While David is in the expert hands of the PICU staff recovering from pneumonia, RSV, corona virus & rhino virus (phew!), Jason & I took advantage of a snowy Friday night in with our first born. Ella requested pizza & Tangled and we took a page from “make the smallest things magical:101″ and had a family picnic in our homemade fort.
I don’t usually give anything up for Lent. I often think about it and there have been years when I have given something up; but I don’t do it for any reason other than experimental. I’m not intentional about it.
This year, I took a page from my creative genius boss and am implementing 40 Days of Random Acts of Kindness. Some I’ll do on my own but a lot will involve my children. I wrote before about Ella’s growing empathy and I want to encourage that spirit and show her how fun it is to be thoughtful of others. I’ll post periodically on here about how we’re doing or different acts we’ve done. I’m excited to start! Here’s our list:
40 Days of Random Acts of Kindness
- Give a homeless person a $5 gift card to McDonald’s
- Send a “hug” in the mail
- Donate toys to ARC
- Bring my children’s child care worker a yummy dessert
- Relay an overheard compliment
- Pack a bag of water, deodorant, mouthwash, granola bar & hand sanitizer for homeless
- Pay for the person behind me at Starbucks
- Bring a bouquet of flowers to the pediatric floor to be distributed by nurses to someone who needs it most.
- Donate books to the library
- Make a meal for a family who’s baby is in the hospital
- Hold the door open for a stranger
- Leave my Postal worker a thank you note
- Mail an old picture to a dear friend with a note about the memory
- Put a lottery scratcher in a library book for the next checker-outer to find
- Send a thank you card to a favorite Grad school professor
- Write a positive review on Yelp for a place I loved
- Donate clothes to Good Will
- Take cookies to nurses on the night shift on the labor & delivery floor
- Let someone go in line in front of us
- Send a letter to a former co-worker telling them what I appreciated about them
- Make a donation to a battered women’s shelter
- Leave a thank you note for our Pastor in the offering plate
- Change my Facebook status to a compliment of one of my friends and tag them so all of their friends can see
- Be a courteous driver
- Have Ella mail a card to a friend
- Donate baby clothes and blankets to the NICU
- Pack healthy snacks for Jason to take to work and leave in the break room
- Adopt a star for a relative (Ella’s choice)
- Call a restaurant where I received great service and compliment the employee to their manager
- Leave a big tip when we go out to eat with a kind note
- Have Ella color a picture for a friend
- Pick up trash at the playground
- Help a fellow grocery shopper by reaching for a high item, offering them a produce bag, giving them my coupons, etc.
- Send Gatorade to a soccer game with Jason for his players
- Use my blog and Facebook to ask friends and family to donate to the National Down Syndrome Society (NDSS)
- Leave hand warmers at the bus stop
- Offer free baby-sitting to our friends for a night out.
- Donate canned goods to a shelter
- Leave a bag of candy at our neighbor’s
- Bring healthy snacks to our pediatricians office
Soap box time. This video is powerful and truthfully made me uncomfortable and teary at the same time. NONE of these words are acceptable. They are not funny, cute, silly or Ok. Period. Spread the Word to End the Word.
Ella was watching Pocahontas today & the song “Savages” came on. There’s a line, “They’re not like us which means they’re evil.” Isn’t it sad that different has often meant persecuted? What it is about different that scares us? Each generation has their discriminated population; from race to sexual orientation. I’m not going to lump Down syndrome in those same categories because I think that belittles the real torture those two groups have endured. But, what kind of world has David been born into? MUCH better than 50 or even 25 years ago & still I’m afraid for what he will face. He’ll be left out & teased. He’ll encounter whispers & stares. I have no idea the kind of heartache he will face and by extension, the heartbreak I will face. He & Ella are mini pieces of my heart walking around in human form (thank you Harry Potter) so their pain will always be my pain. I’m blissfully in a bubble of peace now, but I know that won’t last forever. I heard once that as a parent, “You’re only as happy as your saddest child.” So what kind of pain awaits David & me? What will be our emotional battle? I will fight for life for my boy; I just wish I knew how to prepare for battle.
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!!
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!
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.
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!