The last love

For as much as I love love, I’ve been surprised at how many of my February posts were a little forced. I thought it’d be easy to come up with 28 topics on love. Turns out, it wasn’t. There were a few that came easy, a few that surprised me & a few I did strictly to meet my personal quota.
But truly, I have a lot to love & am surrounded by people who I love & who love me back. I think the key to this blog is being honest. I think that’s what I need & just as importantly, what my new community needs. I don’t fancy myself a “Kelle Hampton” in this community, but I think promoting Down syndrome awareness relies on those of us in the thick of it to be honest. If I put on a big smile & hide my fears or anger or the daily challenges I face, I contribute to the unrealistic picture of Down syndrome. It’s not as bad as everyone thinks, but it’s not as good either & neither extreme is healthy for our community.
I’ve had a happy, healthy start to 2014. I’m ready for warm weather & new experiences. I love this outlet and am blessed that anyone even thinks to read it. Happy love month to you all!!

Love from others

I shared this last year on my facebook, but I felt it fitting to share on the blog as well; especially in the spirit of the month of love.  It’s hard to put into words the kindness and compassion NICU nurses have.  I have too many thoughts and emotions still to speak accurately about our time in the NICU.  I can’t say it any better than this:

Dear Jill & Jason
Another nurse told me about this blog. Thank you for sharing and reminding us all what it is like on the parenting side of things. My heart breaks for you and little David that he has had so many struggles and too much time spent in the hospital away from his family. I want you to know though that his NICU nurses have not forgotten him and have visited him in PICU & now in PEDS. Even when he was so pale & tiny in that ginormous bed, he was awake and smiling at us, turning his head to look at the one of us who was talking to him at the time. He’s a fighter and a heart-stealer, your boy… but those things we already knew. As nurses we are supposed to care for our patients equally, professionally, not get too attached. But every once in awhile, a very special baby will come along and claim a space in my heart. Your David owns a large piece of real estate there! Know that he is loved by so many and we are all rooting for him!
Love to you all!

Love for others

As much as I write about what a “spirited” girl Ella is, she really is incredibly sweet.  I’ve been telling Jason lately that I feel like things just started to click for her.  She’s been a better helper, better listener, kinder and goofier (in a good way).  She’s started to develop a sense of empathy and it makes my heart melt to hear her ask about others and worry about their comfort.  Last night she picked out special dress up clothes for each of her friends at daycare.  She thoughtfully chose what each one of them would want to wear.  She is loving toward others.  It’s such a treat watching her grow.

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Fight for love

I didn’t write anything about love this weekend. Not because there wasn’t anything to write, but because our love was busy focusing on our baby boy. All the love we had was going to him & encouraging him so there was none left over to write about.
Saturday night we went out for dinner and left both kids with a sitter for the first time. A few hours into our night, we got a call from our sitter (never what you want) She thought something was wrong with David’s G-tube because he was soaking wet. Jason went home to plug him back in, thinking it’d be a quick fix. Turns out, his button (the piece that is Inside his stomach) had been pulled out hours before. When David got his tube, we were told the hole can close up very quickly if it gets pulled out so take our replacement button & get to the ER quick! We got there a little after 10:00pm & they rushed us in. The inside hole had already started to close so they begin using a series of dilators to get the tube back in. It was a long, intense process & six hours later, the tube was in! Just when we thought we were on our way home, the ER Dr came in to tell us he wanted to admit David. His oxygen levels were at 74% & anything under 90% is concerning. They suspected more was going on and did a chest X-ray immediately. Our history terrifies us & we immediately jump to fearing another month long stay so obviously we were upset. David tested positive for RSV & Corona virus and was taken to the Peds floor around 8am. We were promised that if he had a good night, he could be discharged the next day, most likely on oxygen.
I called first thing this this morning & they said he was doing great! By the time I got to his room, he’d been on room air (without oxygen) for almost three hours! The doctors are thrilled and letting us go home without oxygen. He’s on an antibiotic & a steroid inhaler, but we’re going home!!!
God is good & our sweet boy knows how to fight. He doesn’t give up!

Global love

When my grandparents were growing up, their region of the state was their whole world.  When my parents went to college, they traveled outside the state.  When it was my turn, I moved halfway across the country.  Each generation creates a little bigger world than the last.  The generation that Ella & David are growing up in is global.  There is no limit to where they can go or what their opportunities will be.

Obviously, a huge factor in the expanding world is the Internet.  I’ve written before about the new community we have and the friends we have made, simply by sharing our story on social media.  Our world has grown and our circle has gotten bigger without even leaving Colorado.

Members of our community are coming together to have a national and hopefully global impact.  They (and we) are fighting for rights for all.  I was privileged to sign the petition for change and I’d ask that you read, sign and share as well.  I only want the best for David and I believe passing the ABLE act is a step forward.

https://www.change.org/petitions/u-s-house-of-representatives-pass-the-able-act

What makes us love?

Do our actions make us deserving of love?  Is it the things we do?  Who we are at the core?  What we like?  The way we look?  What makes us lovable?

It’s funny how when we love someone their imperfections are less noticeable to us.  I have always thought Ella was the most beautiful baby and little girl I’ve ever seen.  I’ve written before about how I don’t see Down syndrome when I look at David.  I love them both so much and I know my love for them affects the way I see them.  Even their actions are clouded by my love.  Sure, Ella does naughty things and I have to correct her, but her every day words and actions are so cute to me, I could film her all day long.  I don’t think everyone would appreciate it like I do.  If Jason was quieter, more artsy or didn’t love sports, would that affect the way I love him?

I know not everyone will love my children they way I do.  Their every move won’t be seen as sparkling and brilliant to most of the world.  But, I have prayed since the day they were born that someone will love them in a way that lifts them up, supports them and makes them more capable to give love to others.  I pray I am raising lovable children who are prepared to be loved in the way they deserve.ImageLooks of love

A few extra pounds to love

The second half of 2013, nutrition was pretty low on my priority list. I drank a lot of coffee, ate a lot of carbs and frequently engaged in “cookie” breakfast. Yes, they are exactly like they sound, cookies for breakfast. On any given day I was spending hours in the hospital or running back-and-forth to and from the hospital on my lunch break, so I ate what I could when I could and considered my work outs chasing after Ella and pushing the elevator button for the NICU floor. I gained weight after David was born!
I was reading a post on Facebook today and one of my fellow Down syndrome mamas was asked about her reaction when she received her diagnosis. She summed it up with one word; devastated. I started thinking about one word to describe my feeling about my prenatal diagnosis and I decided it would be heavy. I felt an overwhelming sense of heaviness; like an elephant on my chest from the minute the doctor first called. For months it was like a heavy, gray cloud had settled over everything. I physically felt the extra weight & as my fluid continued to build, so did the added weight; physically & emotionally.
Last month, the doctors put David on a “diet”. Not really of course, but he was getting chubbier before he was getting longer. He wasn’t on the growth chart curve as much as he was moving straight up it. They decided to reduce his calories a bit. Any parent will tell you this is a good problem to have with a baby. I would much rather have to reduce his calories than worry that he’s not getting enough nutrition.
I’m starting fresh in 2014. I’m watching what I eat, drinking more water, trying to run again, just making better choices overall. But, after feeling an overwhelming sense of heaviness for the better part of 2013 there’s about 17 pounds that I think I’m going to hang onto.

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