Sunday, December 5, 2010


Last week was an amazing week for Sammie B (and for me and B!). I literally felt like I was walking on sunshine all week. We had several more transitions :o) She's still not doing it 100% by herself everytime, but sometimes she is, and the other times, she just needs a teeny tiny big of help. And her pride in herself when the transition is done is PRICELESS. And days 2 and 3 of school were just as fabulous as day 1. It was just the week I needed . . . leading up to this week, which is sure to be filled with some anxiety.

This week, on Thursday, is our long-awaited appointment at the Center for Hypotonia at Johns Hopkins in Baltimore. I'm nervous, though the "walking on sunshine" feeling has sort of kept me calmer than I'd expected. But, I'm not excited, and frankly I wish people would stop asking if I am. Hm... Excited that I have a reason to fly across the country to take my daughter to a doctor? NO. Excited that she likely will have blood work, etc.? NO. So, excited is NOT one of the emotions I'd describe leading up to this appointment, and I'm shocked that that is the first question everyone asks when they realize the appointment is this week.

Sam LOVES planes. Loves them. She's flown so much that when we pull up to the airport, she immediately knows where we are and starts signing "airplane." But all of her previous trips have been FUN ones, and my heart will be a bit heavy as we board this plane, knowing that it is taking us to a doctor appointment (where needles are likely). So, not excited. Quite frankly, it stinks.

There are parts of the trip that I AM excited about . . . Wednesday, Samantha has a date planned with another four-eyed cutie, Joe. Joe's mom and I are going to take our sweet beans to lunch, to see the harbor and then to a children's museum. (B is headed into DC for the day to lunch with an old friend of his). Friday, we are going to take Sam to the Baltimore acquarium. So, exciting things sandwiching the OTHER day of our trip - appointment day - Thursday, which I'm just not excited about.

I'm scared. See, part of me wants to know 'why' certain things are just not coming easily to Sam, why she's so very very low-tone, but the other part of me (a much bigger part) is just content and COMFORTABLE in our grey area of no diagnosis (particularly since we have seen neurologists, geneticists, etc. -- so its not like I'm content with not knowing and have been just blindly going along and not looking for an answer, we have, but didn't find one, and settled into our "no answer" comfort zone). Without a label or diagnosis, I've finally finally (most days) reached a place of peace. But of course, (and our sole reason for going to Hopkins) we don't want to stop our search for answers prematurely and have there be something we are missing that might be treatable. So, we go.

I guess what I'm most terrified is getting an "answer" at Hopkins that somehow turns our world upside down. I can remember SO very very clearly the feeling after Sam's first PT evaluation when the PT said, "have you seen a neurologist?" I felt like my entire world had turned upside down. I could not function during the period it took for us to get an appointment with a neurologist . . . and even though the neurologist never found anything going on other than Sam's low-tone, we've had many periods of worry and panic over the last year and a half. But lately, lately, I just feel like the ship (that is our life) has righted itself. Like we've found our new normal, and we are just at peace. Not every second of every day, but most of the time. Peace. And, I don't want to go back. Back to that feeling of having my world literally turned upside down.

B's cousin sent us the sweetest message, which (quite insightfully) recognized that this is not a trip we are likely "excited" about . . . he said he just hopes that the trip goes as smoothly as possible and that the people we meet there are compassionate, intelligent and insightful. I hope those wishes for this trip come true. And, more than anything, if there is an "answer" to come out of all this, I hope it is one we can find peace with . . . and one that won't prevent our sweet girl from living the long, full, healthy, magical life she deserves.

She fills my world with such magic and sweetness.


Kristen said...

you said it so well...all of it. p has his neurology appointment on thursday. it makes for a little more nervous of a week. i am thinking of you and sweet Sammie.

EH said...

I am so envious that you have such a great flier!

Best wishes that your little rockstar has as much fun as she can (and with that itinerary, it sounds like it will be fun!) and that the doctors you deal with make the consult a worthwhile journey.

Anonymous said...

Good luck with the trip.

WilliamsMommy said...

I know that trips and appointments like this are never fun or exciting, they are necessary though. Sammie is so lucky to have you & B as parents. Good luck and I can't wait to hear all of the details!