I am a very lucky man – I’ve got an amazing wife and am the father to three wonderful kids. Lylli was born on Halloween in 2008, Gracie was born November 2010 and although she only lived for 17 months, she will remain as much a part of this family as the rest of us, and Mickey Gray, our first son, was born in June of 2012. I’m not going to say that life has gone exactly as I would have wanted, but it is a good life and I am determined to make the best of it.

This blog is an attempt to document my quest to become a dad that my family can be proud of.

Tuesday, January 25, 2011

A Day In The Life

Yesterday was a very busy day – This week I'm paying back the person that graciously took my turn in the on-call rotation at work while Gracie was in the hospital (I hand the cell phone off to a coworker tomorrow, but unfortunately my actual scheduled turn in the rotation is next week, so if it's possible, I'm wound even tighter these days due to the added stress of 24 hour availability for work).   Fortunately though, the fact that I got a few calls over the weekend allowed me to leave early so I could pick up Lylli from daycare and make it home in time for our first IFSP meeting - Individualized Family Something or other Plan -  The baby equivalent of an IEP.  It's very strange that we already have people coming into our house to work with her – If you know my view on the first few months of having a baby in the house, you know I have equated it to finding an abandoned squirrel in the yard -- you feed it and clean up after it – and in return, it just basically lays there – It's a lot of work!!!!   Fortunately for Gracie, and Lylli, for that matter, Carrie is much more nurturing than I am (I'll try to figure out what I bring to the table later – but for now, let's just pretend/assume that we both have strengths).  Now, I'm not all bad – I'll admit that the first time the baby smiles at me, I melt and at that point, I then agree that all of the effort is worth it – but it wouldn't be me, if I didn't rant about it.  I will also admit that sitting in the meeting is hard for me.  Normally, probably not always to Carrie's liking, I'm the one talking in things like this – but as most of you probably know, Carrie is a special education teacher and is far more qualified to be the one representing our thoughts – not that it stops me completely – there are still those moments where I interject with something I think input worthy and the room full of people look at me for a minute in silence, and then start up again with a pause  "OK, so what I was saying…" – I'm afraid as I learn more, I'm only going to have more opinions – but my philosophy is, if it's a meeting that I was asked to attend, then it's a meeting where my input is expected.  I think these first few meetings are basically formalities – we all know that she's very young and as far as we can tell is hitting the milestones for all babies her age.  As time goes by, they will address any concerns or issues that pop up.  I'm pretty sure many families would not be doing this yet, but given Carrie's background, we looked into getting it going right away so we can  give her every chance to succeed – However, we both agree that there is definitely a law of diminishing return with all of these people working with her – and are only going to encourage her to work at her own pace – if she's not ready for something or it becomes too overwhelming, that's OK – she will have her own personal definition of success and timetable – I think it will be a constant battle (for me) to not under estimate or over estimate what Gracie is capable of.  I'm not sure if that last sentence conveyed accurately what I mean –  what I'm trying to say is Gracie will be Gracie and if she can't do something, that is fine, but I'm not going to assume she can't either.  In a way, this is teaching me a healthy lesson about how all children should be raised – why is it that when a person is a certain age, they should know this, this, and this.  Maybe Gracie will be fluent in Spanish by the time she's two – which would be really cool because I'd really like to see how it sounds when that Gene Simmon's tongue of her's rolls an 'R' – "Hola, me llamo Grrrrrrrracie".  We joke that we're going to go as the band "KISS" for Halloween.  This kids tongue is almost as long as her eyelashes (of which are of movie star proportions).  OK – rambling again - this is probably a good time to segway to the rest of the night.  Following the meeting at our home we loaded up the car, which is no small feat these days (I wonder what the other cars are thinking when they see an IV bag filled with breast milk hanging from the hook meant to hold the fresh dry cleaning – I wonder if I can rig up something with an extra windshield washer fluid motor so we don't have to bring the pump with us in the car?) 

Anyway, there were so many people from the Roseville Area Parents group of families effected by Down Syndrome that have prayed for and followed Gracie's journey.  She was actually born on the night that this group last met, so after asking all the doctors, etc about it, despite our "no large group" policy, we made our way to the meeting  -- Half of the reason we went was to thank all of them, but we don't get out much and got so caught up in showing her off that we forgot that part.  Anyway – my earlier thought about only pushing Gracie to go at her own pace was a topic that was brought up by several families last night.  Although many things may be delayed, the magnitude of the celebration makes up for the extra effort it takes to get there – Lylli gets a couple M&M's for a poopy – by the sounds of it, Gracie may end up with a full fledge piñata celebration when she finally perfects that process (and why not?  She'll probably be fluent in Spanish as I said earlier).  I'm glad we went to the meeting, there was a couple there that found out, just last week, that their daughter, due in May has Ds as well as some issues with her intestines.  They too will be delivering at Abbott and then moved to Children's to stay in the same NICU as Gracie.  I hope we helped them a little with the advice we had for them.  I imagine it sort of felt like a group trying to sell them something – Its obvious that they're scared and as we went around the room, every set of parents spoke about their family a bit.   I had only been to one other of those meetings before – it was back when we were in their shoes – we had been fortunate enough to see, probably more than most, before we even knew about Gracie, that despite its obvious drawbacks at times, Ds also adds so much to a family – and I am learning that more every day.  Let's face it – we are somewhere between the experienced parents in the room and that new couple.  It was pretty cool to see the look in the other parents' faces telling thier stories – it was so obvious that they were thinking " if I knew then, what I know now – I would not have feared it as much or been as sad".  As bad as everybody wants to tell these new parents-to-be that its really ok, I suspect the pain and fear is a large part of what makes your family exponentially that much better and stronger when you come out the other side and realize that it's all good.  I'm pretty sure that doctors, nurses, teachers, and therapists are going to be a much bigger part of our lives from now on, but reading the faces of the other parents in the group last night – these small inconveniences will pale in comparison to the love that Gracie is going to bring into our family.  I've never been more confident that we can handle the Down syndrome part – we just need to get through all of this heart stuff first. 

No comments:

Post a Comment