As you may know by now, nothing is ever "TYPICAL" at our house, not even New Year's.
This year, since we are not traveling at the holidays we have the luxury of having access to our caregivers during the holidays. So when we got invited to a New Year's party, even though we knew we likely couldn't stay until midnight, we got our nurse Erica to agree to stay until 10pm so we could enjoy a little bit of New Year's revelry with friends. We had a good time with friends old and new, but soon had to hit the road by 9:30 to get home in time to relieve the nurse who had church plans:-)
Just when we were starting to feel some regular kind of people "normal"... we came home to Braden, of course - who maybe had a different plan. The nurse said his g-tube feeding button was loose, so we decided to change it before going to bed, so we wouldn't have to do it at 6am the next morning. We waited until after midnight, to ensure his stomach was as empty as it could be, before making the swap.
With this new button of his, while it has many perks of being low-profile and extremely durable unlike our old Mickey buttons, the challenge with this one is that the removal process is not as easy. The underside is less flexible, and can make it a little more traumatic at the site to remove and replace. As a parent, you know how hard it is to watch your child go through pain, but knowing you are the one or reason for the pain being inflicted, it's really quite emotional for me. I get nervous, impatient, hot, nauseous and sickly, and I'm not even the one doing it or on the receiving end! I feel like I never really "get it together" with these. So daddy patiently took his time exchanging the button, meanwhile I exacerbated the issue by applying the lube to the new button too soon, causing it to begin disintegrating (like it's supposed to once you place it), but that also meant it was opening before it was inside Braden - really? Let's just make this stressful situation even worse!! I swear I almost lost it, but as usual daddy kept his cool and told me to chill out. In the next 2 minutes he had the old one out and the new one in...
Mommy does the "nursing" afterwards: clean up of the site, application of antibiotic ointment and gauze, administration of pain meds, and loving on him and rubbing his head and turning on his Oliver glow seahorse.
After all that, we were too amped up to go to sleep, so we watched more of the Living Dead marathon that was on. And eventually we settled in and got to sleep sometime before 2am.
Evidently, we were extremely exhausted from the overly emotional events of the evening, because mommy slept through 2 alarms that morning, and our house did not get up until 9am. We adjusted Braden's schedule for the day, and just enjoyed a day together as a family and stealing extra snuggle time with our guy.
I feel like we've just come out of an entire season of THANKSGIVING that began in October and may never end... we are just so grateful for our loving God who continues to bless us with more days to love on our little warrior. God has been faithful to us by bringing a job to mommy that's really all the exciting pieces of her last career, only without the incredible stresses that come with trying to increase newspaper revenues in a world that's gone digital. Even with all the changes going on, we are hoping for more changes for our family in 2014. We have been exploring the possibility of adoption, and feel we are called to move forward with this in 2014. Please realize, this is not a quick process in any sense, and we have many more decisions to make before we really go down this road... but we would appreciate your prayers as we try to discern the path God has meant for us, as we begin our journey to bring a new baby home to join our family. This too will be emotional and incredibly expensive, which means more fundraising, only this time for family expansion, not just to meet the medical needs Braden has outside of insurance coverage.
So as God would have it, just as I was starting to stress out about Braden's dwindling funds in his medical fund, and adding the pressure of fundraising for our adoption journey... a kind-hearted friend of the family contacted me out of the blue to see if he could do a fundraiser for Braden. THANK YOU JESUS and THANK YOU RYAN O'NEILL for being our angel right when we needed one! We cannot wait to see what you pull together and we look forward to supporting you from miles away by letting all of Braden's support team know about your fundraiser! My sweet friend Michelle Gros gave me a necklace for Christmas that sums up what I needed to grasp: "The Lord will fight for you; You need only to be still" - Exodus 14:14 (by the way, her family is selling these as a fundraiser as THEY are adopting this year too!! You can see all the options in their Etsy shop here: http://www.etsy.com/shop/OurOneAdopt?section_id=14352490)
We had to put hard laminate commercial flooring in his room to replace the carpet we just had cleaned 8 months ago. As the highest trafficked room in the house, many adult hours spent in the room with him, it was just necessary. It's actually been quite nice, as it makes moving his cart easier to move so we can get in the chair and snuggle with him!! Here are pics of mommy and Braden on Christmas Eve, and with Daddy New Year's Day.
So as we move into 2014 and you think about all the things you wish to accomplish, I sincerely hope you take the time to be thankful for all that God has provided and brought you through in 2013. We are prioritizing FAMILY in 2014. If this is also a goal of yours, but you are not sure if the things you are doing are making them a priority, I found myself asking a simple question to keep me focused... "Is what I am doing today making a difference on the things I want written on my tombstone?" The sentiments people share after I'm gone, most likely won't be "was a loyal employee, hard worker and always put in more hours than required, was a pretty good volleyball player"... I'd like to focus my time on the things I hope are there: Loyal Friend, Loving Wife, Doting Mother, A Heart to serve others, a faithful servant of the Lord. That's really all the direction any of us need in life, but it's our choice to live it instead of just hope at the end of our days our family shows us more grace than we deserve. I want to earn it while I'm still here.
So with that, from our family to yours, I hope you have an amazing 2014 - so go do something about it! Make a difference, be the change you want to see in the world and carpe diem!