BELLE’S BASH|AND, REFLECTING ON 2017

KICKING MY BUTT

I’m a bit ashamed of myself that it has taken me over 2 months to write about the amazing event that happened in our lives on Oct. 21st. The truth is, life has been absolutely kicking my butt over the last few months. I really mean that in the best possible way. I just realized my last post hasn’t been since the beginning of the school year, the week of Belle’s sepsis episode. Since that horrible week in Sept., we’ve been enjoying almost 4 months of health with only two minor ER visits; and both times Joey and I figured out and solved the problem in the waiting room. I’ve been trying to keep up with all of the wonderful things that come with being able to “do life” (something we weren’t sure was going to be possible), but I’m finding working full time and mothering two children, one of which is a high maintenance diva with a full entourage, is definitely the most difficult, yet most fulfilling role I’ve ever been in. Grace has been more real and vivid in my life now than ever before as I’ve witnessed my husband, family, and so many of my friends continually give me what I don’t deserve; time, help, second chances, the benefit of the doubt, lunch, acceptance, dinner, friendly reminders, a kick in the butt, endless grace. I’ve never been busier in my life, and I often find myself collapsing in to bed at night thinking, “What just happened?” And yet, everything I’m busy doing is representative of all of the blessings in our lives, so I’m just so grateful. All of that to say, writing, something else I love, has certainly taken a backseat as of late.

BELLE’S BASH

On October 21, we had the joy of witnessing one of the most beautiful community events I’ve ever attended, let alone been part of. It wasn’t just aesthetically beautiful (which it was, thanks to Jacqualine and Kelly, and their amazing teams.) But even more-so, it was beautiful to see how a small community came together and did something really, really good for a group of kids that span all across the world. For those reading this who either didn’t know about Belle’s Bash or who just couldn’t attend (and for myself to have a record), here is a little rundown.

*We donated Belle’s first birthday to the newly formed MMIHS Foundation. It was the Foundation’s first ever fundraiser and it raised just under $15,000 to get the Foundation on its feet.

*The idea for the Bash came from the outdated statistics (some of which can still be found online) we were told before Belle was born; that kids battling MMIH were unlikely to live to see their first birthdays. For that reason, we named the event, “Belle’s Beat the Odds Birthday Bash.”

*A committee of six very lovely ladies planned and organized the event; My Mom Julie-Food, Friend Jen-Silent Auction, Friend Kelly-Entertainment, Friend Jacqualine-Decorations, and Friend Deb-Public Relations.  Each lady was the head of a team, comprised of other wonderfully giving people who donated insane amounts of time and energy to make the Bash a success. I would love to list all of their names but I’m afraid I would forget someone so I’d better not. If you served on any one of those teams, you are seriously an amazing person and I hope you’re patting yourself on the back as you read this!

*At Belle’s Bash, guests enjoyed free foods and activities, most of which were donated. We had a photo booth, caricature artist, balloon artist, face painting, 8 Disney princesses, and lots of other activities for kids.

*Funds were raised by people donating to the foundation in lieu of a birthday gift for Belle, by selling Belle’s Bash bracelets at local businesses, and through a silent auction. The silent auction was a huge undertaking and we were blown away when 130+ BEAUTIFUL baskets, certificates, and other items were donated

Loading up the RV with baskets!

for the event. (We actually had to transport them to the venue using a motor home because there were so many!!!)

*We all sang happy birthday to Belle. My brother made an adorable picture show of Belle’s first year, and Joey and I spoke and gave some background information on the MMIHS Foundation and Belle’s health.

*Families from all over the country “participated” by sharing photos and stories of their children fighting MMIHS. The kids’ stories were the centerpieces on the tables and we showed a continuous slideshow of their pictures as well as the logos of the many local businesses who made the event possible through donations and sponsorships.

*The president of the MMIHS Foundation, Mollie Caspers, two other MMIHS moms, Erin and Mari, and one other little girl battling MMIH, Janessa, were our guests of honor. Having them there was truly the the highlight for Joey and I, and something we will never forget.

*Anabelle was happy the whole day. She did sneak away for a quick nap because there was just so much activity going on, and it tuckered her out. Overall, it was an amazing and blessed day.

There are so many stories about the day I will keep in my heart forever. One of my greatest joys was watching five of my dear friends, whom I feel God handpicked for the challenge, absolutely shine as they used their gifts, talents, and areas of expertise to plan and carry out an event that would help kids they didn’t even know. Watching guests “fight” (all in fun!) over their favorite baskets, and then seeing “Belle’s Security Team” (aka AHS football players) rip pens out of bidders’ hands when the timer went off was priceless. Seeing the little girls’ faces light up when a princess would sit and talk with them or sign their autograph book was so sweet. One of the greatest surprises of my life, (I’m not even kidding) was when one of my best friends surprise flew in from Texas and showed up at my school the night before the Bash. I about fell out of my chair when she walked through the door. Then, she volunteered to take care of Jonah all weekend which was such a blessing considering I way underestimated how busy we would be all weekend long and the fact that I should have hired a sitter for Jonah.  He had a blast with Auntie Cole and it was amazing to have her there with us. Then, having Mollie and Erin come over to our home after the Bash and talking into the wee hours of the night, crying with Erin because we literally live half a country away from each other and yet our lives are forever intertwined with our sweet baby girls, all of it

Enjoying time with Mollie, Erin, and Mari, all part of our MMIHS family from around the country.

was almost surreal.  The MMIHS Foundation Board of Directors has already met and begun to use the funds to advocate for children battling MMIH. So many of these kids are so close to my heart. I KNOW without a doubt that Anabelle’s future will be brighter because this Foundation, which was merely a dream before she was born, is now up and running and doing great things.

For anyone who donated funds, baskets, food, services, time, energy, prayers, thank you. THANK YOU from the bottom of our hearts.

NEXT PLEASE?

So what’s next for us on this journey? As we come to the end of 2017, we are overjoyed that we’ve been able to live life, that Belle has been home with us and is doing so well, that I can teach and Joey can run his business, that Jonah is thriving at being the three year old little cutie stinker that we adore, and that we have literally only spent 6 total nights in the hospital this year. We count each of those praises as blessings.  I hesitate to write this next praise because I know how it stings to read posts of other kids having gained xxpounds being in the 90something percentile at their checkups when we’re over here praying day in and day out for our kid to just gain an ounce or grow a centimeter. I only share this news humbly, as a praise by the grace of God, and as a medical update. Last week, Belle had a full developmental evaluation from Early Intervention. I was antsy about it knowing that she may well be behind due to all of the challenges she has faced. Specifically, I was nervous about her speech and oral development since a “side effect” of eating difficulties can be speech delays due to lack of muscle development in the mouth. Belle has many challenges, but we learned that she has normal development in all areas, short of “eating solid foods” (No Duh???).  Further the evaluating therapist’s mouth dropped as she observed Belle rip her bottle out of my hand and gulp it down, eat spoonful after spoonful of baby food, then proceed to also grab a puff from me, bite, it, chew it, and beg for more.  Of course she isn’t eating what a healthy baby would at 15 months, and she is certainly not absorbing calories from food or she would be growing, but she holds her own. For that news, we are thankful, and we’ve learned that to keep our sanity, we have to celebrate the little blessings and pray continually about the challenges.

Of course, life isn’t always easy, for us nor for anyone, and we know that 2018 is going to bring challenges both expected and unexpected. Namely, our biggest challenge currently is what seems like a never ending, uphill battle to try to get my kid who can’t digest food to grow.  In the midst of the day in and day out “health” we’ve been enjoying, Belle’s lack of growth looms over us as a “big picture” giant that just won’t go away. As the days of “health” add up, so do the months of her not growing.  It’s a very interesting thing to watch your child develop mentally, emotionally, and socially at a normal rate, yet grow physically at a snail’s pace. Her next clinic visit is in mid January and we are praying that the major changes we made to her nutrition this month have helped her gain. Also, we have scheduled Belle’s week-long transplant evaluation for this March where we will determine what organs she will initially be listed for (if she is listed), as well as what steps we will need to take to prepare for a possible transplant down the road.

As I reflect on this past year, I’ve realized I’m a completely different person. While 2016, the year Belle was diagnosed in utero, born, spent 2 months in the hospital, and we came home with no medical help or clue what in the heck we were doing mostly all runs together as one big blur, as I reflect on 2017, I can see things much more clearly. Praise God, I’m not who I once was. I’ve gained a much needed attitude adjustment and a new perspective on life. Ironically, I have more joy than I’ve ever had before because I can find joy in the simple and mundane now and I don’t take things for granted like I use to. I’ve experienced grace unending from my heavenly father and from the many wonderful family, friends, and strangers He has placed in my path. I’m a changed person and I know it has taken a walk through the valley, one that might never really go away in our lives, to refine me from the selfish and ungrateful person I use to be. Not that I’ve fully arrived, not that I don’t revert back to my former immature self at times (yah, ask my dear, sweet husband about that), but I’m making progress, and that’s what counts. Yes, I truly have experienced a real butt-whooping in the greatest sense of the word. With that being said, I think 2017 was the most beautiful year of my life, and for that, I’m eternally grateful.

 

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