Friday, February 3, 2012

day by day

Yes I can smell my feet and don't I look like the cutest little "girl" even in the ER! 

Oh sweet baby!
Well last weekend started out promising, jeremy was home after a long week away and the kids were on the road to recovery!  Then Saturday, out of nowhere, literally, Nolan was burning up, 103 temp, gave him ibuprofen and nothing would bring it down, he just wanted to sleep, ALL the time!  He seemed to be having trouble breathing and if he were my first I would have brought him to the ER right then, but I've seen a fever once or twice before, so I figured it would pass.  Sunday morning, he was still sleeping at 9, after I checked on him a dozen times throughout the night, to see if his chest was moving steadily up and down, and it was, but frequent, as if he just ran a baby marathon, only he was sleeping.  It was disturbing.  I brought him to Children's Hospital ER arrived by 940, we were the only ones, so nice.  He had a temp of 102 despite the fact that I just gave him ibuprofen about 45 minutes prior.  He wouldn't eat, barely eaten anything the day before and was limp in my arms.  It's horrible having sick kids.  I joked last week about the trials of sick kids while you stay at home, but this was no joke.  This was a really sick kid.  After our stay it was determined that he had RSV and pneumonia.  My poor baby.  He just kept falling asleep, which was worrying me more, he had no energy, wasn't eating and his breathing increasingly becoming labored.  He came home and slept 20/24 hours a day for three days.  It may seem like wow, I bet you got a lot done, but I couldn't sit still wondering if my boy was OK, should I wake him, it just seems wrong to wake a sick baby, but scary for a 17 month old who just doesn't sleep that much!

Yesterday I brought him in for a check of his Oxygen levels and just to make sure the pneumonia was cleaning and sure enough, he ate, all day, was awake and took a normal nap, it's so nice to have my boy back.  It's so nice to see his little smiles, that truly never left even in the ER and when they put this "lavender" gown on, he managed to crack one, despite wanting to deck the nurse that thought it didn't matter that he wear does, he is all boy and was not pleased...OK I am kidding, and it was cute to see his sweet little "girly" face.

Mommy I can't look at you, I missed my bear!
All of this, this past week and this past 17 months, brings me back to the lessons that I keep learning.  To take everything day by day.  Live now.  Enjoy now.  I used to get so "worried" about what our future looked like as a family, what does a 20 year old with down syndrome look like.  You may come up with an image.  You may fill in that blank for my boy.  And you'd be wrong.  I remember reading something when he was first born and I was struggling to wrap my brain around it, and a woman was talking about seeing a group of adults with down syndrome walking into a McDonalds and she stopped.  She couldn't stop thinking and crying to herself that was the future for her kid.  Here were these adults, dirty clothes, bad haircuts, overweight and just looking overall awful and imagining her daughter in that role.  Someone said the most wise response.  Did you look around the rest of the restaurant?  Because there had to be plenty of people with typical chromosomes that looked the same way, if not worse.  And there were some in suits and some beautiful, some large, some small.  It was brilliant.
I don't have time to take pictures, I am studying!

You don't know what Nolan will act like, look like, talk like or be like anymore than I know what your child is going to be like.  We have an idea in our head, that our kids will be amazing, cure cancer, be the next Brad Pitt, but in reality, they most likely will be some where down the middle like most of us.  And that's just fine.  They will have their struggles, triumphs and times that you want to look the other way and think "oh that kid on the ground screaming, he's not mine!"  Because I am at such a place of peace right now with it all, it scares me sometimes, being the ultimate "realist" I know the shoe will drop some day and I will struggle with this all again, but right now, its so easy.  So perfect.  I want Nolan as he is, not an ounce of him different.   A beautiful gift, unconditional love and how do you know you possess it if it's never tested? It's taught me to take every day and appreciate it, love my boy and smooch him and snuggle him as with all of our kids, because you don't know tomorrow and what it looks like.  I am so happy to say my boy is happy, has energy and is playing today and for that I am so grateful.  My heart is heavy when any of our kids are sick.  And when they are that sick, it aches until they are whole again and smiles outweigh cries.  Snuggle your babies, your doggies, your men, love them today and enjoy, it's FRIDAY!!!!!


  1. Poor Nolan! Glad to see he's feeling better! I love the purple gown..but bet he's glad to be back in his boy attire! What a cutie! I am going to go snuggle with my Annie right now. Thanks! I love reading all your posts

  2. So sweet of you!! I love reading your posts as well quite the globe trotter your girl is!!!!


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