Judgement

I hate to do this, but I must. I've simply become too bitter to not blog about it and hope for some relief.

I have recently gone through a nasty break up - no not with my adoring husband. A person who I considered one of my best friends, just used an overly stupid excuse to explain that she no longer wants to be my friend. Her excuse? She doesn't like my husband. No really. And while her email describing her issue with Jason was more detailed than that, the point was pretty much the same. (And yes, it was delivered via email.)

Now I have unbelievably great girlfriends, some of which have husbands who, well, shall we say they aren't the most considerate of men. I don't pass judgement on their relationship, they are all big girls and can handle the situation. And if, God forbid, they come to a point where they can't or don't want to handle it any more, then I am confident that they know how to solve the problem. (I don't mean using a mediator by the name of Smith and Wesson either.) And should that time come, if they need my support then they will have it. Until then, I am a compassionate friend, listening, offering my opinion when solicited (and sometimes when not solicited) but NEVER judging. That's simply not what friends do.

This particular former friend, seems to think it is okay to pass judgement, and apparently thinks I should be grateful for her friendship and input. Well, no thanks. And while there is so so so much more I would love to vent about regarding this situation, I won't. Simply put, the friendship no longer exist. I don't acknowledge her, she avoids me, and we move on. What a waste.

Happy Birthday Jack!

At about 3:00 AM on this day, three years ago, I woke Jason and informed him "It's that time". After a few moments of incoherence, Jason shook off the sleep and was up and dressed in a flash. We packed up the car and calmly drove the short route to the hospital. Later that day,at 6:01PM, Jackson Elliott Bender entered the world. It was the beginning of a difficult but beautiful journey.

So happy happy birthday to my Boy. I hope this day is filled with all his favorite things: cars, trucks, books about cars and trucks, Elmo, Blue, Rocket, trains, lawn mowers and vacuum cleaners.

Thanks to those of you who have recently helped us celebrate all things Jack; Our happy HEALTHY baby Boy.

Echocardiogram

Good news! Jack's echo was completely normal. This is obviously great news, however the genetic testing we drew blood for on Friday will ultimately give us the best indication regarding any possible cardiac implications. Three weeks and four days for those results.....not that I'm counting.

Forever Five

Jason and I tease Ainsley that she will be five years old forever. That we've decided she won't have any more birthdays, because we really enjoyed her at the age of five, and we want to continue to enjoy it. So no more birthdays for her. She usually scrunches up a silly face, and says "You're kidding. Right?" We just give her a smirk but we both know we're not really kidding.

We drove to New Jersey on Saturday for one of our dear friends' daughter's birthday party. She and Ainsley are nine months apart and get along famously. It was to be a sleepover (for us all) so we were (over)packed appropriately. On the drive up Ainsley was talking to us, the topic I don't recall. As I sat there listening to our Girl, it was hard for me to remember she is six years old. Not because the manner of her speech, but because I can hardly believe she's six. I keep picturing her little cherub face at three years old surrounded by her long wavy dark blonde hair. I am sometimes shocked to open the car door and see her so grown.

But I am thankful for those stunning moments that remind me to slow down and enjoy her often quirky little ways. It is nothing short of remarkable that, for the amount of time Jackson and his appointments have demanded, she is as well adjusted as she is. She has shown no bitterness or jealously towards her little brother or the effort he requires, and she would have reason to pout, but she chooses not to. At six years old, she's more mature than many adults I've known.

Follow up Friday

As mentioned in my previous post, Friday was spent dashing from appointment to appointment along North Broadway.

Jackson's echocardiogram finished up around 10:15 (we don't have the results yet), just in time to dart down the street to KKI for his PT appointment. He has a new therapist there, so it was very much like starting over again. I'm usually more prepared for such things, providing his mildly extensive history via thumb drive or spreadsheet. (Seriously) But Friday I didn't have either with me, so I had to go through it all again verbally.

Once finished with PT, we trotted on back up to the main hospital to pick up a copy of Jack's latest MRI. Ronni (Genetic Neurologist) has suggested we request Dr. Bill Dobyns of Chicago to read it as well. Dr. Dobyns has agreed, and had some intersting input on the unofficial report(quite contrary to Ronni's). So I'll be sending the CD-ROM of images to him (along with a "donation" to his lab - as required by the good doctor).

We were attempting to do Jack's blood draw prior to our next appointment at KKI (Fairmount campus) but due to the unusual nature of the testing to be performed it was taking the phlebotomist quite a lot of time to sort out the coding. So we gave up and went to see Dr. Lipkin. He didn't have anything truly profound to say, although he noted that he was very pleased with Jackson's increase in verbalizations. He also said that he had never seen heterotopia or hypoplasia before, something that was quite astounding to me considering he is known as one of "THE" foremost developmental pediatricians in the country.

Once we finished with Dr. Lipkin, or rather he with us, we trudged back down to the main hospital to complete the blood draw. Luckily, the paperwork and coding had been ironed out, and the draw was quick, though not painless.

Four weeks for the results, although once again no seems to think any of the tests will reveal new information.

Celestial alignment

We will tomorrow, have the great pleasure of spending almost all day (9:00am to 3:30 or so...) downtown on the campuses of Johns Hopkins and Kennedy Krieger. We have a string of appointments and therapies all of which, more of less, occurred by happenstance. It is remarkable luck to have so many appointments scheduled on one day - less trips downtown, less work missed, less parking to be paid.....the kind of luck brought on by proper alignment of the celestial bodies.

Let me clarify a few things...

First and foremost, I know it could be worse. We are very fortunate that (for the most part) we all have our health. However, telling myself that hasn't seemed to ease my melancholy of late.

Secondly, several people (whose names will remain anonymous) have remarked that they have chosen not to read the blog, because "well, its just so hard." One individual even went so far as to call it depressing. Really? What a revelation. I'd like to scream at these people and say "Gee you think?!" But I refrain. I created this blog as more than a method of communicating Jack's issues. It is my own personal sounding board. And while not all the entries are about Jack, he does continue to be the biggest source of my own personal strife. It was only recently, after discovering several other blogs kept by special needs parents, that I figured out it is okay to have an insane range of emotions when dealing with your children (any children - not just special needs children), and even more okay to blog about it.

Thirdly, please don't feel sorry or pity for our situation. As I pointed out above, it could be worse. I have my days when I don't mind the uncertaintity so much, lately those have been fewer and far between. Somedays I may be less than prompt in responding to emails, less than perky when greeted out and about, or just plain disheveled looking, remember this blog and you'll know why.

Our meeting with Ronni, Jackson's Genetic Neurologist, went pretty well. He seems unconcerned about the possibility of AT, and feels confident that we will receive a negative result when we do the genetic screening. And we will be doing a screening for AT as well as the Filamin A genetic mutation. Friday, I'll be dashing down to Hopkins first thing in the morning for Jackson's echocardiogram, blood draw, and physical therapy session at Kennedy Krieger. The results of the blood draw won't be available for three to four weeks.

We drove the kids to my parent's house in Kentucky for the long weekend. It was a nice reprieve from the daily grind, and we were fortunate enough to enjoy a visit from my brother and his family. While we were there we received some heartbreaking news. Our friends, Rick and Amy Bucher, lost their three year old daughter to neuroblastoma. Arden battled fiercely for the last ten months while Rick and Amy researched and fought for every treatment possible. In the end, the disease was just too much. We are deeply, deeply saddened. I could blog about this for a very long time. Amy and RIck are truly amazing people and Arden was a little ray of pure sunshine. But you would be better served to read about their unflappable spirit yourself. Arden's page is linked on my blog page - it will be time well spent I assure you.

The sadness of Arden's passing is more overwhelming than I ever thought it would be. Couple that (although this pales in comparison) with the newest round of information about Jack, and I have found myself in a bit of a melancholy funk. Not exactly sad, but far from contentment.