For the past 365 days, I've thought about that massive shift in our world. The before and the after. Who we all used to be and who we've become. Sometimes it was too painful to reflect on. For a while, I couldn't comfortably look at pictures of all the "before". It was like watching a sad movie where you already know the ending, and it grieves you to see how happy everyone was before. How carefree and innocent. Scenes from the moments before "normal" disappeared forever.
|Laney, enjoying her last day as an only child|
|Neely Jacqueline Claire Lucquete, looking perfectly normal after delivery|
As we get closer and closer to Neely's 1st birthday (52 minutes from now), I am letting some of those repressed feelings surface and the tears that flow are happy ones. The background music to the scene in this part of the movie seems more Rocky-like.
Recently, I've been re-reading some of my old posts on this website and looking at old pictures and videos on my phone and it has been quite a shock. I can't believe some of those things really happened. That cute little raven-haired beauty connected to all those monitors, all that tubing, and barely recovering from all that surgery - that was my baby, my Neely. (I still can't read this post without crying,)
Seeing videos of our time in the NICU takes me right back there ... like PTSD time travel, I guess. I can close my eyes and get there instantly ... I can smell the soap we scrubbed our hands with, hear the monitors beeping, picture the parking garage, elevators, and hallways with the miles and miles of distance that seemed to always stand between me and that little girl.
And all that was just the beginning of this little journey. Between then and now, we've had countless surgeries and re-admissions, including a couple of times where we've come very close to losing her. We've googled a million things we shouldn't and half a million things we should. We've learned to do dressing changes, mix TPN, and administer antibiotics. We've discovered a thousand things you can fix with gauze and paper tape. We learned how to get decent parking at Dell (but darnit, they went and changed it).
Yes, we've had to take a crash course in all sorts of medical things, but that is not all this year has taught us. As hard and time consuming as the medical stuff is, it is mostly background noise to the other new world that Neely has shown us.
(Okay, it is 11:59 and I am going to go upstairs and whisper a Happy Birthday to the most awesome baby ever. Be right back....oh my gosh, she is so stinkin cute.)
This year has been crazy, but it has shown us the infinite number of ways that people can be awesome. We've had love and support pour out for us in so many ways, it's just humbling. Fundraisers at Philips and Texas Oncology, Team Neely t-shirts courtesy of Aunt Keri, dinners brought to us in the hospital, sMiles 4 Sammy bringing us care packages and gifts at Christmas, pastors from CLC praying for her before her surgeries, a custom cape from TinySuperheroes.com, letters of encouragement, donations, Uncles/Aunts/Cousins giving us love and comfort, thoughtful text messages at just the right moment, the social workers at Dell working their magic, visits from friends, a special family who has worked out a way for us to have on-call pilots to Pitt through Angel Flight, superhero nurses and doctors and pharmacists giving Neely the best care ever, Aunt Caty being Aunt Caty, our home health pharmacy (Coram) ... aaah, there is so much more! I would love to give a shout-out to everyone out there who has done so much for us, but I think you get the idea. It's a LOT of good stuff.
We have so many amazing friends, such amazing families - and we really could not have gotten through this year without you.
Switching gears, for those who want an update on the little Superhero. Neely is a little over 16lbs and a little over 27 inches now (so about the size of a 6 month old, maybe?). After my last update, she managed to stay home for nearly 4 months before being taken down by another line infection. She then had 2 subsequent admissions to Dell (a break in her central line and another line infection). This was all in a 3 week span, which was crazy after almost 4 months of being home. She had a recent surgery to remove her g-tube as we were not using it for feeding and it leaked a lot. She seems to have recovered from that surgery and we are trying to feed in small increments now.
People often comment about her hair because it looks like we gave her highlights. She was born with jet black hair, but after her bowel resection it started to turn grey. Then all of the black fell out (or she tore it out) and she was left with the grey. Thankfully, her hair darkened again and now the grey looks like blonde tips.
Unless she is tired or in pain, she is seemingly always happy. Her eyes are so soulful and sweet. They are so expressive and inquisitive. She has 2 little bottom teeth so far. I don't notice that she is skinny or small until I see other babies her age. She seems long and lean, just like her daddy.
She has eczema and is constantly itchy, so we often have to put her arms in restraints. This, plus the leaky g-tube plus the 6 months in a hospital bed have caused a few delays with her motor skills, but I am happy to report that Miss Neely started crawling as of 2 days ago.
She loves her binky and her stuffed bunny from "Otha Gwamma" and she thinks her Big Sisto is hilarious. She talks/babbles a lot and probably understands more than we realize. I tiptoe into her room late at night and just stare at her. I know she wasn't born with all her parts in working order, but when I look at her sweet little face, I just see absolute perfection.
When Laney turned 1, we didn't make a big deal out of it. She'll never remember it, so why go to a lot of trouble celebrating? With Neely, it feels very different. Early on in her little life, we listened to some doctor say that we had the option to not treat her, take her home, and "make her comfortable". Back then, we dared not imagine making it to a year. But here we are ... 1 year down and hopefully at least 99 even better ones to go. So we are going to celebrate because it is a BIG friggin deal!
Thank you all so much ... I hope you will join with us in celebrating Neely's birthday today because you all have had a hand in helping us climb this mountain and reach this peak.
Love and Blessings!
|A note left by Aunt Judy in our room at St David's|
A Message from Uncle Jack:
It's been difficult. It's been an unending test of endurance, patience, faith, conviction, and sanity. If Kat and Josh make it look easy, it's because they're really good at it. Every day, I'm amazed with the people in this house. I may not be a Lucquete, but I'm proud to fight this fight with them. I'm so very proud of Kat and Josh for being the parents that they are and try to be. It's inspiring how much love and attention they provide to two needy kids who require different kinds of attention and care. Now, I may help put out some fires (not literal fires) every now and then, but I have no doubt that they could do this without me here...albeit with more yelling. It's not the ideal situation, but they make the best of it. The hands that guide Neely and Laney might not always be steady, but they are always true. And I'm proud of Laney for being such a good big sister. Someday, she'll be old enough to read this, and I hope that she realizes how big a part she was in helping maintain morale and that always-fleeting sense of normalcy. (Thank you... Space Doctor Laney Lucquete.)
I didn't spend much time with Neely until she got home. But since then, I (like many others) have become enchanted by her. She just looks at you with an all-encompassing love and fascination... And you can't help but want to do everything in your power for her. And the smile! To consider what she's gone through in a year, and still smile like that... It still feels like a little miracle. A couple of days ago, she started crawling. Those milestones, tiny as they may be, feel like huge victories for us.
When Laney was born. I always felt as though it brought the family together. When Neely was born, it went beyond that. It brought our community together. We have met and been touched by so many wonderful people over the past year. In the past year, we've seen and been exposed to the best of humanity. We will never be able to repay the kindness of the friends, family, and strangers who offered comfort and quarter when it seemed like life wouldn't. And no amount of honorary family titles can do justice to just how much we love each and every one of y'all.
I don't know how this story ends. I can't... I won't let myself imagine anything less than a happy ending. And maybe it isn't realistic... But this year has proven that you can't bet against Team Neely. No matter how this story ends, Neely's ability to bring people together will be her legacy.
Neely turned one today. And so begins the next verse of Neely's song. It's stressful to think about what's ahead because the road ahead doesn't get easier. We know that road will be harder and steeper. The ground will be rougher and the footing will be shakier. And maybe this past year was just a small portion of the hardships that come next... But, as with everything else, we focus on the task at hand. Today we celebrate this long, sad, wonderful, first year.
- "Unco" Jack.