Rambling...

This post was going to be about prenatal testing based on something I read the other day.  But while writing it took a different turn.  And as the title suggests it ended up being a rambling post.  That’s what I love about pouring it all out; I sometimes don’t really know where these things will end up.  But I’ll start here:  I read a comment on a blog the other day that said something along the lines that doctors don’t like to direct people who are expecting babies with Down syndrome to blogs or other “real life” encounters because they tend to be overly positive viewpoints.  Granted I read this in a comment section of one of my favorite blogs which, let's face it, comments on the internet (like a lot of things on the internet) could be written by anyone and almost always have absolutely no basis in fact.  But this one got me thinking.  I’m an optimistic person, my glass is always half full. I will always look for the bright side of any situation so maybe I’m not the best person to shed light on this, but raising Maddie Grace has been EXTREMELY positive.  Maybe all of the real life experiences are overly positive because there’s not much negative to report.  Or probably more likely, the negatives that come with raising a baby with Down syndrome are far, far outshined by the positives that come with being a mother.  Aren’t there negatives that come with parenting any child?  I was explaining it to one of my non-mother, non-pregnant, friends the other day, when you describe parenting it all sounds so un-fun.  The opposite of anything exciting or the least bit enjoyable.  I mean you’re up all night, you’re covered in poop or other such baby goo, getting out of the house can be a challenge, if you’re like me you are shackled to your pump, and you have to give up glorious dairy, etc.  But it’s not like any of that matters to you at all, it all kind of blends into the background because there is such a profound sense of purpose and love in being someone’s mother.  It doesn’t matter that you smell like rotten milk or that you can only get yourself 97% put together in the mornings because you get to be someone’s mother and that feels like the most important thing in the whole world.  When that little baby smiles a big gummy grin, or giggles from her head to her toes at your horrendous singing, all the negative just slips into the background.  If that’s true for parents raising typically developing children, why can’t that be true for me raising a child with Down syndrome?  Why can’t my negatives slip into the background too?  Granted they are a little more profound that a little baby poop, or being in a constant state of tiredness, but why can’t they be put into the same trivial complaints as those? 

Now here’s where I’m going to get real and admit, yes there are some pretty sucky things  that come with have a child with Down syndrome.  I get really frustrated with all of the endless paperwork, keeping up with all of the appointments, and let's not forget the constant flow of medical bills (which could seriously be a full time job – and Maddie Grace is 100% healthy, so I can only imagine how exhausting it is when there are medical issues as well).  For example, Maddie Grace in her 5 months of life, she has been to her regular pediatrician the standard amount (2 days, 2 weeks, 4 weeks, 8 weeks, 3 months, etc.) but has also seen the Cardiologist, had a hip ultrasound, has regular speech therapy, has a regular meeting with her Early Interventionist, PT, and has been to the Down syndrome clinic.  We have appointments in the next two months to re-visit the Cardiologist, see an ENT, as well as an Ophthalmologist, and she has to get a very scary round of blood work done.  Did you know that children with Down syndrome are at an increased risk of developing childhood leukemia?  Let’s just say I’m not looking forward to that round of testing.  The blood draw alone is scary enough for me.  I won’t even allow myself to think about any possible results.  And that’s just the medical side of raising Maddie Grace, who is healthy, so I can’t even begin to think about the things that someone raising a child with Down syndrome who is not healthy is going through.  

Adam makes her laugh more than anyone!

We are also lucky in the fact that Maddie Grace is doing really well in her gross motor movements and she’s improved by leaps and bounds with her speech therapy.  Her tongue thrusting and feeding have improved so, so much in the short time we’ve been working with our therapists.  This stuff can be really overwhelming and there are days that I just feel like I can’t do it – I want to scream that it’s not fair!  And why my child?  BUT as soon as those thoughts enter my mind I look down at my sweet, sweet baby and realize there is absolutely nothing I wouldn’t do for her.  Nothing.  If you are ever faced with a challenge like this I can promise you that you will get through it, that you do have what it takes.  That’s the sucky part, but here’s the amazing part.  Maddie Grace lights up and smiles with her entire body when she first wakes up in the morning or from a nap.  She laughs out loud at her daddy all the time, they have a very special bond that’s incredible to watch.  She’s turning into quite the little fish and seems to love being around water.  She loves being outside.  Just walking out into the sunshine calms her completely.  She’s such a little stinker in that she fights going to sleep with all her might by crying out and trying to pull away from cuddles, but she’ll catch my eye during one of her little tantrums and smile so big, then fold her little body into mine, and be peaceful.  She will protest when she’s left alone in her swing, but as soon as she sees you she lights up and the expression on her face says, “well there you are, I’ve been looking all over for you.”  Her little bottom lip rolls out about 3 feet when someone holds her that she doesn’t recognize and seriously it’s the sweetest and saddest thing you’ve ever seen all at the same time.  There is no way I would ever trade any one of those moments, not one of them.  She is my perfect child, so therefore, I accept all of the challenges, and refuse to apologize for being positive, because guess what?  My reward is truly awesome.

I'm a very happy girl when I wake up!