Saturday, August 30, 2008

Getting started...

So I heard that everyone had one of these things, and I wasn't really sure that I wanted to have one as well, although I enjoyed reading others' updates and stories.  I didn't seriously consider it until Carrie told me that it is a great place to just say, "Bleeeaaaah..." Yes, that's her word.  Well, I think maybe that's just what I've been waiting for -- a place to say, "Bleeeeaaaah..." And then she and Susan told me about all the incredible people I'd find here, and I'm just beginning, but I'm just gonna say right now, that if I neglect my children or forget to pay the water bill, I blame them!

We just returned home (did I just say that?) to Raleigh from our beloved Kentucky after a week long visit all over the state.  We saw our nephew, Drew, off to college and spent time with old friends (but unfortunately, not all of them) in Louisville, saw my dad for the first time in a year in Lexington, celebrated John's birthday with his grandparents, aunt, and cousins in Owensboro, and had some happy, happy reunions while staying with mom in Henderson.

Two highlights are really ringing in my head right now.  First, seeing old friends. Landy and I had the chance to visit with Carrie at her house, which I have unbelievably only ever seen from the outside. That alone would have been great enough! But lucky us, Ellie and Susan and her pink bike were also there!  I felt like a kid again, but a kid who was enjoying some super-fancy wine (thanks, c) with three of her favorite girls in the world! I didn't sleep right for nights after that! Thank you, all of you girls, for sharing that much-needed evening with me, and I mean to do that again soon. Also, the next day, I met sweet baby Wynn, my bff Noelle's new (and I mean 2 weeks...girl, what are you doing out of bed?) baby boy, and saw her 2 beautiful girls, who have grown so much! North, south, east, west, wherever you go, old friends are best!

The second is the time that we were able to spend with Laurie and our sweet nephews, the twin tornadoes, Jack and Luke!  This is difficult for me to say, because I don't think I will do it properly, and I've really never said any of this out loud.  Laurie, if you read this, please please please read to the end and don't be upset at me for how this starts... The truth is that for the last year, I haven't enjoyed...no, haven't been able to enjoy our visits with Jack and Luke very much. The reasons for this have nothing to do with those sweet boys, and I love them like I love my own children.  I have big dreams of them growing up with John and Ben, but until recently, I didn't know if those dreams would ever be possible, at least for Ben.  For those who don't know, Ben is nearly 16 months old now, and he is significantly delayed across the board.  He had torticollis (sort of like a neck injury, in his case, before birth) that resulted in plagiocephaly (a flat spot on his head). His was so severe that the right side of his face was noticeably forward of the left, his ears were visibly uneven, and his eyes were misaligned as well.  When he was 6 months old, he got his helmet,which has since fixed every weird deformity his head would have had...cosmetic, mmhmmm. At the same time, when, by the way, we were still just settling into our new house after moving to NC again, he started physical therapy twice a week. I naively thought that we'd go for a few weeks and get everything hammered out....not so fast, Allie! Until he was about 7 months old, he rarely smiled, never laughed, and still couldn't even roll over.  And he also wouldn't eat any baby food. About that time, he began doing all these things, although it was still difficult to get a laugh, and I  (again, naively) thought that we were off! For the next 5 months or so, nothing. Not one new thing, not really.  I strained and searched for any little change in his behavior or his abilities.  This was the most difficult period for me, for sure. Landy was worried, too, I know, but his job is 30 minutes away in an office with other people and the subject matter has nothing to do with the health and well being and what the hell's wrong with our baby?! For me, it was day in and day out fear and hoping against hope, crying and praying that Ben would just be okay, just please be okay.  At the same time, I needed to take good care of my sweet John, all the while dragging him to endless appointments for Ben, sometimes up to 6 or 7 in one week (but usually just 3 or maybe 4).  Orthotics, neurologist, opthamologist, pt, peds.  CT scan, vision tests, measuring his sweet little head, developmental evaluations.  Our absolutely wonderful pt, Jen, who has been one of Ben's strongest advocates, laid it out and told me that since Ben was turning a year old and still could not sit unassisted, she thought we should put him in Early Intervention (like First Steps for those of you in KY).  We also decided to have an MRI, because I just had to know, even though I didn't think I really wanted to know.  I felt certain he had some form of cerebral palsy, because it would explain so much of what he couldn't do.  I couldn't blame all of the delays on the torticollis anymore, even though I certainly tried.

After a botched MRI when Ben stopped breathing due to oversedation, we had an agonizing 2 week wait to retry.  After that, an even more agonizing 3 day wait to receive and discuss the results with our pediatrician/developmental expert (seriously, I should have listened to him all along and not worried quite so much).  On Fridays, he works in Clayton, a 45 minute drive from our house.  This is not a fancy place... on the way there, I saw a burned out strip club with a marquis announcing that they needed information on the fire.  Didn't care. Had to go. Couldn't wait another second.  He must have thought we were crazy for the aforementioned not listening to him, because he informed us that Ben's results were normal.  When he said that word, the world stopped for just a second, and then I think I breathed for the first time in nearly a year. The consensus right now is that for an unknown reason, Ben's vision developed very slowly, and now the rest of him is beginning to catch up.

This has been a good summer for Ben! First the great news, which shivered all my sweet neighbors who worried for us, too.  He is also in EI, has 3 fantastic therapists who all kindly come to our house and also serve as my mental health therapists! He has made great strides...sloooow, but steady.  Ben can now sit up unassisted and play while doing so, he can play while on his tummy, but still hates it so he does it with a grudge, he can stand with a great deal of assistance, he can clap and smile and say dada, dog, Ed (his name for our dog, Spuddy), and mama! And you know, sometimes I think he'll never quit laughing. It's the sweetest sound I've ever heard.  And it's been good for me also...I am feeling like myself again, and that's almost always a good thing!

And now, sweet Ben, I can see that you will one day soon stand up and be able to walk and then run, to chase your brother and get into trouble with your cousins.   While I resent (what or whom, I have no idea) that I was unable to do so before, I am relieved that I can now enjoy all of the milestones that my sweet nephews have reached, and I can appreciate them for what they are rather than just seeing what I feared you might never do. I can see the things that you WILL do, and I feel - finally - joy at seeing you boys all together! 


If you are still with me, then truly, you are my friend. Please come back...I promise not to be so longwinded! Lordy, this has been long.  Bleeeeeaaaaaaah....