Monday, June 28, 2010

More worries of a heart parent

"Why do we, as parents, worry so much?  There is always something to worry about when you have kids.  Always a 'what if' that plagues the back of the mind.  Why do we, as parents, place so much guilt on ourselves when it comes to our kids?  Why do we, as parents, feel a sense of failure over things that we cannot control?  Worry and guilt and failure.  Do they ever go away?"
  These are my thoughts tonight as I am desperately looking for the little piece of paper that had Early Intervention's phone number.  A piece of paper that I am almost sure I threw away, or tossed carelessly in the back of a drawer somewhere, thinking I would not need that number again. 
  Here's a little history:  When Mateo was five months old, he started physical and speech therapy. He wasn't "up to speed" with certain develpment milestones.  Most of this was due to the feeding tube he had placed at one month old.  Since it fed out of his stomach, it was uncomfortable for him to be on his belly.  His absolute HATE for being on his belly made him behind when it came to all his gross motor skills.......rolling over, sitting up, crawling, etc.  So he started physical therapy to help him catch up.  He also started seeing a speech therapist for feeding therapy to help him start eating by mouth instead of relying entirely on a tube to feed him. 
  Mateo had physical therapy for 4 months when his feeding tube was removed.  After that, he caught up on all his gross motor skills within two weeks.  A week after it was pulled, he was rolling over and sitting up all on his own (at about 8 months old).  Two weeks later, he was crawling.  He walked at 14 months old.  Not ahead of the game, but certainly not way behind either.
After he started walking, there really wasn't much need for therapy.  Other than a little "maintenance" visit here and there, he really didn't need it.  And since he didn't have a feeding tube anymore, he didn't need the speech therapy.  Mateo was discharged from speech therapy at 1 year old.  Over a year ago!  And he hasn't seen the physical therapist since last October.  It was a very freeing feeling when we signed those discharge papers.  Our week was much lighter in appointments than it had ever been since Mateo was born.
  The problem is, Mateo needs to be re-evaluated.  Some things have come up now that he is 2.  And I'm dreading making this phone call.  I have already put it off longer than I should have. 
 I consider myself pretty laid-back in regards to his development.  I have always said that I won't push him to do potty-train early, speak complete sentences early or start him on a "my baby can read!" path.  I always believed that he would figure things out on his own (with a little guidance) and that he'd let me know when he was ready.  After all, I don't plan to have an 8 year old still wearing diapers or a 12 year old that can't talk or read.  I know each child is different and Mateo would do all these things when he was ready at a reasonable age.  BUT.....certain doubts have started creeping in.  Where doubt is, there is worry. Where doubt is, there is that faint glimmer of guilt and failure. 
   My worry comes from Mateo's vocabulary.  Its not a BIG deal, but its enough to make me start wondering and worrying whether or not he's on the right track.  He is so smart!  And he understands so much!  But he is having a huge issue with communicating what he wants to say.  He has made up his own sign language for things and acts out some of what he wants to say.  He says words and talks all day long, but most of it is unintelligible to me and everyone else.  My heart breaks a little bit for him when he comes to tell me something that he seems to find so important but I have no idea what he is saying.  I can't even be sure if what I am saying back to him is what he is wanting me to say.  Sometimes, I'll reply with my best answer (since I have no idea what he just said) and he just gives me.....this, "that's not at all what I just said, mom".  It makes me so sad!  I really try not to compare him to other kids.  For the most part, I don't believe in doing that.  But Mel and I have noticed how so many kids his age have a much bigger vocabulary than him (not just a couple kids, but many)  and some are even talking in long complete sentences! 
  So, tomorrow I will call for an evalutation.  And I feel that, most likely, he'll begin speech therapy again.  He already has an appointment with his physical therapist for tomorrow for some other issues that we want to have looked at.
Having these therapies back, when we were so free from them, feels in some way like failure.  And not that Mateo is the one that failed, but that somehow, somewhere along the line, I failed him.  How?  I don't know.  And I can tell myself that that's not reasonable...but that little tiny voice in the back of my mind keeps popping up at the most inconvenient times to tell me its a failure of some kind. 
    Some of you may be saying, "Its just therapy for crying out loud.  What's the big deal?".  I have been telling myself that for a few days now!  Well, its really not a big deal.  He'll get the help he needs, get back on track and we'll move on with our lives like we did before.  But for now, it feels like a bigger deal than it probably is. 
    When we were discharged from therapy, it felt like a step in the direction of normalcy.  Mateo has had a beginning FAR from normal.  So much about his life has been un-normal.  And he doesn't have a body that looks normal.  He has a long battle scar all the way down his chest.  His "zipper" as we call it....which will have to be opened yet again within the next year.  His chest is a little broader than most, from having that breast bone broken, I'm assuming.  He has what looks like a 2nd belly button from where the feeding tube used to be.  He has more scars than one could almost count.  He's always on some kind of medicine.  He'll most likely have a life of certain limitations.  While to us, all these things make him so, so, SO special it is still going to set him apart from others at some point.  I am so proud of all he's been through and want so badly for him to see all this as accomplishments some day.  So to have one "un-normal" thing crossed off our list seemed to lighten the load a little bit.  And to have to go back to it, well, is a little disappointing. 
I don't suppose I will ever stop worrying about Mateo.  Like most parents, I'll always have something to worry about.  And if I ever do not have something to worry about, I'm sure I'll worry that I'm not worrying enough!  But I tell that little voice back there to be quiet and remind myself to relish and enjoy these days.  The days that Mateo feels well.  The days that he's happy and content and taken care of.  And while I torment myself with worry from time to time, he's completley and innocently careless.  In fact, he'll be loving therapy because he gets to be the center of attention....just the way he likes to be!