfall along the Kerry Ring, but it was raining hard and we didn't stay long-

And anyway, you were tired.  You feel asleep on the way back, using a bag of chips as your pillow.

I'm tired too.  It's 11:15 already...tomorrow we will hopefully see the Donkey Sanctuary and also Limerick.