Battles against terminal illness, anxiety, and life!

June 1st we head to Johns Hopkins Children’s Center.  I’m not sure Baltimore is prepared for our circus to come to town, but ready or not, here we come!  We’re hoping to sandwich the icky things with some good.  Thanks to some friends who live around there, we are certain we will have more smiles than tears.  Ok, now don’t get me wrong, there will probably be more tears than we would like, but we are hoping that we can keep our brave faces on and enjoy ourselves some too.

We go with the hope that these folks will provide us with some answers, but at least some direction.  Rumor has it they are more than helpful!  (wink, wink)

In the past two days we’ve connected with some people who appear to be quite amazing.  They are further along in their A-T journey, and we hope to not only gain some knowledge from them but also friendship.  Between old friends and new, we’re keeping our chin up over here.

Today we had a great day.  We went and played with some friends at a local indoor playground of sorts.  We swayed to live children’s songs being played on the guitar, slid down slides, and had plenty of smiles.  Can one really ask for a better day?


Comments on: "Look out Baltimore! Here we come!" (4)

  1. you have the best attitude my friend. I glad that you are finding support with old and new friends. please know that I am here for you too

  2. Grandma P said:

    Before and after the appointment we are going to have fun, not sure what we will do but it will be fun.. Oh ya and maybe even ice cream.

  3. Hopkins has a very strange way of creating sooo much anxiety (cause really, you dont end up at the Hopkins specialist for fun times!!) but at the end of every appt there, I always feel prepared, educated, and like the docs have my back. And that is what is most important – docs that know what they are talking about when it comes to these syndromes/diseases our little ones have and docs that stand with the parents to fight like hell!!!

    Seriously. We want to see you when you are here. Call me or email me – let’s plan something fun.

    Oh, and if you need help getting a hotel rate in BMore, call me too – I can hook you up!!!! 🙂

  4. Kimberly said:

    That is super close to me – if you all need anything please let me know.

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